Grief and Spiritual Warfare

Well despite being hit with some severe allergies or a cold... I still haven't decided which it is... I am doing pretty well still. I hit a few bumps on my journey out of grief and into peace in the last week. But thankfully I've ended up with my head above water.

As strange as it may sound, I can feel myself drifting away from God. Not intentionally, but I can feel it happening. I've never felt closer to God than in the months of December and January (when Hailey came into this world and when she left it).

But now as things seem to be going better for me, I don't feel that closeness as strongly.

Why is it that when our lives are going well, we drift away from God? Why is it that when the floor drops out from under us and our lives collapse, we become closer to God than ever before?

I don't like that tendency.  At least that's how it seems for my life, I don't know about yours.

Maybe it's that I feel as though I'm doing well and don't need God as much anymore? But if that's true I'm doing it sub-consciously because I know with full confidence that I still need him just as much.

Thankfully, I'm aware of this which allows me to do something about it. I don't want to drift away from God and find myself relying more on me and less on Him.

I truly think that grief is a form of spiritual warfare. Satan is right there eagerly waiting for our moments of weakness and despair when we are feeling tired and vulnerable. Grief is a perfect opportunity for him to take advantage of us and work destruction in us. The guilt, the selfishness, the what ifs, and so on that so often accompany grief and fill the minds of the grieving can easily ruin us if we are not on guard (I'm betting that those thoughts are not from God).

Therefore, combining my awareness of my tendency to drift away from God and wander out on my own when my life is going better with my awareness of grief as spiritual warfare, I pray a certain prayer every morning that looks something like this: First, I thank God for working his healing in my life and blessing me with so much. (Everything I was thanking him for during the month of November in honor of Thanksgiving on my Facebook, I am still thankful for and they are still blessings in my life.) Second, I pray that God would continue to heal me.  And last, I pray that God would fill me with His Holy Spirit, give me His strength and peace so I am prepared when I encounter situations that might be difficult emotionally (like going grocery shopping and seeing all the babies and moms), and protect me against any lies or traps Satan is trying to set for me.

In the past with my grief, God's word, prayer, and worship were things I clung to in order to survive. Now I don't feel that desperation and dependence as strongly. So I need to make more of an effort to continue my lifestyle of constant prayer, worship, time in God's word, etc. so that I can stay close to God and not fall into any traps waiting to bring me down. I need to put on my armor of God every morning.

The Armor of God - Ephesians 6:

¹⁰Finally, be strong in the Lord and in his mighty power. ¹¹Put on the full armor of God so that you can take your stand against the devil's schemes. ¹²For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. ¹³Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷Take the helmet of salvation and the sword of the Spirit, which is the word of God. ¹⁸And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.

A Poem from a Childless Mother

Tired Posted by Franchesca Cox

A symbol of life, a year later, a symbol of death

Well, it's Sunday night, and the weekend is coming to a close. Tomorrow casual conversations will include the question, "What did you do this weekend?"

I'm not sure if I get asked that tomorrow I could be open with my answer... I wouldn't lie, I might say:

Overall my weekend was nice. My husband and I somehow ended up have two date nights that involved going out to dinner. The weather was gorgeous and we took advantage of it by going on a 2 mile walk Saturday and today with our dog Opie. We watched a couple of movies, did some yard work, went to church, and of course Josh studied a lot.

And that is the truth. But I'm leaving something out. Something, morbid, you could say. And if you don't want to read about morbid, then you should probably just skip this post. I understand.

Today I finally forced myself to sit down in front of my computer and start to research something I have been putting off for a month.

So what did I spend my Sunday afternoon doing?

Shopping for my daughter's headstone for her grave.

We hadn't bought her one yet because they wouldn't be able to put it in until spring because the ground had been frozen from the winter.

When I started looking for one I did okay at first. Became a little choked up as my eyes studied the tiny flat grave markers with etchings of a pacifier, a teddy bear, blocks spelling out the word 'Baby.'

How utterly depressing. I couldn't avoid the heart break involved in this. But I was doing okay until I started to become frustrated. I didn't know what I was doing. I didn't know where to look. I didn't know what I (we) wanted. I found numerous websites, but many with little selection...I came across nothing I felt worthy of using as Hailey's grave marker.

And as I write this I will be honest. I hate writing those words... "Hailey's grave marker" "Hailey's headstone" "Hailey's grave" ... I hate thinking those words. I hate the task we have at hand.

So as I searched, my frustrations opened a path for my tears to come forth. And eventually I had to walk away from the computer and go sit outside and just cry. I've started to classify my cries. It wasn't a sobbing, it wasn't a weeping, it wasn't the kind of crying that involved silent tears, it was just plain old crying.

Shopping for your own baby's grave marker is just as depressing as it sounds. It's terrible.

So we haven't chosen a grave marker yet. I've found a couple that I think would be nice. But I had to stop 'shopping' today and give myself a break...it really drained me emotionally. I know this will sound funny, put picking out her headstone is a lot harder than I thought it would be for different reasons than I thought it'd be. It's weird that in some respect her life here comes down to a representation of her life on a granite stone. But I want to get it just right. I know these earthly things are only temporary and Hailey's soul did not die with her body and who she really is is more than her body in a grave, but that doesn't change how I feel about wanting a nice marker for where her body lies.

This whole 'task' makes me get close to that place of resentment... where I think I shouldn't be shopping for my baby's headstone, I should be shopping for new clothes for her since she's growing so big....but I'm not.

One year ago yesterday I took a home pregnancy test and found out I was pregnant with Hailey.

Never in a million years would I have imagined that one year from that day I would have buried her 3 months ago and be shopping for her headstone. Never in a million years....

Last year at this time my mind was thinking LIFE. Now a year later my mind is thinking DEATH. <sigh>

Life is so fleeting... so brief... Scripture says our life is...

Job 14:1 - Few days, like a flower
II Samuel 14:14 - Like water spilt on the ground
Psalm 103:15-16 - Like grass, leaving no memory
I Chronicles 29:15 - Like a shadow, it will not stay
James 4:14 - Like a mist or the vapor from a pot
Job 7:6-7 - Like a weaver's shuttle, or the wind
Psalm 78:39 - Like a wind
Psalm 90:9 - Like a sigh
Job 9:25-26 - Like a swift messenger, a swift ship, or a swooping eagle

And here I am...understanding that more than I'd like sometimes, wishing my daughter didn't have to teach me that one.

Shopping for Hailey's grave marker sucks (for lack of a better phrase). It does. Yes I can find healing and joy and the like during this time of mourning, but it doesn't change the fact that this whole thing just sucks sometimes. But I have to trust in God. His ways are greater than mine.

"As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts."

Isaiah 55:9

So pretty morbid, pretty depressing I know...

But after 'shopping' today, I do have a few ideas now... and I will continue the search for one that I feel is appropriate for her...

Discouraged

Well today I feel rather discouraged. I wrote a long, thoughtful post about Opie...memories of Opie with Hailey...about him as her big brother...about him as a companion to me... and of course, my computer or internet or blog decided to not work when I clicked save draft (and it didn't do any of its usual automatic saves)... so when I went back to publish it, there was no post to be found... well the post was found, but it was blank... so that was pretty discouraging. It was one of those posts I put a lot of thought and time into.

And then I weighed myself (Friday mornings are my weigh-ins for myself)...and I didn't lose a pound, not even an ounce. I stayed exactly the same as last week. I have 5 lbs left to lose by the end of next week so my goal was about 2 lbs a week. Well... didn't meet that goal this week. Again, it was pretty discouraging.

After my discouraging start to the day, I was off to spinning. If you don't know what spinning is, it's torture on a bike. No it's really not that bad, but the first week or two of spinning I thought it was torture. It's basically like a cycling (bicycling) class, and it's hard if you push yourself like you're supposed to.

Well let me just tell you, I was feeling discouraged the entire time I was on that bike. I didn't want to be there. I didn't want to exercise. I had no motivation. I didn't want to feel my heart rate rise or be breathless as I worked out. I basically wanted to say "screw this" for lack of  a better phrase.

But I worked through it, and it was really challenging to say the least. It was one of those workouts where you are in constant battle against your mind which is telling you that you can't do this, it's too hard, just quit, and so on, and your body is screaming and burning with every move you make. I had to play mind games with myself and tell myself to shut up a few times  to get through the workout. But I did it. I pushed through it. And I'm glad I did. But I'm not going to lie, it wasn't fun.

And now I'm actually kind of glad I had a discouraging start to my day because it gave me something to think about while I was 'spinning' and now I have something new to write about for my post.

Grief is really discouraging. At times during the grieving process, you feel beyond discouraged. You get those same thoughts in your head; you want to quit; you don't think you can go on; you don't want to go on. Getting out of bed is hard. Getting showered and out of the house is even harder. But eventually you fight, even though it's challenging, and you get beyond the discouragement. But then moments sneak up on you that bring you back down to feeling completely discouraged like you will never get through this grief, you will never heal, you will never find joy again, and so on.

And my grief is discouraging at times. I hit the point where I didn't want to do anything. I wanted to quit. But I am making progress with my grief. And sometimes I make progress - ten steps forward - and then I hit a bump and get discouraged - 2 steps back. It's a continuing battle. If I get discouraged and don't fight back and don't persevere with my grief, it will consume me, I know it will. It's dangerous to be discouraged about something and not do anything about it.

Me losing my blog post this morning was discouraging. Me not losing any weight this week was discouraging. But I chose to persevere not let my discouragement bring me down and keep me there. I decided to write this new blog post and I'll try to write the one about Opie another day. Despite my feeling like my working out and efforts are getting me nowhere and being discouraged with my weight, I went to the gym and continued to fight my battle against my weight anyway.

Feeling discouraged and trying to do something about it is hard. It reminds me of my bike ride today. We were strength training - 4 hills, up and down each hill - you spend minutes in a seated climb pushing against a lot of weight, you spend minutes standing as you 'run' on your bike with all the weight you can take - it's challenging. It can be discouraging ... when will the climb ever end? How much time is left? I can't do this anymore type of challenge... And then you make it over the first hill and feel great as you coast down. But then you hit your 2nd hill, and your 3rd, and your 4th. It's a lot like fighting back when you're feeling discouraged in life whether it's because of grief or something else. But if you work hard and don't lose the faith, you can overcome it. But the key is you have to work, it doesn't do it on it's own.

Is there anything in your life that you feel discouraged about? What is it? How can you overcome it?

Well if you are discouraged, here is my comfort that I'll share with you:

Joshua 1:9 "I command you, be strong and courageous! Do not be afraid or discouraged, for the Lord your God is with you wherever you go".

Well I was going to write today's post about Opie... and actually I did write it about Opie, but something went wrong when I attempted to save the draft... and I don't have the time or patience to try to rewrite it today... so today's post is going to be about something different and a lot shorter.

When Hailey was in the hospital our friends managed to bring us some of her belongings from home. Having Hailey's own clothes, blankets, etc. were such a blessing to have. And I am so thankful that they thought to bring a few of books I had bought for Hailey.

One of the things I always dreamed of doing with my daughter was reading her a bedtime story every night before bed. Well I was able to do that in the hospital with Hailey.

One of the books I read from is called Dear God: Another Door...Another Opportunity from the Dear God Kids series. The pages of that book were so appropriate...for Hailey... for us...

For instance, one of the letters to God says, "Dear God, Have you noticed I could do with a little help around here?"

It was like Hailey or myself had written that question in our letters to God. The verse at the bottom of the letter was so comforting, "Behold! God is my helper! The Lord is with those who uphold my life!" Psalms 54:4.

That was probably my favorite one from being in the hospital with Hailey. I wanted those words to comfort her and me.

The other "Dear God" that I like from the book is another one I focused on while in the hospital with Hailey, but the next one, and the one before, are still so appropriate now even after Hailey is gone.

The second one reads, "Dear God, Give me light!"

"Do you remember the pretty candles on your birthday cake? The cake looked even more beautiful when the candles were lit. God wants to light our lives too! Just as the candles on the cake brighten the lives of others, God's light in you will bring joy to many people. With His light you can show others the right way to go!"

"The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid? Psalm 27:1.

God lit our lives up when He gave us Hailey. She was a bright shining light in our lives, and still is. And since Hailey was born, I have wanted her light to shine and be a reflection of God's light ... "God's light in you will bring joy to many people"... I didn't know how true those words were when I first read them to Hailey.

That letter from this children's book, which I bought for a quarter at a garage sale while I was pregnant with Hailey, reflects the purpose of my blog, and reflects my desire to light a candle for Hailey on her birthdays now that she is gone as I wrote about in...

I continually pray that God's light will shine through in Hailey and in our lives.

The secret I carry

Well, I'm missing Hailey tonight...not that I don't every night...but tonight it comes with its companions: feelings of sadness and emptiness...

While I've been doing much better lately, like I referred to in my last post, I have to remember to keep my 'armor' on since I am still in constant battle against my grief. Just because I am more okay in some situations that used to tear me apart, doesn't mean I should go rocking the boat ...

For instance, the other night I looked up the saddest scene from a movie ever on YouTube. You know the one; the scene from Dumbo where Dumbo's mom is locked in chains and being kept from her child. Then Dumbo visits his mom and she manages to rock him while the song "Baby Be Mine" is playing in the background. And while the song plays and tears are streaming down the the momma elephant's face, the images on the screen switch to all the other happy momma and baby animals together.

Ugh. Why in the world would I do that to myself? That scene has always made me cry. Why in the world would I watch that scene and listen to that sad song after losing my daughter. Clearly I can relate to Dumbo's mom as I'm permanently separated from my child and watching all the other happy moms with their children too. I have no idea what made me do that...but it was not a good idea.

Then the other day I managed to find myself looking at one of my Facebook friend's pregnancy/ baby albums... And today, the same thing, different friend. Why do I do that? I'm not ready for that. I know that. It's like I'm unknowingly pushing the limits with myself.

I don't want to do those things because I am still not ready for them and I don't want to feel that kind of sadness and emptiness those things can lead to. I know it might seem like I'm trying to 'deny' those feelings, but really I'm not, you'll just have to trust me on this one.

I think perhaps now it's that I can handle complete strangers and their babies for the most part. But it's still hard when confronted with people I do know who have babies.

When I see a picture of a mother and her baby, I can't help but long to have what she has. It's so hard not to compare myself and wish Hailey and I were in their places instead... remember that post I wrote awhile back about how I was comparing myself to everyone. Well yeah, that's starting to happen again and I'm trying not to let it because it definitely leads to no good...

Trying to deal with who I am now is still difficult, although I have come a long way from where I started. But I'm still and will always be a mother without her child, babylost as some call it. If you were to meet me, you wouldn't know the tragedy I've experienced.You wouldn't know that I had to bury my 1 month old only a couple of months ago. You have a rocking chair that you rock your baby to sleep in. Do you know I have one too? Only, I used to rock my baby to sleep in it, and now it sits empty and unused in her room... You don't know the secret I carry. And it's a secret that screams to be known. If it's not known, then it feels like I'm ignoring who I am... if that makes any sense.

Sometimes when I'm in an exercise class and women are meeting and chatting about their kids and families, I want them to know what happened to me. I don't know why I want people to know, people I don't even know, but I do. Maybe I want the sympathy or the attention. Maybe I see their innocent, naive joy and I want them to know not everyone has that, especially not this girl standing right next to you....<sigh> I don't know...I really don't know... Or when I'm meeting new people at church, I want them to ask me about my family. But no one does, they just assume I don't have any kids because they don't see any with me. It's hard...

It seems like everywhere I go I think to myself "if only you knew what I've been through." When I was shopping for my dress for Hailey's memorial service and the sales associate wouldn't let me check out at her register and told me to go to a different department, I could only think how I wished that lady knew why I had that black dress in my hand - would she have been nicer? And then that gets me thinking, how many people are walking around with 'secrets' like this? How many strangers do we pass by every day who are dealing with a personal tragedy we can't even imagine?

And yet at the same time - as much as I want the "secret" I carry to be known, I hate the awkwardness in the conversations it causes when it is known. The look they give me... They don't now what to do or say... And I can't blame them. I understand it, I do. I know they'll say the expected 'oh I'm so sorry, I didn't know' - and then it gets awkward. Out of politeness or not knowing what to say, no one ever asks about her or what happened...even though I wish they would. So then the conversation shifts awkwardly unless I initiate talking about Hailey, which I love to do, but I don't do it always because I don't know if they want to hear about my baby who just died...I don't like knowing whether I should talk about her or not, probably like other people don't know whether to ask about her or not...

And regardless of what I do after my "secret" is known, it's like I'm forever labeled as 'that girl who lost her baby' and then sometimes it feels like those people begin to avoid me ... but I guess who can blame them... I mean who wants to be around someone who experienced a tragedy like that? And those people who do know, even then things can be awkward. Sometimes I can tell they're thinking 'there's the couple that just lost their baby....so sad..." or something of that sort. I can feel the eyes on us or the eyes that intentionally don't make eye contact.

I hate that it's awkward no matter the situation sometimes. And most of the time after that initial awkwardness, if someone continues conversations with me, it gets better, it really does.  But I have to say, I prefer awkwardness over silence any day. I would much rather share my secret that than carry it on my own wishing for someone to ask me so I can tell them I had an amazing daughter.

So I guess I will carry my "secret" until someone asks me if I have children. Then I will tell them I had a daughter who recently passed away, and then I will take the initiative to tell them briefly about her, maybe her name, how old she was, that she had Trisomy 18... and then see how the other person reacts to decide whether to continue talking about Hailey or if it's time to change the subject...

And if you know me, please don't ever hesitate mentioning Hailey to me or asking how we're doing...Even though I seem okay and am doing pretty good, it does still hurt and I still do like to be asked because it makes me feel like she wasn't forgotten and what happened to us was forgotten about. Plus I still love talking about her...but I never know who wants to hear...

<wow, didn't mean to make this post that long, it's late...hope it makes sense! I may have to do some editing tomorrow!>

To my friends who have babies who are reading this: please do not let anything I said make you feel awkward or weird around me - please just be you and be normal and be real. Do not worry about shielding me from your life or your child or your happiness. You don't need to hide that part of your life from me. It's okay to share even if yes it may make me sad, it's not your fault and it is what it is. It's a part of my life now and I will work my way through it.

To my Hailey - I miss not being able to hold you and rock you to sleep anymore. I cannot wait until the day when we're together again and I can hold you and rock you in my arms forever... Love, Mom.

Peace and Love

My grief has a new face these days, and I've struggled to understand it at times. I feel very at peace. Throughout this journey, starting at Hailey's birth until a few weeks ago, I could sense God's peace. But this peace that I'm feeling lately... It's so much greater than I had ever expected to feel. Especially with Hailey not even being gone 3 months yet.

I feel like I'm "okay." I'm content. I feel really at peace at times. I think of Hailey throughout my day every day. I still continue to miss her every day, and I know I always will. But the way I miss her now is so much different than the way I missed her a month ago. It's so different and I can't really explain it...My heart no longer feels so very broken. It's not whole, but I can feel God healing it.

I remember I actually feared this day that I'm writing about right now. I feared the day that I wouldn't miss her so much. I feared the day I would experience healing. I couldn't imagine it. There was a part of me that wanted to stay broken, that wanted to stay in that dark place doing nothing but missing her. There was a part of me that thought if I truly loved my daughter, I would never emerge or heal from that place. There was a part of me that thought if 'time' or God healed all wounds ... I didn't want it. How could I ever heal from losing Hailey? I didn't want to stop missing her. I feared it. I feared what it meant. I feared it would mean I was a terrible mother, that I didn't love her enough.

But here I am. Experiencing miraculous healing - healing that I once thought wouldn't happen for another 20 years, if ever! I remember feeling like I couldn't go on and didn't want to go on. And here I am 'going on' and I am doing okay. I am not healed completely and will never be, but I am truly thankful for the place that I am in right now.

To make a reference to Mack from The Shack, I feel like my Great Sadness, my grief that I was wearing like a blanket wrapped around me, has been lifted from my shoulders. I don't see my world through monotones and shades of gray anymore. I can see the wonder and beauty and color in the world again. My grief was a burden I started carrying myself, and than I laid it at the feet of Jesus - and every day I have to do this anew. He is faithful, and He has lifted my burden and my grief... and I am in awe...

Do I love Hailey less? Absolutely not! Does it still hurt to have lost her? Of course! Do I miss her less? Absolutely not! I just miss her differently now. It's a better way of missing her than the way I was doing it before. Does this mean that I don't cry anymore? Absolutely not! I cried today when I was in her room and I smelled her little hat I haven't washed yet...and it brought her back to me for a moment...  Do I cry less? Yes. Do my tears have a different meaning and feeling to them? Yes. They are no longer tears of pain, of hopelessness, of despair, etc. My tears seem more controlled in a sense even though they come unexpectedly. Sometimes they come out of joy for having Hailey as my daughter, sometimes because I miss her, most of the time because I love her.

I realized that lately when I become sad and/or cry, it comes from my incredible love for her. It's like my love for her is trying to burst forth and just has to escape me somehow and I can't release the love I feel like most mothers. I can't hug her. I can't cover her in kisses. She can't hear me tell her I love her. So sometimes my love comes out in tears. And they are good tears. And when I think about them as they trickle down my cheeks and I think of Hailey, I smile. Smiling and crying and happiness and sadness are still paradoxical combinations I'm still struggling to understand, but I love them together.

In my journey through grief, I have obviously taken to writing to help me, and I have found that reading the blogs of other moms who have experienced similar loss and similar faith work to heal and inspire me too. A day or so ago I was reading a blog post from Holley Gerth. She wrote about the peace that she felt after losing her baby - the kind of peace I have. And I love the way she captures this peace with her words - it's one of the most amazing descriptions of God's peace that He gives to the broken-hearted, to babylost mothers like myself. She writes:

“As I was driving, I reflected back over our journey and I realized the kind of peace I meant. It’s not the pansy, pie-in-the-sky, life-is-perfect peace. No, this is the kind of peace that comes after war. It’s the hard-won, show-you-my-scars, didn’t-think-I’d-live-to-tell-about-it, peace. It’s not gentle—it’s wild, fierce, and I’m not giving it up, not ever, because I paid too high a price to get it.”

That is the peace I have. My peace does not come from thinking my life is perfect or from feeling happy and smiling everyday like everything is just peachy-keen. Cause it's not. My peace is as she describes. I've been through a war, a battle, and I am winning it with God's help. And like Holley writes, it is fierce and I am not giving it up. It is good to have.

Remember how I said I struggle to understand this 'peace full' stage of my journey through grief:

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7.

When my grief was at its worst, it was in the middle of the bitter, cold, lifeless winter that sucks the colors out of the world and hides the sunlight. And now that spring is here, I can see the sun (Son :) ) shining in my life again.



I feel like I am being healed, like I am coming alive again. The sun is shining, and I can see the vibrant colors of the world that come to life in the spring.

I took this picture of the sun on Saturday, the first day of spring. Josh pointed out that the sun looks like a heart. How unbelievably perfect... as I am at peace right now living in the light of the "Son's" love.

“…my God turns my darkness into light.” Psalm 18:28

So I am thankful for this peaceful stage of my grief. I'm sure there will still be days in my future that will be unbelievably difficult and painful as my heart and soul ache for Hailey, but I pray for now that this peace would continue. I am seeing that there is hope after all... :)

To my precious Hailey in Heaven, I hope you know how much your dad and I love you and miss you. We're doing okay. I know Jesus shares His love with you now, but I hope He shares our love with you as well. We smile when we think of you, which is often. I like to think that you and Jesus picked that picture of the sun just for us on Saturday. Thank you. Love you so much, mom.

Scrapbooking Chaos

Scrapbooking is one of those hobbies that I felt was perfect for me. I love taking pictures, looking at pictures, collecting mementos, capturing memories, showing them off, and I enjoy all things arts and crafts. However, I really have only created 2 scrapbooks in my life.

The first one was a scrapbook I made of mine and Josh's dating life way back when we were dating. It was a good attempt, but I think it taught me I was not the natural scrapbooker I wanted to be. It wasn't a failed attempt, but it sure wasn't a great example of scrapbooking.

My second attempt at scrapbooking was better than the first. I made a scrapbook of mine and Josh's vacation to Walt Disney World. I am quite proud of the pages I completed. However, there are still 2 empty pages with photos stuck inside and some sticky notes of what I 'meant' to do ... still there 5 years later. :)

So as I mentioned some posts back, I am making a scrapbook of Hailey's life; therefore, this is my 3rd attempt at scrapbooking. Despite my past, somewhat lackluster, unsatisfying attempts at scrapbooking, I have to say that I am truly enjoying making this scrapbook. And I love remembering Hailey as I make it, even though some of the memories are difficult ones. The good, the bad, it's all my Hailey and I love it all because of that.

Some of my aunts, uncles, and cousins sent me some scrapbooking supplies around Christmas so I had something to start with. And then our tax return money came right when I needed to buy the rest of my scrapbooking supplies - because I sure didn't have the amount that I spent budgeted for this task! I forgot that scrapbooking is one expensive hobby.

Our formal dining room has become my scrapbooking center. Thankfully we don't use it much and our table is the perfect size to layout my supplies and pages.



As you can see, I have completely taken over the dining room with my scrapbooking endeavors. (And what you can't see in this photo are the two chairs in the corner that function as storage for large pink basket from Hailey's room that is stuffed full of mementos and other related papers and photos that I'm not using at the moment.) I'll admit, it is quite the mess - but it is organized chaos as some call it. I know where everything is and what I'm doing - most of the time. :)

So far I have successfully completed the 'first' section of the scrapbook which is about my pregnancy with Hailey. And when I say successfully, I mean it. I am proud of the pages I've made so far. This 3rd time around I'm starting to get the hang of this whole scrapbooking thing. I've learned that it definitely pays off to plan ahead before I actually use any type of adhesive on my pages, and I need to practice some patience if I want it to look just right.

Today I started on my labor and delivery pages. I have a lot of work ahead of me until Hailey's scrapbook is completed. But I am enjoying it. I am thankful to have the free time to make her scrapbook. If I had a full time job right now there is no way I would be able to put the time into it that it deserves let alone complete it.

After I finish Hailey's scrapbook, do I think I will continue to scrapbook? Well... maybe, but let's just say this is not going to become one of those regular hobbies of mine.  Scrapbooking takes too much time and patience for me to really enjoy doing it regularly. I will save my scrapbooking 'skills' for only those 'really important' things in life. The rest I'll just blog about!

Heartbeat

Today officially marks the first day of spring. And thankfully it feels like spring here in AL unlike back in my hometown in IL where they are experiencing snow today. To celebrate the warm spring weather and rid myself of this hideous white glow I have, I laid out a blanket on our back lawn and immersed myself in the sun's rays. It felt good to feel the sun's warmth and the refreshing light breeze on my skin. A perfect day and a perfect way to relax.

As I turned onto my stomach and laid there enjoying the beautiful afternoon, a weird thing happened. I could feel my stomach pulsing from my heartbeat. Literally I felt my heartbeat in my stomach. Strangely and amazingly, it was reminiscent of feeling Hailey moving in my belly. My heartbeat felt like those first flutters I felt during my 2nd trimester which were the first movements of Hailey's that I was feeling. Feeling your baby move about in your tummy and 'kicking' around is one of those miraculous events that I am blessed to have had.

As I sat thinking about my heartbeat and what it used to feel like when Hailey moved about in my belly, my mind wandered to the time Josh and I first heard Hailey's heartbeat. It was a memory I hadn't thought about in a very long time. I love when memories come back to me out of the blue. They are such a gift that I treasure.

When I found out I was pregnant, I was living in IL and Josh was in GA for Army training. I went to most of my appointments alone, but Josh was able to make the drive back to IL and come with me to a very special doctor's appointment. He was able to come with me for my first ultrasound.

Up until that point in my pregnancy, since it was so early on, I was never given any 'official' doctor confirmation that I was indeed pregnant, so the day of the ultrasound I was a little nervous. An at home pregnancy test and 'mother nature' confirmed that I was pregnant, but I wanted more 'official' proof. So the first ultrasound was it. A part of me feared there would be nothing there on the screen and they would regret to tell me that I wasn't pregnant. But thankfully, that didn't happen.

I remember the ultrasound technician putting the gel on my stomach and being surprised by how warm it felt. Then before we knew it, we could see little Hailey moving about on the black and white screen. There was our baby. The baby we dreamed of and prayed for.



She was so tiny, with only little 'buds' for arms and legs. But so cute! I couldn't believe that beautiful little baby was growing inside of me. (If you look at the ultrasound picture from that day, Hailey's head is on the left, the little triangular shape is the beginnings of an arm, the next round looking thing is her torso, and then you can make out at least one leg/foot to the far right).

Then, the technician turned on the sound so that we could hear our baby's heartbeat. And there it was, as fast and as strong as ever.

...wow...

It was one of those moments that took your breath away. I remember Josh gently taking my hand and squeezing it as we watched our baby and listened to her heartbeat. Amazing...

It was one of those few moments in life that I remember being truly happy and felt love flowing throughout my entire being. A feeling that words fail to describe. It was all so amazing...

I am so thankful for remembering this today. And I am so thankful for the experiences of seeing Hailey and hearing her heartbeat all those times during ultrasounds. What beautiful blessings that I am able to hold on to even now that she is gone. These blessings and memories bring so much more warmth to my life than the sun's rays ever could.

I love you and miss you munchkin. xoxo mom

"Rain 001"

A moving story of a father and son that illustrates where God is when it 'rains' or 'pours' in our lives.

Happy Friday - Keeping it short but sweet today

This is a week delayed, but...

Be Not Afraid (the organization that allowed us to publish Hailey's story on their website) has a blog (I've added the link to my blogroll). The exciting news I want to share is that the blog post from March 10, 2010 is about Hailey and my blog! :)

Love it!

To read the short but sweet blog post, click here.

I'm off to enjoy this gorgeous warm AL weather and ready to start my weekend! Have a great weekend readers!

Today is National Trisomy 18 Awareness Day!

Today, March 18, 2010, is National Trisomy 18 Awareness Day!

National Trisomy 18 Awareness Day occurs on the 18th day (to represent the chromosome affected - the 18th chromosome) of the 3rd month (to represent the trisomy - the 3 copies of the chromosome) of the year.

What can you do?

• All of you on Facebook, to raise awareness consider posting this as your status for today:

Today is National Trisomy 18 Awareness Day, the 18th day of the 3rd month, 3/18. Please consider reposting this as your status if you know someone who has been diagnosed with Trisomy 18 along with that child's name to help raise awareness and honor that child's life. If appropriate, consider using an image of the child as your profile picture for today. ~In loving memory of my daughter, Hailey Marie Vanderlip~

• You can share links to my blog or to my posts about Trisomy 18 via facebook, twitter, email, etc.


• You can share the YouTube video '99 Balloons' about Eliot, probably the most famous baby diagnosed with Trisomy 18, via facebook, twitter, email, etc


• You can spread the word about Trisomy 18 with others in your conversations today and help educate others.


• You can educate yourself if you still don't know much about Trisomy 18.

Here are some links you might consider sharing:

March: Trisomy Awareness Month Blog Post

Hailey's Story on Be Not Afraid

99 Balloons

Trisomy 18 Foundation

Trisomy 18 Hope

Do you know someone besides Hailey who was diagnosed with Trisomy 18? Leave a comment for me, I'd love to hear about it!

Back to Mack

Here is the post about The Shack that I said that I was going to write in my "A Healing Misunderstanding of Mine." If you haven't read that post or my post "The Great Sadness..." I suggest you start there before reading this one.

So I suppose this post really is again about those questions we all ask - especially in the face of grief. Where is God in the bad? Why does God allow bad things to happen to good people? Why is this life full of pain and ugliness? Is God good? And this made me think back to Mack in The Shack.

Early in the book, Mack whispers, "I'm done God...I can't do this anymore. I'm tired of trying to find you in all of this." The narrator explains, "And with that [Mack] walked out the door. Mack determined that this was the last time he would go looking for God. If God wanted him, God would have to come find him" (p.80).

(What Mack says to God, who he doesn't even think is there, reflects fairly accurately thoughts in my heart the time my grief nearly drowned me and I wanted to just give up and walk away).

At one point much later, Mack says, "And all I wanted was a God who will just fix everything so no one gets hurt." But he learns, this is not who God is. Another character asks him later, "You don't truly believe that God is good, do you?" And he doesn't hold back, he shouts no.

(Boy can't a part of all us relate to that?? In the midst of tragedy, whatever that tragedy might be, it can be hard to believe and trust that God is good.)

Further in the story, dealing with this same issue of Mack's, a character says: "Isn't that your just complaint, Mackenzie. That God has failed you, that he failed Missy [his daughter]? That before the Creation, God knew that one day your Missy would be brutalized, and still he created? And then he allowed that twisted soul to snatch her from your loving arms when he had the power to stop him. Isn't God to blame, Mackenzie?"

(In the darkest hours of my grief, I will admit I felt that God had failed me, had failed Hailey - which is part of what I wrote about yesterday. In my case, I whole-heartedly believe that God created Hailey the 'imperfect' way that she was. So of course in a sense for me, God was to blame because he created her... but that is a perspective I do not have you know if you've read my other posts. God created her and loved her and did it all for a purpose. However, when other tragedies strike, like when my dad passed away from cancer, or someone is killed in a car accident, or someone is kidnapped, etc. We all wonder - is God to blame for those tragedies?)

To the above question, Mack answers back, "Yes! God is to blame!"

Some great things happen in between that conversation and the next part of the book, but I'm not going to share that here. So later, the character attempts to explain God's goodness when Mack (and us) blame God for the evil and the pain. "...[God] doesn't stop a lot of things that cause him pain. Your world is severely broken. You demanded your independence, and now you are angry with the one who loved you enough to give it to you. Nothing is as it should be, as [God] desires it to be, and as it will be one day. Right now your world is lost in darkness and chaos, and horrible things happen to those that he is especially fond of."

(I think this character's response is profound and true - it is based on scripture - but these thoughts are thoughts that can be pretty eye-opening and life changing for many of us).

Mack responds as many of us would: "Then why doesn't he do something about it?"

"He already has..."

"You mean what Jesus did?"

(Yes! God does not eliminate evil because it would eliminate free will and without free will there can be no true love- and he loves us. So because he loves us, he does offer a solution in his son Jesus Christ. With Easter right around the corner, maybe we all should pay closer attention to the meaning behind Good Friday and Easter - or Resurrection Sunday. We can have hope and life because of Jesus - as I expressed in yesterday's post and others before it.)

...This only offers a small solution to Mack's large problem. Mack again, "But I still don't understand why Missy had to die."

(Again, something I think we can all relate to when we lose a loved one. For me, why did Hailey have to die when she was only 36 days old? Why did my dad have to lose his battle with cancer so shortly after and when he was a good person, a believer, and only 60 years old? Why did he die before he had the chance to see his grandson grow? And the questions can continue in us.)

The character's response: "She didn't have to Mackenzie. This was no plan of [God's]. [God] has never needed evil to accomplish his good purposes. It is you humans who have embraced evil and [God] responded with goodness."

(I will interject here by saying, again, for me personally, with my daughter's death, I believe Hailey's life and death were to some extent a plan of God's because he created her the way she was. But obviously, I can still agree with the character's statement above even in Hailey's case, because if this world wasn't fallen, then it would be perfect and in that world, Hailey would have been perfect... but that is not the case. Either way, whatever perspective I choose to believe or you choose to believe, the face remains that God will work His goodness in her death (some of which he has allowed me to see as I have revealed in previous posts).

Now the issue of what is good and what is evil - well of course - that's a whole other issue, but related nonetheless!

Not to get too side tracked, but at one point earlier in the book an idea comes up that shakes Mack's belief on what is good and what is bad - "...in one instance, the good may be the presence of cancer or the loss of income -- or even a life."

(Phew! That's a hard one to grasp isn't it?But they can be good...they can be used for God's goodness, as I have seen in my life and other's have seen in theirs.)

Back to the conversation in the book I had been writing about - later , the character explains, "...Evil is the chaos of this age that you brought...but it will not have the final say. Now it touches everyone that I love, those who follow me and those who don't. If I take away the consequences of people's choices, I destroy the possibility of love. Love that is forced is not love at all."

God is good. His love is perfect.

A Healing Misunderstanding of Mine

Many people wonder how I have such a strong faith and love for the Lord even though I have experienced such a strong season of sorrow in my life...

At Hailey's memorial service I wrote a note that was shared by a family friend; I wrote:

...today we don’t mourn the loss of a life cut too short nor are we angry with God, we celebrate the life of our amazing daughter and the miraculous 36 days she lived...

At my dad's memorial service I wrote and read something similar:

...While someone may expect me to be bitter or angry about the loss of my daughter and the loss of my dad within such a short period of time, I am not. Instead, I want to tell you all how thankful I am to have such an amazing Heavenly father and how thankful I am that He blessed me with such an amazing earthly father...

Well let me tell you, my faith has even surprised me at times.

The moments of peace, joy, and contentment that God has given me surprise me. Before Hailey passed away and I attempted to visualize life without her, I thought I would be devastated, paralyzed by grief, and I couldn't imagine myself ever healing. I never thought in a million years that only 3 months later I would be where I am at. God surprises me, but really His faithfulness shouldn't.


At first, when Hailey was born, my faith in trusting God was like instinct. I didn't even think twice about trusting Him, about knowing His will would be done, about Him loving me, loving Hailey, having a plan, etc. Didn't think twice, didn't bat an eye. It was natural for me to turn straight TO GOD as these waves came crashing down on me instead of AWAY.

But I am an imperfect person. My faith stands strong, but I will admit it has shaken.

There have been nights spent sobbing and sleepless. There have been days I have literally curled myself into the fetal position on the cold tile floor of my bathroom and gave into the grief and sobbed in the dark until I had no energy left to sob, until my tears ran dry.

I have had days where I have hit the bottom, where I felt below the bottom, where my life and my future seemed to be ripped out from under me.

In those moments my heart has cried out to God... and at least once my mind has tried to shut Him out where I told him I didn't understand him and I didn't want this and I didn't want Him. But deep down I knew my heart and so did God - I desperately wanted him and needed him regardless of my understanding him or not. Even in those moments, when part of me wanted to turn my back on God and become angry with Him, those desires didn't last. My faith prevailed and continues to prevail.


But I have been to the bottom. I have let the storm overtake me and let it nearly drown me. Thankfully, my God and my husband who love me, save me and pick me up off the floor - cause I can't do it myself. And thankfully these moments have been few and far between.


I have found a comfort and peace in my daughter's death and in my father's death that I didn't know could exist. I know that God loves me and loves them both. I know that God has a purpose and He is in control. I had prayed that His will would be done in both of their lives, and I believe His will was done. I know that God does not want us to suffer, but He will let us and, most importantly, He will be there with us. I know that God doesn't create every bad situation, but I also know that He CAN work good in any situation.

Those things I know and believe and those promises He provides in His word have carried me through and continue to carry me in my grief and uplift me and sustain me. I actually cried in the car the other day because of how overwhelming and amazing it is what God is doing in me. Have you ever cried because you can't believe how much someone loves you? I cried because I was overwhelmed by God's love. And I cried because I can't imagine where I'd be right now without my relationship with God and my faith... or rather I can imagine and that is an ugly, dark place...


But a few weeks ago I was struggling with something. Something I thought I knew about God, but soon realized my knowing wasn't knowing at all. It was an inaccurate perception I had.


One night before bed, I confessed my frustration with Josh. I repeated all those things above that I know to be true about God. And then I said, "But I don't see how my future is going to be good like God says it's going to be. My future is NOT good. My future seems HOPELESS. I don't have my daughter with me. I'm not the mother I wanted to be. I'm going to be living approximately half of my life in the next 20 years without you by my side (because of the Army and deployments). I don't have my dad to talk to or spend time with. The rest of my family lives far away from me. My future seems like I'm alone. I don't see what good there is at all."

Clearly, my statements bothered Josh. And bothered is probably too 'light' of a word to use. It's probably more like I scared him (my lack of faith) and hurt him (me saying I don't know what good there is in my future...when my future includes him).

I continued by saying something like, "I just don't see the good and the prosperity and the hope that God promises in my future."

Josh asked me where God promises that His plans for my future include 'good,' etc. He said he was pretty sure God didn't promise that and I said I was sure He did. So I searched for the verses that the were floating around in my head, and while I did that he gave me the examples of John the Baptist's life - he was imprisoned and beheaded, Paul, my fav person in the Bible, was arrested and imprisoned numerous times and spent the end of his life in a prison cell - those Christians did not have a 'good' end to their lives. Huh... forgot about that.


Here were the verses I was thinking of (even if you're not a Christian you'll probably recognize one of these if not both):


"'For I know the plans that I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future'" (Jeremiah 29:11 NIV).

"And we know that in all things God works for the good of those who love him..." (Romans 8:28).

Well, I read them to Josh and then realized he was right.

First of all, the first verse was God's promise to Judah in the Old Testament. While some could argue it applies to modern Christians as well, my personal take on it is this (and obviously there will be ppl who disagree, even Christians who disagree). First, if I try to apply this to myself, it is true that God does not want to harm me (as evidence by other scripture), but He does allow harm to happen - if He didn't there wouldn't be a thing called free will that exists in the world. He doesn't want it, but He allows it. Second, if I try to apply this verse to myself, what I think are God's plans to give me hope and a future are really what I was thinking of as my own plans. Those words don't mean that I should be hopeful because I will have a good, pain free, problem free life on Earth or that God will pour out all the blessings I can imagine on me in my future. This is where I had been mistaken. The hope God gives to me and others is Jesus Christ. The hope that I have is that Jesus Christ's death and resurrection allow me to have eternal life with God. My hope and my reward are in my future in heaven - not here.

Now to the second verse. In my mind it was reading more like "God works good in the lives of those who love him" and some may say well that's not entirely an incorrect reading. Well maybe I was reading it more like "God works MY good in my life." That's where I really become incorrect. God is not promising that I will have a good life in this verse. Really in this verse God's promise is that HE will work the circumstances in my life for HIS good. And that is a truth that has clearly been revealed in my life. God really is working His good, and that is really what matters.

So not to depress anyone, but God does not promise that your life will be good or that your future will be good if you love Him. In fact, I was reminded of all the places in His word that promise the opposite - that our lives will be full of troubles and suffering - especially for Christians (and yes sometimes he will cause suffering but that is another story) (John 16:33, 1 Peter 4:12-13, 1 Peter 2:21). Thankfully, God promises He will not abandon us, He will draw near to us, He will heal us, He will comfort us, He will work everything for His good, and more. When can we ever get relief from all the pain and sorrow in this world? God promises that in Heaven.

No one, not even me, knows what my future will hold - only God does. And I am finally to the point where I'm okay with that. I might not get any of the things I want. All of the things that could possibly devastate me in the future, just might.But that's okay because  this world is temporary and Heaven is eternal.

Within the past few days I have come to realize that my life actually is good. And Yes I even consider myself blessed. If you can't believe I'm saying those things - you're not the only one! But I can say that.


Also, as I am writing this I am reminded of some of my favorite quotes from The Shack so I think I'm going to write a separate post about that sometime soon...

Driving home from my exercise class last night, one thought filled my mind, and that one thought is how I will close this post: God is good!

Now I Lay Me Down to Sleep

On December 4, 2009 we learned of Hailey's fatal diagnosis, and we were moved to a private room where we were able to spend every minute with Hailey and truly enjoy her. We received a lot of information that day and had a lot of support services offered to us. (Talk about information overload and feeling overwhelmed!)  The palliative care nurse assigned to us told us that she could pretty much make anything happen for Hailey that we wanted - and yes, the idea of sneaking Opie into the hospital was discussed as a very realistic possibility. :) But thankfully we didn't have to do that...but they did order a birthday cake for us on her 1 week birthday :)

One of the pamphlets and services that was offered to us was something called "Now I Lay Me Down to Sleep." Now let me tell you, as a new mother who just learned that her baby had a fatal disorder, I was only able to read the title of organization before bursting into tears. The name was the saddest thing I ever I thought to myself... Thankfully the palliative care nurse explained the mission statement of the organization since I couldn't read it on my own:

To introduce remembrance photography to parents suffering the loss of a baby with the free gift of professional portraiture. We believe these images serve as an important step in the family's healing process by honoring their child's legacy.

With the news still fresh and feeling shock, we said we didn't know if we were interested, but took the pamphlet anyway. The next day I forced myself to look at the pamphlet. It was really hard to do. It made the reality we were facing sink in even more. It was sad to think of other families going or having gone through the same thing that we were facing. It was a sad, painful reality that is a part of our broken world. It was hard to look at many of the beautiful pictures in the pamphlet - so many cute, beautiful, fragile little lives... I cried as I looked and read. Josh had to gently tell me that many of the little babies in the pictures had already passed away. When I took a closer look I could tell. Of course it made me more upset and cry more. To be honest, initially it kind of disturbed me that there were pictures of babies who had already died. Don't get me wrong, they are very tasteful and incredibly beautiful and are clearly done to honor that child's life. But it was just 'weird' to me at the time. I didn't understand.

Now that I have experienced the loss of a baby and have become more aware and knowledgeable about others who have miscarried, had a stillbirth, or an infant loss, I have a better understanding of the importance of an organization like NILMDTS and why some families choose to have photographs taken with their deceased baby. That life matters and families want, need, deserve a record and a memory of that child's life - and NILMDTS does a truly beautiful and professional job doing just that and honoring that life.

Eventually after talking with Josh, we decided to take this opportunity. I think I wanted it more than Josh. But we both agreed to do it. On December 5, 2009, when Hailey was 4 days old, we had a photographer from NILMDTS come and take pictures of our Hailey and us with Hailey. I've included some of the pictures at the bottom of this post. My blog banner and the photo of Hailey's foot with our wedding rings in the right hand column of my blog page are from NILMDTS.

When the volunteer photographer came, we asked that our visiting family members leave so that we could have privacy while taking our pictures. When the 'photo-shoot'  in our private room started, it was really challenging to smile for the pictures. How do you smile and pretend your happy when you've just learned that your baby was going to die? It was hard at that point to smile in celebration of Hailey's life when being so stricken with sorrow at the same time.  I managed to muster up some smiles - I was a proud momma regardless of the circumstances. But Josh had a tough time smiling...understandably so; it was hard to smile that day to say the least... (plus he had tried to get a haircut all day but no places were open which was frustrating for him)... But in the end we managed to have a beautiful session with Hailey.

Hailey started off the session by sleeping peacefully, but as the session continued and more time passed and more flashes went off in her face, she slowly started to wake up. I was thankful for that because we got some with her eyes open! Eventually though as time and flashes continued, she got a little fussy and had to be soothed with a paci and dad's fingers ... we have some NILMDTS pictures of those moments too. :)

Also, I am so happy that the photos do not have her with her oxygen and the nasal cannula, and it is just her in her beauty with nothing obstructing that. They are pretty much the only pictures we have of her without her nasal cannula in. I am truly thankful for NILMDTS and the beautiful photographs we have of our daughter.

Haily ~ December 5, 2009 ~4 days old

Photographs by Now I Lay Me Down to Sleep

Heartwarming mail

Well this week has been a somewhat stressful week, and I've unfortunately found myself disappointed in people quite often. Here's my little bullet list of the current stressors in my life (kind of arranged from serious to silly):

• Hailey's passing


• My dad's passing (and dealing with paperwork and things associated)


• Difficulty getting a referral from our insurance to meet with a geneticist (we finally got it!!)


• Dealing with the owner of the house we are renting who simply makes no sense to me (we keep getting phone calls to show the house since she's put it on the market even though we have 13 months left on our lease - I don't appreciate being bombarded with phone calls and the idea of strangers looking around our house and in Hailey's room so soon after her passing)


• Struggling to lose this last 10 lbs of my baby weight (I'm working out 5 days a week and taking Opie on walks and eating healthy yet I still manage not to lose weight!)

Every day I obviously have a choice as to whether I let those things and others) stress me out or not. Thankfully God is really helping me deal with the first two listed. And thankfully, the third stressor has been solved. And the last two are really insignificant in the grand scheme of things...but unfortunately, this list of stressors has gotten the best of me a few times this week.

So, when I received a package in the mail from my brother today, it was just what I needed after having a somewhat stressful and discouraging day. It was very heartwarming mail - just what I need in the midst of the coldness I'd been encountering this week.

My brother secretly had been mailing out letters to people he knew explaining what had happened to Hailey and how the Children's Hospital helped us so much and asking them to prayerfully consider donating to the Children's Hospital in Hailey's name (this was one of the organizations we chose to have people give to at her memorial service). He, like me, wanted to do something productive with our grief and remembering Hailey's life that would make a difference. And he did it.

In his package he shared with me a letter he sent out to people requesting donations amongst a couple of other things. And the most special item in the package to me, was this plaque:

Of course, seeing and reading the plaque made tears well up in my eyes. It warmed my heart that my brother did this for his niece. It warmed my heart to know that people are choosing to remember and honor Hailey's life in this way. It warmed my heart that this remembrance of her goes to a good cause and will help others. It warmed my heart that there are caring, compassionate people out there and not everyone is difficult and cold-hearted.

It's good to have a reminder like this to bring my perspective out of this pessimism I've been feeling lately.

I thank my brother for raising awareness about Hailey and doing something to honor her and help others. Words can't express how much it means to me...

Healing Touch

Have you ever heard the phrase 'healing touch'? It suggests that physical touch or physical contact can heal. Hailey's life taught me the truth behind this common phrase.

In the first days of Hailey's life, she underwent surgery,  she had a contraption put on her stomach, she was poked and prodded everywhere with needles as doctors and nurses tried to find good veins for putting in tubes and IVs and drew blood and so on,  she had a blood transfusion, she bruised, she swelled, she would have experienced pain had she not been under the affects of morphine. Obviously, no one wants this kind of life for their child. (But I will say, this life, is better than no life at all... and as you will see in Hailey's case, this can be turned around with a little healing touch, and faith).

As I've explained in prior posts, during those first few days, before we knew Hailey had Trisomy 18, she spent nearly 100% of her time in the NICU sleeping on her back with tubes attached to her everywhere. She stopped breathing many times and sent her monitors into a beeping frenzy often. We couldn't hold her. All we could do was talk to her and gently caress her skin. Sometimes we would have her hold our fingers in her hands. But it wasn't enough. Life was painful for all three of us.

Then came the time when we learned she had Trisomy 18, and we decided to stop all medical treatments and interventions.  It was a difficult decision, one we did struggle with, but Josh and I came to an agreement and made the decision we knew we needed to make for Hailey. We couldn't fix her though we desperately wanted to, we couldn't truly treat what was wrong with her, and in the end, nothing would save her life. Very hard realities to accept, but we both believed in quality over quantity in terms of Hailey's life. We wanted her to have the best quality life possible, even though it may be shorter without treatments and interventions, rather than have her live a poor quality of life for many days.

At that point for us, we were restricted in our physical contact with her, and we were restricted by visiting hours and in the number of visitors allowed. And for Hailey, she was attached to so many tubes and was already physically being put through more than one could imagine. It was not quality for her or us. We wanted Hailey to feel love. We wanted to give her our love. We wanted her to experience physical touch through kisses and cuddles every hour of the day. We wanted to be with her and be close to her. We didn't want restrictions. And we didn't want to put her little body through any more pain or stress that future surgeries and things would have led to.

We were told that if we continued with 'treatments' and interventions, that she would have another surgery and have to be put under anesthesia. The doctors told us that they didn't know how she would respond and that surgery like that always has risks even for a healthy baby. They said that there would be a good chance that Hailey would never come off of the ventilator that she would be put on during the surgery. Which meant we would never get 'her' and she would never get us. She wouldn't be alert. We'd never get the chance to take her home. She could be in the NICU her entire short life in a vegetative state. And we did not want that for her, or for us.

Most importantly, we were able to make the decision we made, and be confident in it, because of our faith in God. We knew Hailey was in His hands from the beginning and that with this decision of ours He would either heal her or take her on His time. We felt confident that we did what God wanted us to do as His caretakers of His child.

We had seen many of the babies in the NICU who were there in an almost vegetative state, alone. One of the palliative care nurses who supported our decision talked with us about how difficult it was emotionally for NICU nurses to be around those babies. The parents simply stop coming. They get drained. They have to get back to work and other things. It's absolutely heartbreaking. The little African American baby boy next to Hailey never had a visitor the entire time we were in the NICU with Hailey, which was days...not one visitor...

As I've mentioned many times before in early posts, the minute we decided to stop treatments and interventions we were moved to a private family room with no restrictions for visiting. The doctors didn't think she had much time left. Her breathing attacks had been frequent, and it was likely she could have one at any moment and pass.

But to everyone's surprise... Hailey did a million times better once we stopped all the 'treatments' and 'interventions' she had been having. We had to agreed to the administration of morphine as we felt was needed for her pain and the use of an IV for fluids and nutrients. Well, Hailey did so well that she got completely off of the morphine and didn't seem to be in pain at all so she didn't need any more of it. She did so well that she started feeding on her own with a bottle.

It was almost like the things that were trying to help her were actually making her worse.

Why was she so much better?

Healing touch, and prayer of course.

Once Hailey was left completely in God's hands with no human intervention and she could experience our touch and physical love 24/7 - she improved drastically. They thought she'd do worse, she did better. She went from a drug-induced, sleepy-headed baby, who was in pain and attached to many tubes and devices to an alert, happy baby once we were free to touch her and love her like we wanted.

Once we stopped treatments and interventions, we were able to hug Hailey and kiss her and hold her and rock her and show her all the physical love we wanted. We were able to pour out the love we had been longing to pour out on her. Since we had thought she might have a breathing attack and pass at any moment, we had her held at all times because we wanted her to go in the arms of someone she loved. She switched off from being in the arms of her mom, dad, grandmas, grandpas, great-grandparents, aunts, and uncle. She was always kept close to us. She was always watched over. She was literally held for days until she did so well that we eventually went home!

Before I started writing this post I came across this quote:

Eventually you will come to understand that love heals everything, and love is all there is.
--Gary Zukav

Clearly, Hailey's story proves this. God's love and the love her family - His loving touch and our loving touch - healed her so much that she was able to come home and spend almost a month with us there!!

Also, the story of my life since Hailey, the story of my grief, proves this quote as well. I have been doing pretty well the last 2 weeks. It's still hard, don't get me wrong, but grief has not knocked me down and left me weeping and paralyzed as it has so many times before. I feel a much greater sense of comfort and peace. I didn't expect me to be in this place so soon, only 2 months after Hailey passed. But I am. And the only reason for that is because I am healing.

God doesn't take away pain and suffering. He promises our lives will be filled with troubles. But He also promises that He will be there with us during the troubles. He will heal us - and that is what He spoke to my heart that day I struggled so hard to understand why this was all happening. I was so afraid of my grief and what it would be like before Hailey passed. God didn't promise that He would take my grief and suffering away. He promised He would heal me. And He is. There is no other explanation for why I am the way that I am right now.

It is my turn to experience God's healing touch. He is able to heal my broken heart because I have given it to Him and entrusted it to Him.

The quote says 'love heals everything' and 'love is all there is' - it is true - God is love. God heals everything and God is all there is.

Please, Be Not Afraid...

Tonight I was 'surfing the web' looking around at infant loss and grief resources. I came across a website called "A Heartbreaking Choice" ...  here is a snippet from their homepage:

We realize that all parents make a loving choice, one they feel is better for their baby. Regardless of the fetal anomaly found, the decision to end a pregnancy is always a difficult one.

And listed below on the homepage:  "New Sections - Trisomy 18" - a page that has 6 stories of aborting babies with Trisomy 18.

My heart breaks and my stomach aches...tears are filling my eyes and I want to scream out. I have always known that many parents choose abortion when their child is given a lethal diagnosis, but seeing this online made it all the more 'real.' And it's all the more personal to me to see these Trisomy 18 stories, I think of Hailey, my precious, beautiful Hailey...

I can't imagine what someone must have been told to be persuaded to kill their child...to think that they argue it was out of love because they didn't want their child to be in pain... no one knows if their baby would have faced pain, no one knows what kind of life the baby would have had, no one knows if the prenatal diagnosis was even correct, they can guess but they cannot know, do they not think that the baby experiences pain when it is killed, do they not think that the baby could have had a wonderful, loving, joyful life even when facing 'anomalies' -they can! yet they give that child no hope at all... they have no hope....they are fed so many lies....

It's kind of funny that tonight is the night Hailey's story, "She was Always in His Hands: Hailey Marie" got published on Be Not Afraid. I was going to write this post only about that, but now it's changed...my heart started off so excited and proud to share this with everyone - and I still am excited and proud - especially now that I've seen this particular website that's out there. But this is no longer the upbeat post I wanted it to be...instead my heart breaks more right now than it has in awhile. I can only pray someone faced with a lethal prenatal diagnosis would stumble upon Be Not Afraid and Hailey's story before coming across the other pro-abortion site....oh how different those two websites are....

A Heartbreaking Choice quotes this:

...it is estimated that between 80 and 95 percent of parents receiving a severe prenatal diagnosis choose to end the pregnancy...

80 to 95%...wow....I started to write a huge long post about my beliefs but deleted it all. I just can't. I am too overwhelmed right now...So I will simply say this - ALL life is precious, deserves a chance, and needs to be protected...yes ALL. PLEASE...BE NOT AFRAID...

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"Each child is sent into this world by God with a 'Unique Message' to deliver, a new personal act of love to bestow" -John Powell, S.J., Professor of Theology

 

"A person's a person no matter how small" -Dr. Seuss

2 Months in Heaven

Today Hailey has been in Heaven for 2 months. She's been in Heaven longer than she was on earth, and that's a hard fact to accept and one that will always be.

I have to say that God has really blessed me this week. After my post "The Great Sadness..." I have really been actively checking myself to see where my mind is at and making sure it's in the present the majority of the time. And I think because I have changed my perspective, God has enabled me to have a good week in terms of my grief.

I wouldn't say any day this week was necessarily joyous, but I guess I would say that I have felt a sense of contentment that I haven't felt in a very long time. Dare I say it...things almost seem 'right' again...almost.... things have felt so miserably wrong for so long. But that feeling is changing. At least this week it is.

So on 2 month anniversary of Hailey's death, I'm feeling okay. I miss her every single day, and I still think of her often throughout my day. But my grief has no longer locked me down on the ground. I'm up and moving again, and I hope to stay that way. Although I am in a bit of that suspense stage, wondering if or when it will hit me and take me down again...

I will admit, I haven't watched a video of Hailey in a very long time. I have kind of been avoiding it for awhile - not sure if I could handle seeing her so 'alive' again. I remember at her memorial service thinking and saying as I watched the videos of her on the TV that I could watch her forever. Well, that changed in the last few weeks. It became harder to do that without grief overwhelming me. It's funny how some days a picture or video can bring me all the joy in the world and warm my heart while other days the same picture or video can bring me sorrow and bring back that excruciating, dull empty ache in my heart. As I've said before, grief is a confusing thing.

One of the things that made this week such a good week for me in terms of my grief was a dream I had. It was the most wonderful dream I have ever had in my life. It was soooo real. I wasn't going to share about it in my blog, I was going to keep it as a private thing that I only shared with Josh. But I want to write about it now because I want a record of it - so that I can always remember this dream because it was so very wonderful. Five years from now, I would like to think back on this dream.  It probably won't sound like much to you, but I know that whenever I re-read this post the images and feelings and sounds and smells from the dream will come back to me - they will be more than just words to me.

I dreamed a short and simple dream about Hailey. In it she was so healthy and happy. She looked like maybe a healthy 2 or 3 month old, and she was in one of those bouncer swings for babies that you can hang in a doorway. I was bouncing her and she was smiling at me and giggling away. Her giggles left her with some shiny baby drool on the side of her face that I gently wiped off. At the end of the dream, I held her little head of soft, fine, brown hair in my two hands, kissed the top of her head, and breathed her in. The dream gave me her perfect baby smell. Now I don't know about you, but I don't usually recall smelling in my dream...but I did with this one and it was pure bliss. The dream was simple as I said, not much to it. But seeing Hailey so healthy and happy and glowing, interacting with her again, hearing her baby giggles (that I never was able to hear while she was here), touching my lips to her soft hair and skin, and smelling her wonderful scent was soooooo wonderful and sooooo real. The dream reminded me that that is what she is like in Heaven - she is healthy and warm and so very full of joy. I'm so thankful to have had a glimpse of that. That one little dream made my week, maybe even my month...

This week I went to the craft store and bought tons of scrapbooking supplies so I can finally start working on my scrapbook of Hailey. I wasn't sure what feelings would come up during that trip to the store, but thankfully I was fine. I think I almost bought the store out of every baby girl scrapbooking item there was. I am going to start it with the day I found out I was pregnant and chronicle the milestones we/she hit during pregnancy, birth, and her short little life through to her memorial service. I am looking forward to making Hailey's scrapbook even though I'm sure some days when I work on it it will be hard for me. But I think it will be therapeutic at the same time. It saddens my heart that her entire life will be one scrapbook and I don't have other things to include in it like first steps, first tooth, etc., but I can't wait to honor her in this scrapbook and have it for the rest of my life.

If you are reading this, please keep me and Josh and our families in your prayers and remember Hailey today. While today is a good day for me, not every day is this way. Every day is a new day that I need God to give me peace, comfort, and strength to get through the day so that grief does not cripple me. So just because I'm doing good today, doesn't mean it lasts forever. We still need prayers and prayer is a powerful thing. Thanks!

~    ~     ~     ~

To my sweet baby in Heaven, Today I take many of the images and sounds from my dream and I use them to imagine you in Heaven. I don't know what Heaven will be like, but I imagine it is like a better, perfect version of Earth with more new miraculous things for us to enjoy. I imagine that in Heaven you are outside, the sun is shining its warm rays onto your sweet little face, the skies are blue, the long green grass flows in a warm, light breeze, and there are countless flowers of every color imaginable. You are smiling brightly, your skin and being are glowing in the joy and love of God. You are giggling and laughing and playing with your Father. Maybe Jesus picks you up and throws you in the air like many Fathers do causing you to continue giggling. Maybe you are cuddled up against Him as you both lay in the field looking at the sky sharing in a some special secret moment smiling, full of love. I mostly only see your face when I envision this ~ you are still a child, but I can't tell if you're a baby or a toddler or older than that. But it doesn't matter. While I miss you dearly and long to be with you with all of my being, I know you are truly in a better place and that you feel no pain and suffering. You are free, you are healthy, you are happy, you are loved - all perfectly. Hugs and kisses. Mom.

March:Trisomy Awareness Month

March is Trisomy awareness month!!

If you know me and/or have been following my blog, you know that my daughter Hailey Marie had Trisomy 18.  You may also have a general understanding of the genetic disorder by knowing about Hailey's life and reading some of my other posts. So some of you are already a little aware of Trisomy 18! But this month I challenge you to become more aware and spread the word about Trisomy 18 and Hailey's life!

For this post I'm going to share some basic information about Trisomy, my experience with Trisomy 18, and some resources about Trisomy 18 and the other Trisomies.

About Trisomy

Trisomy refers to the presence of 3 copies of a chromosome instead of the normal 2. The presence of the 3rd chromosome interferes with normal growth and development. Three of the most common Trisomies are 13, 18, and 21 (there are other more rare forms of Trisomies that I will not get into). These are considered genetic disorders, and occur at conception. Some Trisomies are inherited from the mother or father, while others are not inherited at all but happen spontaneously. Generally speaking, as women get older their chances for conceiving a baby with Trisomy increases.

Trisomy 21 is the most well known Trisomy - it is Down's Syndrome. Trisomy 21 is not a lethal genetic disorder. Many Trisomy 21 babies go on to live very long and full lives although they may have mental and physical disabilities. Trisomy 21 occurs in approximately 1 out of every 800 to 1,000 babies.

Trisomy 13 is known as Patau's Syndrome. Trisomy 13 is a lethal genetic disorder, meaning it is not compatible with life. 80% of babies diagnosed with Trisomy 13 die in the first month. Statistics show that Trisomy 13 occurs in about 1 out of every 10,000 babies or even 1 out of 16,000 (depending on the source).

Trisomy 18 is known as Edward's Syndrome; it is the second most common form of Trisomy after Trisomy 21. Trisomy 18 is a lethal genetic disorder, meaning it is not compatible with life. Trisomy 18 is three times more common in girls than boys. Trisomy 18 occurs in about 1 out of every 3,000 babies or even 1 out of every 6,000 (again, depending on your source). 50% of babies with Trisomy 18 that make it to term will be stillborn. Less than 10% of babies born with Trisomy 18 make it to their first birthday.

Trisomy can come in the form of full, partial, or mosaic.

Full Trisomy means the 3rd copy of the chromosome occurs in every single cell of the body. This type of Trisomy is not inherited and is the most common.

Partial Trisomy means there is only a part of the 3rd copy of the chromosome present in the cells of the body. This form tends to be very rare and could be hereditary.

Mosaic Trisomy means the 3rd copy of the chromosome occurs in some cells in the body. This form is also very rare and is not inherited.

Trisomy babies face many abnormalities, many of which are not compatible with life like those found in Trisomy 13 and 18. No two babies with a Trisomy are identical - not every baby faces the same abnormalities as another. Some may have a large number of abnormalities while others only a few.

Trisomies can be diagnosed prenatally and treatments vary case by case. There is no cure.

My Experience with Trisomy 18

My prenatal screening to detect whether Hailey had a Trisomy was incorrect. The screening was negative and indicated Hailey was a healthy baby. A few days after Hailey was born, she was diagnosed with full Trisomy 18 through the use of a FISH test. Hailey lived to be 1 month and 5 days old. Unlike many babies with Trisomy 18, she was able to get out of the NICU and come home with us.

Here are most of the affects of Trisomy 18 on Hailey (that we were aware of): Hailey's left hand and wrist did not develop correctly, but she could use it. She had long fingers, usually clenched fists, small facial features, low set ears, a skin tag on her face, webbing on her neck and a few other parts of her body, part of her intestines on the outside of her body (omphalocele), and apnea. In speaking of these abnormalities, Hailey is probably considered more blessed than most, as many Trisomy 18 babies also experience heart problems and problems with other organs; many also have cleft lips and rocker bottom feet.

To learn more about our experience with Hailey and her Trisomy 18 please read my other posts - you probably want to try any of the posts categorized as "Trisomy 18" first.

Besides all of the facts and statistics I have learned about Trisomy 18, Hailey's life taught me much more. If she had been diagnosed while in my womb, no one would have given her much of a chance at life. When she was born, the doctors were not hopeful for her suggesting she might go at any moment. Not many have hope for a life like Hailey's, but we did. While Trisomy 18 ultimately took her life, she lived a longer life than most would have expected and she lived a happier, fuller life than many could have imagined. While others may have labeled her abnormal, not normal, disabled, defective, and so on - she was none of these things to me; my definition of normal was redefined. While others may have seen her left arm and hand and skin tag and her tummy as ugly - she was not to me; my definition of beauty was redefined. Hailey's life was not a burden as some may think; her life was a blessing. Her life was beautiful, precious, and treasured. To read more about my thoughts on Hailey's life please read my post titled "Hailey's Purpose."

I do not believe in research for Trisomy 18 to understand the cause and find a cure. I believe God created Hailey the way He wanted her to be. I believe that this type of research would get into genetic engineering and 'playing God' type stuff which I do not believe in. Trisomy 18 is not a disease that can be cured; it is genetic and happens at conception. I do believe in awareness and raising support for families who have children with Trisomy 18. If diagnosed during prenatal care, families need education and support. Many doctors suggest and even encourage termination of the pregnancy when diagnosed prenatally. Therefore, families need all of the information and encouragement they can get. Whether families find out during pregnancy or after, they need the love and support of family and friends and other families who have experience with Trisomy 18. They need to be aware of those communities out there, whether it's online or a group in their town. They need information on how to care for a baby with Trisomy 18 (information about NICUs, Hospice Care, etc.). They need information on what other services and opportunities are available to them (ideas for making memories and having the best time possible with their baby). At some point they will also need help and resources dealing with the grieving process and infant loss so that their grief is healthy and they can find the joy in their sorrow.

Therefore, I personally am not considered with research to 'solve' Trisomy 18, I am believe in raising awareness so that families with babies who have Trisomy 18 have access to the love, support, and resources they need to make the most of the time with their precious Trisomy 18 babies. I also believe people who don't have experience with Trisomy 18 should know what it is.

Resources

What is Trisomy 18?

Be Not Afraid

Trisomy 18 Medline Plus

Trisomy 18 Genetics Home Reference

Trisomy 18 Wikipedia

Trisomy 18 Resources from SOFT

...more to be added later...I am planning on making this a separate page of my blog when I have time.

~In Honor of Trisomy Awareness Month and Hailey Marie, Please Share This Blog Post with Others~