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.
Tuesday, March 9, 2010
Sunday, March 7, 2010
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...
*****************************************
"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
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...
*****************************************
"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
Saturday, March 6, 2010
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.
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.
Friday, March 5, 2010
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
Trisomy 18 Genetics Home Reference
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~
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