But it all didn't matter. In the end, I was not in control of my daughter's creation or development or even life. God was.
In all honesty, having a baby that was 'retarded' or that had mental or physical problems was probably one of the things I feared and dreaded happening to me (or my baby) the most. Truth be told, I didn't want a 'retarded' child or a child with disabilities. Not me. I didn't deserve it. I didn't want it - for me, for my baby. I wanted her to be healthy and have a normal happy life. And I tried to do everything I could to make sure my baby was healthy and I didn't have that problem. Statistics were in my favor after all...
My greatest fear was realized the day Hailey was born. Initially, we didn't know what was 'wrong' with her, but the first thing I did know was that her left arm/ hand did not develop correctly and that she also had potential problems with her left hip and leg. Physical disabilities. I remember the cloudy thinking (due to the meds wearing off) in the hours after giving birth to her that it was okay if she had crippled arm or leg. That's no big deal. She's healthy otherwise...so I thought. And I remember thinking how crazy I was for worrying that I couldn't love my own child as much as I should if she had a disability...
The picture below is what she looked like the first time I saw her. Definitely not the dream that every mother has in her head of what her beautiful baby will look like. To all of you reading this out there, you probably almost cringe at this picture ... because a part of me always does ...
but I can't explain what I felt the moment I saw her and held her. She wasn't a 'normal' baby. She wasn't a 'healthy' baby. And she was going to have problems. My worst nightmare realized....But in that moment, I could not have loved her more. She was absolutely beautiful - even with all of the bandages and cords and things attached to her ...and her curled up little hand... I guess it's only something a mother can feel and see...but I loved her with my entire being and thought she was the most beautiful thing in the world...
I almost laugh back on it now thinking how I told God I was 'fine' with it if Hailey had physical disabilities. How selfish and shallow am I to say or think that? And then to learn later what was really 'wrong' with her - a chromosomal disorder - possibly Down's Syndrome or one of the other Trisomies... a 'retarded' baby...and I cringe when I write these things because I hate that label but that's the label I used in my head. I remember I kept thinking, not me, not us, not our baby. We didn't, she didn't 'deserve' this... we did all we could...we're 'good' healthy people...not us! like someone else 'deserves' this more than we did. ha... i really can't believe my own thoughts, they were so terrible...and every day I ask God and Hailey to forgive me for those thoughts and fears I had when I was pregnant...and I thank them for showing me how very wrong I was in all of my thinking...
Well Hailey ended up having one of the worst genetic disorders out there because it was lethal. There was no way she was would survive to be more than 1 year old no matter what we did. She had more health problems than I could have imagined my baby could have. What happened to Hailey was probably my worst nightmare, like I said. But that was my thinking when I was pregnant. Once I laid eyes on my beautiful baby girl...she was the best thing that ever happened to me. She wasn't a nightmare. She was an AMAZING blessing.
Many people find out that their child will have one of the Trisomy disorders while they're pregnant. And unfortunately, many of these parents will choose to have an abortion... All I can say to anyone out there who might be in a similar situation: your child is not 'retarded' or any less of an amazing baby than if s/he was a 'normal' baby. Your child may have problems and it may be very difficult. But s/he is a child nonetheless and is a beautiful creation - even if it's not in the 'stereotypical' sense. You will fall in love instantly. And your baby will bring you more joy than you could ever have imagined. But of course, you will experience more pain and sorrow than the average new parent, but the joy and the love overwhelms and conquers those negatives...
I also have to say...and this is me being honest and running the risk of offending people... but I've been looking into all those Trisomy organizations and foundations out there...and honestly, I haven't found one I like or agree with entirely. I really struggle with this. My problem with all of these groups is that most of them have in their mission to find a cure for genetic disorders like Trisomy 18. You might think I'm crazy that I don't want someone to find a cure for what my daughter died from. But I don't.
There is something 'wrong' in the thinking behind these groups that want to find a cure. Trisomy 18 is a genetic DISORDER- NOT a DISEASE that can be cured. Trisomy 18 occurs when life is created - when egg meets sperm and genetic material forms new life. Because of my faith, I believe that God creates all life - he knits together all those inner delicate parts of our body (like the Pslam says). Josh and I had no control over how Hailey was created - even science admits that Trisomy 18 is 'spontaneous' and is NOT the result of something the parents did or did not do. It is totally 'random.' But God isn't random. God is perfect in His plans. And I honestly believe that God created Hailey with Trisomy 18. I cannot find myself supporting an organization that wants to 'cure' Trisomy 18 or other genetic disorders. Because that gets into genetic engineering and manipulating God's creations and other things that I personally do not believe in.
God is in control and he was in control the day and days he created Hailey in my womb. Hailey was God's creation. God and Hailey taught me a lot (and I will do a separate blog on this another time..but for now...) my ideas of beauty and love definitely changed because of them.
So of course I wanted a healthy, 'normal' baby who I could raise and see become an adult...don't get me wrong... there are still days I wish that would have happened...and there are days where my life feels like a living nightmare...but in the end, it's not. My life is better because of Hailey. And God had a different plan than my own, and I trust in His plans for my life and for Hailey's. We don't always understand His plans, but thankfully He has been showing me a little of what His plan was with Hailey's life...
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To my Hailey,
You were an absolutely beautiful baby girl with an amazing personality and bright spirit. (You were my very own Hailey's comet, a shooting star in my life). I thank God for blessing me with you every single day. You were simply awesome. You brought (and still bring) me immeasurable joy and love. Thank you. And thank you for teaching me so much...who knew that a child who only lived 36 days could teach an adult so much... but you did. You changed my life forever and I am forever grateful to call you my daughter. I love telling people about you and bragging about you. I try, but words just can't express how awesome you are and how much I love you.
Love always, your Mom
Krissy, I couldn't agree more. The genetic engineering that they're starting to do is so wrong, and although those would-be parents lose the pain they would experience, they also lose all the joys and love and changes that a baby with a disorder would bring. I've talked with my high school students about this several times and always come away from the conversation so inspired by their idealistic comments. However, while it's easy to talk about it, I hope that if I were to ever find out that I would have a disordered baby, that I will remember my true opinion on this and not take the easy way out.
ReplyDeleteThanks for sharing your blog. Even though I don't really know you, I'm learning so much from you.
-elyse
Your fears were normal, and you are one of the lucky few who were able to look at some thing that others would have viewed as a tragedy or something that was unfair and turn it into something that changed your life for the better. Not everyone has that gift-I've seen how disabilities, dashed expectations, can ruin marriages and make everyone involved miserable. But you didn't let that happen to you and Josh, and you gave Hailey a beautiful life full of love before you let her go on to Heaven. You had to deal with something absolutely devastating and the fact that you can look on it at all with joy and with hope and love is a blessing and an inspiration to everyone who knows you, so thank you for that.
ReplyDeletePS-you made me cry in my class yesterday :-P
When the doctors thought Cole was coming early, so many people said "I'll pray that he doesn't come early" or "I'll pray that he's healthy." That never sat right with me, until I finally said, 'please just pray that I have the strength, courage, wisdom, etc to deal with whatever is supposed to happen.' For a while, praying was hard for me, until the prayers became less about pleas and more like conversations. You are one wise mama Krissy. I am thoroughly enjoying your blog.
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