So I was given this book last week at one of our appointments at the hospital. Look! It’s a National Best Seller! Yippee!
Do you see that title? Surviving the Death of Your Baby!
What the what?!!!
I’m not saying this book isn’t deserving to a be a National Best Seller. I am sure it is a great read and has been helpful to thousands of grieving parents. But wouldn’t you say this book was written for parents of a baby who has, oh…I don’t know…already died??!? Why am I being given this book right now? I’m barely 30 weeks pregnant.
Don’t get me wrong. I’m all for being “prepared” — but to be given a book like this, right now, when I still have a very much alive and kicking baby growing inside of me…
Yeah, I don’t think so. I am not going to read this book right now. Shoot, I’m not even going to open it.
I don’t need this book yet. It will just make me sad. I don’t need to be sad right now while Aaron is still living. I have not given up hope for this little baby of mine. For all I know, I might not “need” this book until six months after he’s born, or a year after he’s born. Or maybe longer. I mean, who really knows when this little one will pass away? I’m meeting more and more families of kids with Trisomy 13 whose children live well beyond what the statistics say.
Why can’t Aaron be one of those?
Of course it’s possible that he won’t be one of those. He could be like so many others who do pass away hours or a few days after birth. I am well aware of that. But if I don’t have hope for him, what else is left? Acceptance of his death? How can I accept something that hasn’t happened yet?
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life. Proverbs 13:12
I do realize that acceptance is important. To live in denial is never healthy. For the record, I am all for acceptance: I accept that my baby has Trisomy 13. I accept that his life will be shortened because of this. I accept that he will have many disabilities. I accept that his care will require a lot of time and dedication from me and my family. And I accept that along with the joy he will bring, there will also be sadness. But do I accept that he will die soon after birth?
No.
I accept that he might die soon after birth, but not that he will. There is a difference. Hope is that difference. I have hope that he will make it out of the hospital and will be able to live with us in our family home. For a time. How long of a time? Two months? Six months? A year? I have no idea. But I can’t read a book about the death of my baby…when he hasn’t died yet. That’s almost like reading How to Survive Your Divorce on your honeymoon. How many of you would read a book like that on your honeymoon? After all, the current statistics that a first marriage will survive 10 years is only 0.66% (1 in 15 marriages). So knowing those statistics, would you put that book down on your wedding gift registry? You know, just so you could prepare yourself?
Okay, so I know that example is not exactly the same as with a baby who has been diagnosed with a life-limiting condition. But still. Hear me out on this.
The way I see it, Aaron has survived this long when so many of these babies pass away in utero. He has a healthy, strong, perfectly formed heart. He is a little fighter! Doesn’t he deserve a mama who will fight along with him, in spirit? Or should he have a mama who has already given up hope and is planning for his death before he even comes out of the womb?
I’m thinking he needs me to fight for him, to not give up hope. He needs for me to have hope and faith, and to surround myself with people who believe as I do. Anyone who does not have hope for my baby and who thinks it would be better if he died rather than live with Trisomy 13 should not be around me or my family at this time. The negativity would be felt, and it would be very hurtful. It would bring me down. And I can’t be down right now, or when Aaron is born. My little boy needs for my hopes to be high. He needs me to fight for him. And he needs me to not read a book that’s all about the death of your baby…while he is still very much alive and has a chance at life outside the womb.
Sorry, I’m just not going to do it. I can’t see how this book will help me in any way right now. It just feels so… wrong. It really goes against my mommy instinct, and that instinct has never lead me astray in all my 22+ years of being a mommy. Right now that instinct says to have faith, to have hope. That is where I want my energy to be put right now: in hope and in faith. Not in death.
So I will put this book in the back of my closet. For now. And I pray it will stay back there long enough to gather some dust.
Just linked up with Moments of Hope and read your post link up. What a well written heartfelt dilemma. I will look forward to reading more about baby Aaron soon after this posting this comment.
Blessings,
Linda Darlene
Praying for you, baby Aaron, and your family … and believing in miracles!
Blessings and smiles,
Lori
Thank you, Lori
Katrina,
I am so honored that you chose to share this post with us at Moments of Hope. I remember reading it back in September and your story so touched my heart. You are a courageous Mama filled with hope. I am so sorry you lost your sweet baby boy. There are no words. My heart and prayers are with you. If I could reach through this screen with a hug, I most definitely would.
I hope you join me again this coming Monday!
I agree, Trina! Well written!
Thanks, Mark!
Hi Katrina,
I stumbled across your blog from Kelle Hampton and immediately felt a connection. I have nine children with the last two being born in my 40s (42 and 45) – sort of wonderful little surprises (okay …not too old to have another…who would have thought we could squeeze in another or two?). Our last wee boy has, I guess, the luckiest Trisomy – 21. We had strong indications during pregnancy (although no actual testing). Hope played a big part in the last stages of pregnancy – hope that he may not have Down Syndrome and if he did, hope and faith that he would be delivered safely to us. When we talk now of our hopes for Michael’s future and the life he will lead, I sometimes feel that people think I’m in denial with regard to his Down Syndrome. I’m certainly not (I’ve always been a pragmatist) but I will not allow a diagnosis to dampen our hopes and put any sort of limit on Michael’s future happiness.
Hope for our children is what us Mamas do best for our children – it runs strong within us. I can’t think of anything more at odds than reading THAT book while feeling your little one kicking around inside. Your hope is strong and healthy and it does make a difference to you, your family and little Aaron. Thinking of you and adding you to my prayers here in New Zealand.
Hi Jodie,
Thank you for your comment. It’s nice to hear from another mama of “many” —
You know, it’s funny. I have never wished for a Trisomy 21 baby….until now. I sometimes think to myself, “If only Aaron had T21 instead of T13…then he could stay with us longer.” It definitely is the “luckiest” of the Trisomies. And you are right: hope for our children is what us mamas do best. Absolutely! They need us to have hope for them, for them to live their best life. Our belief and hope in them does make a difference, in so many ways. It is healthy, it’s natural, and it’s right. Thank you for your prayers!
Treene… I’m so, so, so proud of you! YES!!! If you had believed what the doctors said about Audriana, poor Audriana wouldn’t we speaking or walking right now! You never gave up hope and sought the Lord’s help with her care. This is the same Mommy perseverance and hope you showing toward baby Aaron! I love you. I love your faith and hope. It’s so refreshing in today’s ‘lack of faith’ world. U got this.
Thanks, Kath!
I do think I learned a thing or two with the experience we had with Audriana. I learned that I needed to do my own research, because doctors are trained one way and so are traditional therapists, and I knew in my heart of hearts that what they were suggesting was NOT right for Audriana’s care. Having true faith and hope for Audriana and not listening to the naysayers is what eventually helped her recover as much as she did. I will give Aaron that very same hope. He deserves no less from me.
Wow, how horrible to be given this book now. You’re so right mama, never lose hope. Your little Aaron is a fighter and he will show them all! *HUGS* to you strong mama.
I’m sure they thought they were being helpful. But really. The book “gift” could have waited, right? It’s like giving a newly diagnosed cancer patient a book titled, “Walking Through Your Final Days with Cancer” or something like that. Would they strip the hope from new cancer patients by giving them a book like that? I don’t think so.
Just found your blog on the Facebook trisomy 13 site and I’m going to be praying for you! My daughter (trisomy 13) just turned 40, yes 40, in January. Please give your baby a chance! This includes breathing support, surgery, whatever comes along. Becca has needed breathing support right from the get go and then on and off over the years but it has been so worth the extra effort! God Bless you! Oh, right he already has. You must be a very special family to be hand picked for Aaron!
Thank you for your prayers. And wow, 40!! That’s so amazing. Thank you for sharing with me. It helps so much to hear your words of encouragement. I will most definitely give my sweet boy a chance
Sending you hope and hugs from Austin. You are just what sweet baby Aaron needs, a mother who is a fighter for her children and filled with love and hope. May God bless you and your precious family.
Such sweet words for me. Thank you so much!