when your preemie doesn't defy the odds
I have a dear friend, Becky, who I Skype with on a regular basis. Becky, as you'll soon learn, has a daughter very similar to our Pierce. She has been a tremendous blessing as we've navigated diagnoses, surgeries, therapy and everything related to preemies/brain bleeds/etc. So you can imagine what a gem this was when I found it in my inbox the other day! Becky, you really hit the nail on the head with this one. If you find yourself reading and you are one of the many whose children did not escape the lasting effects of prematurity, I think you'll find some comfort in this post. If you're still in the NICU, staring down a long, dark and unknown road, I hope this will give you hope that even the scariest of diagnoses can be conquered. Enjoy!
I was talking to a good friend today. We were talking about our micro preemies. Lindsay and I, were discussing how we read all the time about micro preemies who were born just as early as Pierce and Bella who have “defied” the odds. They have, in a large degree, “outgrown” the troubles associated with extreme premature birth.
First, let me say that my heart is happy for those children and their parents. But then questions start drifting through my mind. Did I not believe or pray enough? Did I not have sufficient faith? As we were talking Lindsay said she needed to write a post entitled “When your preemie doesn’t defy the odds.” I decided that was a great idea too and so here we are.
Our children, Bella and Pierce are very similar, both were born at the “cusp” of viability, both suffered massive brain bleeds, both have cerebral palsy, both are quite delayed in gross motor skills. In short, we are dealing with disabilities that time won’t cure completely. We think and ponder a lot about not only their physical development but their mental development as well.
So where does that leave those of us who were told our child may never walk or talk, and may have cerebral palsy...and then they do have all those things? Where does that leave those of us who held out hope and prayed our hearts out that our child would beat the odds only to find they didn’t?
I’ll tell you where it leaves me. It leaves me knowing that I wouldn’t trade Bella for the world. I wouldn’t trade the lessons I have learned from being her mother. I would tell the world that I still have hope. My hope is changing from her being able to defy the odds to Bella being able to lift, inspire, and show God's goodness. It leaves me knowing that through her I will be refined.
I am getting to the point of accepting that Bella will never be what the world deems “normal.” She is Bella, and God has a purpose for her. Do I have days that I wish she had been spared some of the trials she is facing? Do I sometimes wish that I was the parent writing the article about how their child beat the odds? Of course those thoughts run through my mind. We live in a society that compares and vies for that coveted “normal”.
But in talking with Lindsay, she reminded me that God gave me Bella so that He could work through her. Because of Bella my outlook about others has changed. I remember saying, “I’m admire parents who can do special needs kids, but I’m not one of those people.” I was scared of the word “disability” I was one who probably gave a pitying glance and a silent prayer of thanks that I had, until Bella, “normal” children. Now I am the one receiving those looks and it isn’t easy. I am the one trying to figure out how to take my 20 month old to the grocery store when she can’t sit in the cart. The one who still hasn’t figured out a way to bathe a child that has both spastic and floppy muscle tone. The one who dreads family outings because I have to back the entire house whether we are going for 4 days or for 4 hours. I am the one who if I think too much about the future and the “what if she can’ts,” starts to panic.
I am also the one who every night snuggles my micro preemie and thanks God that she got to stay. I am the one who lives for the smiles that Bella so willingly gives. I am the one who lives for the eternity knowing that one day Bella will be “normal’, not bound by a body that doesn’t work quite right. I am the one who has come to know and rely on the Savior in ways I didn’t know before. Even if someone had told me when she was born what the future would hold, I still wouldn’t have hesitated to save her! She IS worth it!!
So if you find that you are one whose child didn’t “defy the odds,” chin up! There is still hope! Rejoice in the small things. Cry when you need and find a good friend who is willing to listen. A friend who will remind you what your purpose is and ultimately who is in charge. You aren’t forgotten to the Lord. He knows how challenging our struggles are. He really will lift us up when we think we can’t go a step more.
Will I still feel that twinge in my heart when I read the stories of babies born like Bella who don’t have the challenges she does? Probably, I am human.
My heart and my head don’t always agree. My heart knows that Bella is just as God intended her to be. My head still wants her to be miraculously healed. It’s an ongoing battle but I think slowly and with time the peace and reconciliation of the two will come.
I guess I just want you to know that if your child does have some or all of those things the doctors told us could or would happen with these smallest of miracles, you are not alone.
Posted by lindsay
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Tears are rolling down my cheeks as I type...my youngest is not a micro preemie but he did suffer a brain bleed in utero and he does have cerebral palsy. I too struggle with his baths and struggle at the grocery store with a 20 month old who cannot sit in the cart...I also used to think I was not strong enough to have a child with Special Needs but God shows me each day that I am. Sweet Drew has given me a new appreciation for Heaven as I know there he will not be trapped in a body he cannot control. He is my angel and has taught me so much about life. Thank your friend for the beautiful post.ReplyDelete
Lindsey-do you still do ABM therapy with Pierce?
Nicole, Thanks for commenting. I love this blog post! And yes, we still do ABM therapy! If you want more info, email me :)Delete
WOW! What a touching article.... Every one of these children refine out lives. Thank you for touching my heart.ReplyDelete
I enjoyed reading this as it is one side that is not written about often.ReplyDelete
My micropreemie is home, but I still do not know what long-term cognitive effects will be. That said, I resonated with a lot of what you wrote. Especially the bit about "insufficient faith." It made me so so very uncomfortable when people tried to offer hope those early days by quoting verses about faith moving mountains. I mean, I believed that God in his goodness cared for my son and me. But I didn't know if that meant he'd live, much less that he'd live a full and "normal" life. And I didn't want this to be about "faith enough." I wanted it to be about God's grace, every day giving us one more day with our tiny son.ReplyDelete
I wrote a bit about how difficult the faith-like language (my pastor friend called them "spiritual incantations") were for me here: http://momofa23weeker.blogspot.com/2013/07/of-spiritual-support-on-cusp-between.html
It meant so much to me to have people who didn't try to tell me everything would be okay, but instead told me that no matter how everything was, they'd be there with me. THAT kind of friend made all the difference.
Maikata, Thanks for sharing your blog. I loved reading what you wrote... you articulate it so well! I will definitely be sharing your blog post at some point. So helpful for others to hear how to talk to folks in similar situations.Delete
Thank you thank you for this post. I was a 24 wkr and by God's grace somehow survived and without any severe problems despite that I should of died. I am 14 now. This really touched knowing what parents of preemies who did not defy the odds go through. My heart and prayers are with you and your friend who wrote this post and other preemie parents though I do not know you in person. God bless. RuthReplyDelete
Thank you for this post. My son was born at 24 weeks (he will be 3 this winter). He had brain bleeds, Hydrocephalus, severely delayed development, CP, severely visually impaired (you get the picture). You could have been writing about my sweet boy. Thank you for saying what is on my mind and my heart. It's ok if your child doesn't miraculously "catch up." They are perfect and exactly how God intended them to be. <3ReplyDelete