Thursday, September 19, 2013

Should I have prayed to deliver a child with special needs?

I think I make it no secret that when Ella was born with Cornelia de Lange Syndrome I was pretty devastated. Okay, completely devastated. There was an indescribable loss of so many hopes and dreams and plans for our future. I mourned the girl who I thought she was, that she would never be. I grieved the daughter I would never have, the sister my boys would never know, and the 'normal' life I thought we were entitled to. I knew there would be many unknowns in our future. I knew a lot of sacrifices were sure to accompany them. And I knew our lives had just changed forever.

I've always wanted a big family. Always dreamed of having at least four kids. A household full of laughter and love, bustling with energy, imperfectly knit together in a beautiful quilt called family. With two young boys and baby #3 on the way our lives were a wonderful mix of chaos and contentedness. And then Ella was born. And we learned about CdLS. And along with so many dreams I had for my daughter that were being ripped away one by one, I wondered if I was going to have to give up one more of my own biggest dreams as well.. my dream of having another child. At the beginning of our journey with Ella we didn't know what her syndrome was, just that 'something might be going on.' And we had so many fears, so many questions. "How did this happen? What caused it? Was it genetic? Passed on from one of us? If we have another child is there a chance they'll have it too? What would Ella's behavior and needs be? Would we be able to emotionally/financially handle another child?" And after Ella spent 2 whole months of her first year of life in the hospital, my fears did nothing but increase. "Will she be medically fragile her whole life? Will we be continually in and out of hospitals, specialists, and therapies? How could I possibly care for her in the hospital with an infant tagging along? Would it even be fair to bring another child into a family where so much care was being devoted to one particular family member?" 

As the months went by and Ella grew it became obvious to me that yes, she was developmentally delayed and had some special needs. Of course for any family in this situation the decision to have another child is highly personal, but for me giving up having more children just because of the minor inconvenience of a rare genetic syndrome in our lives just wasn't something I was very willing to do. Call it stubbornness, call it persistence, call it pure shades-over-my-eyes naivety.. We decided to move along with our plans to grow our family (but not until I was sure Ella was very very close to walking.. I may be crazy, but I'm not that crazy..) 

But even though I knew I wanted more kids, even though I had grown so much in my acceptance of the role of CdLS in our lives, even though I knew I would love another baby no. matter. what. I still had fears. Fears I don't even want to admit. Fears I hate talking about. Fears that something else was going to go 'wrong.' I knew that since CdLS is generally caused by a spontaneous new genetic change our chances of having another child with the syndrome were slim, but still I was worried. More worried than I'd like to admit. 

"What if we have another child with CdLS?" 

I hate that I even had that fear. I mean.. I'm the one who wrote the "Healthy Baby" post. I'm the one who writes ranting blogs about accepting people for the perfect way God made them. I'm the one advocating that Ella is just like any other little girl her age and deserves the same treatment. I'm the one who loves my daughter to the moon and back and wouldn't change a thing about her. And yet.. I'm the one who was worried that I was going to have another baby like her. I tried to pray about it, but what was I supposed to pray for? That we wouldn't have another child with CdLS? That would be a slap in the face to our precious Ella who was created perfectly just the way she is and in direct opposition to everything I've written about the blessing she is to us. What else could I pray? That we would have another child with CdLS? That really wasn't what I wanted either though. Was it okay to admit that?

My fears were part of the reason I held my breath a little at every ultrasound and waited anxiously every time we tried to find the heartbeat. It was why when immediately after Hudson was born and JJ was standing right in the way of me being able to see him, I didn't ask him to move. I was afraid. Afraid of what I would see. Afraid of what the doctor was going to tell me. I laid there on the operating table, my breathing shallow and my pulse quickening while the nurses cleaned him up and checked him over, and I waited. Waited for them to break the news. To tell me what was wrong. Waited for them to call in the specialists. Waited for the devastating news to be delivered so I could officially move on with my grief and shock. It never came.

I can't explain it really.. Why would I still be worried about such a thing after everything I know now? When I know what a blessing Ella is to our lives. When I know all the ways she's changed us for the better and the joy she brings to us every day. When I know and am so thankful for all the amazing people she's brought into our lives. I'm sure it has something to do with our human nature to want things easy-for ourselves and our children. Of course no one wants to see their child in pain, to watch them suffer, and unfortunately there is often much pain and suffering that goes along with CdLS and special needs in general. From the surgeries to the extensive therapies to the unfortunate pain of rejection from peers. My entire pregnancy, I wasn't quite sure how to pray for our unborn child. I mean.. was it okay to pray for their development? To pray they didn't have CdLS? Or should I be praying for a child with CdLS since I'm the one who writes about the blessings that come from it? Shouldn't I want another one?? I knew I would love our child just the way he was made, but I felt so guilty for not necessarily 'wanting' another child with special needs, for being worried, for feeling the urge to pray for the health of our baby. I felt like I couldn't do it. Couldn't pray for the health of our baby, yet at the same time couldn't not pray for it. I felt like by doing so and allowing myself to hope there was nothing 'wrong' with this baby, I was turning my back on Ella, subliminally saying to her "I don't want another child like you." I couldn't do that.

And then I read somewhere that nobody prays to deliver a child with special needs. Just as nobody prays to die, so that they can be brought back to life with a bolt to the heart. Because that is exactly what happens when you have a child with special needs. A piece of you dies, but your heart is reborn. 

So no, I wasn't necessarily praying to deliver another child with special needs. And that's okay. Because ultimately I knew I loved our child.. all of our children.. no matter what. And that's truly all that matters. 


  1. So many times my prayer is to be accepting of whatever God will give me.

  2. Thank you for sharing these thoughts.

  3. Thank you for putting into words EXACTLY how I have felt about adding to our family after my son's diagnoses. My son doesn't have CdLS but your thoughts & feelings are very similar to my own.