Cleft lip and palate as a "minor" special need

March 1, 2012 cl/cp, Nicole 6 Comments

Her special need really wasn’t a “need”… in the beginning. Her cleft was quite minor and utterly adorable. Eating was terribly messy, and we had a lot of nonstop drool. And, I suppose when we were out in public, her cleft lip became more obvious and apparent as people stared. But I truly did not see her cleft. I loved her sweet face the way God made it, and her smile was absolutely contagious.

As her first surgery approached last August, I began to mourn the loss of her big clefty smile. My heart hurt for the pain my daughter was going to be forced to endure.

When we first accepted Brooklyn’s referral, the thought of surgeries didn’t really *hit* me. I knew she would have to go through them but I didn’t really *know* it. The thought of surgery was put on the back burner in the midst of all the paperwork and travel planning. But once Brooklyn was a physical part of our family, the reality of the process and multiple surgeries set in. And, I felt terrible. Sure, I knew the surgeries needed to be done but emotionally… wow, that was a different story. Emotionally, I was a wreck. I got that heavy feeling in the pit of my stomach whenever I thought about the surgeries. Well-intentioned friends said kind and supportive words, but they just didn’t understand.

Intentionally putting my child through painful surgeries to “fix” the way she looks does not make me feel like a good mom. I know we “signed up for it,” so to speak, but the reality of it is just not easy. Does it have to happen? Yes. Is it the right thing to do? Yes. But does it make me feel like crying? Um, quadruple yes.

Brooklyn will have three surgeries her first year home and then several more after that in coming years. There will also be speech therapy after the palate repair, and she has already had months of therapy for physical delays. Brooklyn has had 2 lip repairs (a simple one, then a more complex one involving her nose) and has a palate repair coming. She’ll need a nose revision after 5 years old and eventually a bone graft at age 9 or 10 to fix her gum line (doesn’t that sound like fun?). 5 surgeries total, assuming that nothing goes wrong in the process to require more repair surgeries. And then there’s the daily lip massages and the seemingly never-ending dental work that hopefully will not require more surgeries. I was somewhat naive about her surgeries. I knew there would be several, but I didn’t actually know what it would be like to go through surgeries with my child . . . the surgery itself, the weeks of recovery with little sleep, the physical and emotional healing. And truthfully, I didn’t know what I didn’t know about the surgeries until the first one was drawing near. I should have asked more parents about their experiences. I wish I had asked more about what it was like to support a child through the surgeries, the therapies.

By no means would I do things differently if I had it to do again. I am so thankful that we are able to love our daughter through this process; if given the chance, I would adopt another cleft kiddo in a heartbeat. In. a. heartbeat. There is something amazingly special about cleft children, and I haven’t met one that I haven’t been instantly in love with.

But, cleft lip and palate as the “minor” special need we set out thinking it was? Maybe the surgeries, speech therapy, etc. do not sound that bad “on paper” (they didn’t to me), but I can assure you that going through it is not “minor.”

Going through these surgeries, recoveries, and therapies with Brooklyn, especially while caring for 2 other young kids, has been difficult. Since we brought her home in June, it seems she has either been transitioning, going through physical therapy, having a surgery, recovering from a surgery, or getting over being sick. And we haven’t started speech therapy yet. All while learning to attach to us and transitioning into our family.

Although there have been a few weeks here and there that have been blissfully uneventful, most of the time, we are working through something. She has spent a good portion of non-surgery times sick. She just doesn’t have the antibodies the rest of the family does and going under general anesthesia so many times has taken its toll on her lungs, making her more susceptible to sickness.

I am so glad the next surgery is now 5 months away. That will give our family time to be “normal” and just enjoy each other. Because despite all that Brooklyn’s been through, she still wakes up with a gorgeous smile every day and is such a sunshiney joy to be around. I am excited to give her a break and be with her just as herself, not when she’s not going through the craziness.

Considering cleft lip and palate for your special needs checklist? Waiting to bring home your beautiful cleft child? Don’t hesitate to get in touch with me or another cleft parent. Because it’s often considered a minor special need, it is easy to think you don’t need a lot of support or help in emotionally preparing yourself for the road ahead. Minor or major, multiple surgeries is a difficult thing to go through, no matter how you look at it.

6 responses to “Cleft lip and palate as a "minor" special need”

  1. Stefanie says:

    LOVE this post, Nicole… it’s such a candid look at what happens after your little one comes home with cleft lip and palate. And, man oh man, is she ADORABLE! Before and after!

  2. lauren sanders says:

    Nicole, this is beautifully written and very honest. We are awaiting an LOA for our little one with cleft lip/palate. I appreciate your writing. It has helped me prepare.

  3. Awww, Nicole!. She’s so, so pretty. What a doll. Thanks for sharing your story and for encouraging moms to reach out. We all need it, no matter the need we’re facing. Great post!

  4. Leslie says:

    Very informative and so TRUE. Cl/cp is NOT minor and surgery with little (or big) ones is just not good. Even when necessary.

    BTW, for anyone reading, our DD has had 6 surgeries for her cl/cp needs. DS has had 3 and 1 more scheduled and they are not even close to being done with surgeries. We had NO CLUE when we brought home DD1 what cl/cp really involved. I realize not responsible but we thought we knew … when we went back for DS4 we did know, though he came home with deafness which can be with cl/cp.

    Just my random thoughts; this is a great post Nicole. And she is adorable too!

  5. Julie Boyd says:

    Hi Nicole,

    I love your post!! We will be bringing home our Ruthie Grace home from China hopefully in August. She is a cl/cp baby girl and this post really helped out so very much!!

    God Bless You and Yours!!

    Julie Boyd

  6. Amy Thompson says:

    Hi Nicole,

    My oldest son was born with a cleft lip and palate. It came as a complete surprise. I understand what you mean about the agony of that first surgery. You know that they need it, but you do miss the face that you have grown to love. Andrew is now 10 and has about 7 surgeries for his cleft. He has been amazing through them all. We have a few more ahead of us. Thank you for being willing to adopt a cleft child. Because of Andrew, I wish that I could adopt them all.

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2017 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.