(If you are looking for my "Communicating through ASL" post, click here)
I know a lot has been written about cleft lip and palate by other adoptive mamas but for what it's worth, here is my 2 cents on cleft lip and palate as a "minor" special need ...
Her special need really wasn’t a “need”… in the beginning. At first, her cleft really was quite minor and utterly adorable. Sure, 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 in August 2011 though, 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 Sunshine'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 Sunshine 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.
Sunshine had a total of three surgeries her first year home and then will have several more after that in coming years. That includes 2 lip repairs (a simple lip adhesion, then a more complex one involving her nose) and a palate repair. 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. She'll also undergo a "real" nose surgery (that will include breaking bones, ugh) around age 16. 6 surgeries total, assuming that nothing goes wrong in the process to require more repair surgeries. And then there were the daily lip massages after the lip repairs and the seemingly never-ending dental work that hopefully will not require more surgeries.
There's also speech therapy, and she had months of therapy for physical delays. Because of her mouth's physical limitations, she is speech delayed. So we used American Sign Language almost exclusively for communication for about a year and a half. Although difficult at first, communicating through ASL was very effective and well worth the effort. She was significantly verbally speech delayed for quite awhile, but the 60 signs she used to communicate worked extremely well. I am happy to say that her verbal speech is starting to explode, thanks to her wonderful speech therapist and hours worth of work at home. ST started a few months after her palate repair to allow enough time to heal. Sunshine is such a hard worker and is so determined! Her articulation can be difficult to understand, especially out of context, but her improvement is very significant!
Although they are in the past and it's been is truly amazing to watch her transformation, 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 weakened immune system (due to so many surgeries) resulting in lots of sicknesses, the physical and emotional healing. All while taking care of our household and two other precious littles. 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.
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 for Sunshine is not “minor,” especially while also learning to attach and transition into our family.
Fortunately now, two years out, we've hit our "normal." The weekly speech therapy sessions are routine, and I am used to creating therapy moments out of every day conversation. There is still much more of a journey for our Sunshine, but the worst of it is certainly over. I am honored to walk alongside her through all of this, and love watching her grow!
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.
