As a mom it can sometimes be difficult to watch your cleft kiddo realize that he is different. Entering the second grade his friends, classmates and teammates are all sporting toothless grins reminiscent of a jack o’lantern and yet, he is not. At this point he realizes that he is not going to meet this typical milestone. I can’t help but feel a pang in my own heart as I, too, will not get to be a witness sharing in the photos other moms are taking and posting on FB, Instagram, etc.

This is not the first milestone that we have missed having because being a mom to a cleft kiddo means that we have a different experience that is not your “typical” one. Being a cleft kiddo mom means that sometimes we don’t get to experience breastfeeding our little one in the middle of the night and though you might be reading this and thinking that’s not such a big deal because those nightly feedings can be a real pain, it’s still something that I did not get to choose to do. The choice was made for me and since I did breastfeed my first child I did in fact know what I was giving up, or rather, missing out on. Holding my baby in the middle of the night and rocking him to sleep while breastfeeding were visions I only dreamed of and not our reality. This was a grief only I had and only another mom who is not able to feed their crying child could understand.

We did not celebrate 3 month old photos with our cleft kiddo because we were busy preparing ourselves for his first surgery. Our milestone was that he had his lip repair surgery, ear tube surgery and made it through anesthesia.

Our son was not able to babble out  “dada” or “mama” as a typical child would and as parents that was a big one that we had to go without for awhile. Eventually the words came but not as soon as they would have had he been born without the bilateral cleft lip and palate. We used sign language to assist him with his frustrations with communication and he learned “mama” and “dada” that way first.  We have had to learn to shift our expectations for his “typical” milestones and celebrate in the moments we do get that we have achieved after a great deal of hard work and continued efforts.  Repetition is key where speech and language are concerned and getting to hear him speak as well as he does now has not been without its challenges.

Blowing bubbles was another childhood milestone that was not immediately met by our cleft kiddo. You or I do not even think twice about being able to blow bubbles. It was not until my son started crying out of frustration at not being able to do what other kids were doing around him that I understood just how difficult it really is to do something as simple as blowing bubbles. We worked with his speech therapist and at home to get him to that very important milestone and the elation we all felt when he first got it was a moment I’ll never forget. He doesn’t remember this, but I sure do.

As our little guy gets older and sees for himself the milestones he is not meeting like that of his peers we share a grief not known to others. Our norm and our milestones are different and that’s okay. He came home pretty excited to share that he has one upper sort of front tooth loose. He will not lose his two upper teeth like “normal” but just having that loose tooth is exciting for him and he can’t wait until it actually falls out so he, too, can share his tooth fairy story.

His smile will not be that of a jack o’lantern this year and that twinge of pain I get in my heart is not as strong as it used to be. It’s there sure, but we have learned that our milestones are different and we don’t yet know the exact differences yet because we are still going through it. Navigating through the unknown is something we as a family are doing together and it is exciting. Instead of being the mom that has gone through it all before and is comparing this kiddo’s experiences to his older sibling, I am looking forward to what I don’t know is coming and expecting the unexpected. This crazy life of ours is chaotic and colorful. His million dollar smile not only cost us that much, (:) )but makes us feel like a million bucks every time he flashes it. Embracing his unique smile and looking forward to that one lost upper tooth is our new normal. We will have our photos and our special moment. It won’t be like that of our friends and peers but it will be ours and it will be celebrated.

Celebrate your unique milestones with your cleft kiddo and embrace the little things that add up to the really big things that are yet to come. 🙂

Some helpful resources regarding dental care for the cleft kiddo are:

Dental Care for Cleft Kids