It Gets Better…
I like to think of myself as a “seasoned” mom in the Cleft Community since my daughter is now 4 years old. I don’t know it all but I do feel like we have made it past some of our hardest times and there is light at the end of the tunnel. You see we are pass the 50 days in the NICU stage, taping her lip to bring the cleft closer, g-tube (having it put it, only to fall out a few times while she had it) ordering strips for her nose from Canada for $40 a pack only for them to pop after using them, the lip repair, weekly appointments to the dentist that specializes clefts to get the taping and piece to put in her mouth, the palate repair, ear tubes, pharyngeal flap surgery, arm-restraints or No-No’s, Craniofacial clinic…and a host of other appointments and evaluations.
And, we know next summer will consist of our daughter having cosmetic surgery and this probably isn’t the last surgery.
Let me be honest for a moment…it NEVER gets easy!!!
The process of knowing that your child was born with a cleft and realizing that these appointments and evaluations will follow her for a long time will never get easy. You will learn how to deal with the appointments, you will learn how to control your nerves (as in many times I am crying before or after appointments) but you do what you have to do. But seeing your child in pain before or after surgery, seeing them in the recovery room (crying your heart out THANKING GOD because there were no complications), crying because they are still out of it and you aren’t sure if they are in pain because they barely know that you are in the room…IT NEVER GETS EASY! Fighting back tears anytime the doctors even mention surgery…or fighting back tears talking about your child’s cleft…
Or simply the guilt that comes along with your child having a cleft…even though you know there is NOTHING that you could’ve done to change the situation!
It NEVER GETS EASY!!!!
BUT…there is light at the end of the Cleft Lip and Palate tunnel! I PROMISE!!!
As I sit and read many of the comments in the FB community groups, sometimes I respond and sometimes I don’t because I find myself needing to write a book and I don’t want to come off like I know everything…because like I said I don’t! We are 4 years in and I am still learning!
One thing I do know there is light at the end of the tunnel!
The first year or so is HARD (no sugar-coating it) its HARD! But as time goes on you will understand more of your voice, what to expect at different appointments, how to prepare for appointments, what time is a good time to take your child to their appointments and so on. Even down to when you will do surgery…
Its been a long road but now were in preschool and I have seen so many advances…and I cant help but be proud of her! We still have a long ways to go but we will continue to make sure that she has the necessary services she needs to get her to the level that she needs to be at. There was a time that I thought this “season” of her life was so far away, however, it got here so fast and now even though there are different things going on I know it wont be like this forever…
And not to get all preachy but God has brought us this far…I know He isn’t leaving us now!!!
So to all my parents of Cleft Kids…I would like to let you know that there is light at the end of the tunnel, it may not seem like it now, but know that it wont be like this forever! My suggestion is to join one of the Facebook groups for support or see if there is a way to find other parents in your area and you can be support for each other!
I’m sending hugs to all of you that feel like you are at the end of the rope and not sure how you are going to go on. We all have days like that, I still have days like that 4 years in. We all have different stories but are connected by our Cleft Children so while our journeys may not be the same or even similar…I am sending hugs to you all! I constantly remind myself of how far we have come (even if just from month to month), and I know that if I continue for my child that she will go far too!