Raising Awareness for Apert Syndrome
Tomorrow, this little man gets his casts off!! It’s been a long two weeks(1 day shy)! I can’t take how cute they seem though! But poor baby has been miserable, so here’s to healing and more functional hands and toesies!! 🥂
What’s it like being a momma of a child that requires a little extra attention than most babies, you ask?
Well, I’m going to get real with this post, from a moms stand point. This is me. This is my life. In a little story form you might say. If for any other reason than to bring awareness to “Other abled children” and what the whole family goes through. When you say how strong we are, it’s because we have to be, not because we feel it. We survive, and in the process try to find a way to LIVE while in survival mode.
I think for starters, when I had my first child, I thought I was sooo sleep deprived. HA!! Joke was on me.
This, THIS is sleep deprived.
Nights without end:
Of monitors beeping at me. (Some times accidentally)
Of oxygen cannulas coming out of his nose.
Of getting wrapped in his cords.
Of him crying because he’s hurting, and I don’t know where.
Of him waking up crying because he’s drenched in sweat, even though we try to keep him at a comfortable temperature.
Of having to pat him for endless hours, because he just needs a gentle touch to stay asleep.
Of acid reflux that burns his throat, and the meds don’t work all the time to prevent this.
Of him hitting himself in the face with his casts in is sleep, rudely waking him up.
Of worrying about if I’m doing everything I can to give him the best life possible.
These are part of what consists of a sleepless night.
This is why when you see me, you don’t see the old me, I’m at my wits end. I’m a mess. My house is generally a mess. The clothes are washed, but no energy to put away. The dishes are done, but once again, we just use them out of the dishwasher until forced to empty and refill. The pantry is full, but then I don’t have the emotional energy it takes to face a crowd to refill it... so we eat all the random item until forced to go shop.
I don’t do crowds personality wise, but I definitely can hardly take them now. All the loud noise, when my soul yearns for quiet. The babies crying and me dropping whatever I’m holding to make sure it’s okay (it’s real, I can’t hardly take a baby crying anymore. I have left a basket in the store before, because I couldn’t stand that the parents were just letting it scream). I can’t concentrate when there’s so many people around me, and all I can think about is, I NEED SLEEP.
This has all changed me as a mom. Some for the better, but not all. I’m evolving and just praying that when I come out on the other side, I come out on top!
I come out being able to say I did my best. It’s the little moments that keep me going.
PPA/PPD/PTSD are a real thing. And not very many NICU or special needs moms escape at least having some of this. This isn’t for a short time that we are facing this change in life, it’s for a lifetime. Does that mean our whole life is depressing?! Absolutely not! But it does mean that there are many obstacles to overcome daily. Learning how to overcome and be successful and on top of thing. And the good thing is, every day is is a new day for second chances! We never stop. We never give up. We never regret our plot twist. We continue striving on and always will. My best is all I’ve got, but I’ll be damned if I don’t give it 100%. It’s what real moms do. Moms that care. Moms that are in it until the end.
This isn’t a post that is counting my blessings, I have MANY, but it’s a post to hopefully bring a little bit of light to a sort of situation not many understand. If you’ve never been here, you can’t and that’s okay. But hopefully it lets you in a little bit when I give answers, and they seem vague. You ask me how I am doing, I lie and say fine, because it’s too exhausting to go into detail, and quite honestly sometimes the truth is too raw to tell. You ask if there is something you can do to help, I generally say no, because I honestly don’t know how to tell someone all the areas I truly could use help in. (Even to those in my home) You ask if you can come over, or if we can hang out, and while I honestly would love to, I don’t know how to take the time, because I’m already so far behind I’m everything. You call and I don’t answer, because I’m in a negative head space and I know that isn’t healthy for anyone. None of this is truly the “real” me, but it’s the me right now and I’m embracing it. Both the good and the bad. And I’m not alone. The moms I talk to that are in my shoes face the same story line, and while it’s authentic to each family, it’s still the same struggles internally. So when you talk to us moms, now maybe you will have a little better insight to how we truly are doing.
Keep reaching out. Keep offering a hand, a kind word, a prayer, a care package, a letter of encouragement. Because you never truly know, but it generally comes at JUST THE RIGHT TIME. A time when we need to know someone cares and is really there for us. This is as real as it gets. But its our truth, and we wouldn’t change it for anything in the world. We may have not chose this path, but it chose us, and I’ll forever be grateful for our little bundle of joy. No matter how hard the days may seem at times, it also has it’s rewards.
- Just a mom who’s learning to swim the currents of life.
Here’s an update, long overdue! A week ago today, Dawson woke up a new little boy. He doesn’t realize it yet, because he is casted; But he now has fingers and toes! The casts will come off next week.
Daws had the first stage of syndactyly release, and we will be doing the second stage in May. The first stage releases half of the digits. The reason for this is, when making the cuts and then grafting, there just isn’t enough room to work with if they were to try and do all of them at the same time. So they do half at a time! They make large cuts in the creases of his groin/legs to take the grafting skin from, and they then glue those shut for healing, thankfully those are doing well! We are pretty excited about the end result of all of this!
In the meantime, during the process of coming home and him beginning to heal this week, Dawson ended up having a few secondary complications which we just discovered what were. He has been in extreme discomfort and not able to soothe much,not sleeping well at night at all and refusing to eat near as much as he should be. Unfortunately, we now know, he has a UTI, an ear infection that is retaining fluid and then thrush. The poor baby got blasted with all the things at once! Thank goodness for an amazing pediatrician who stayed 2 hours after the clinic was closed trying to figure out what was going on! We are very blessed in the Doctor department!
All that being said, Daws has a few mountains ahead of him in life, but we will always fight our hardest to get him the best doctors possible and that will make sure he will have the most optimal outcomes possible! It still amazes me what all they can do to for our little Apert babies!
A huge thanks to my mom and Auntie Debbie for being there with us through the surgery and then after! Thanks to all of you who have reached out, brought over gifts, said prayers and made sure we knew we are not alone during this difficult time through surgeries. We feel the support and love!
