Cri Du Chat Syndrome - Titus the Warrior. Never Quit. Never Give Up. May 7, 2018 21:49
You will never walk.
You may never talk.
I AM Dissident.
Titus is a very active 6 year old boy, every day he walks to and from the school bus stop with his mom, he loves to play and laugh while he waits for the bus. He will most likely have a fish book or lighting McQueen tagging along to school along with his dory backpack. He absolutely loves to wrestle with me and loves when I squeeze him as tight as I can. He loves music and playing with his sister. He can’t go a day without watching bits and pieces of his favorite movie. You can always tell when his favorite moments are coming up because he gets super excited and starts to giggle and bounce around. If he could spend all day in a bath or pool he would.
On paper he seems like a very typical 6 year old but around the age of 1 Titus was diagnosed with a rare condition that affects roughly 1 in every 35,000 to 50,000 newborns called Cri Du Chat (5pminus). It’s a condition in which the 5th chromosome is either missing a piece or is deleted. Children with cri du chat will have a number of health difficulties that can result in multiple surgery’s and procedures through their life.
I could write a novel about the complexities of the syndrome but the easiest way to describe it is this: we’ve had to teach every muscle in Titus’ body what it’s supposed to do, from his tongue to his toes.
We will always remember the day Titus was diagnosed. The geneticist’s office called my wife at 11 in the morning, at her place of employment and said this: ‘Ma’am, your son has a condition called cri du chat. He will never talk and it is very unlikely that he will ever walk. He will never progress past the mental composite of a 6 year old. He will forever be severely disabled.’
That was a lot to hear, and a lot to process. But the amazing thing about it is even though everything felt like it changed for us that day, nothing changed for Titus! He had no idea what that doctor said or what the statistics were and he’s continued to push harder and farther than we ever imagined he could on a daily basis.
Describing most 5p minus kids can’t be summoned up easily. Relentless is an understatement when it comes to kids that have been diagnosed. For Titus when he was younger you could see it in his face when he saw other kids walking that he wanted to be a part of that. It was very apparent around the age of 2 that he desperately wanted to keep up with his friends but unfortunately wasn’t able to walk yet. So we got him a specialized walker that could help. To compensate for his small body and weak joints, Titus needed braces around his ankles to help stabilize and give him more support. At first the combination was difficult and awkward for Titus, he would stumble all over his legs. Best way to describe it would be trying to walk when your feet fall asleep. Yet slowly he got faster and better with his walker. It was unbelievable to watch, he was walking. And he KNEW he was walking! The smile on his face as we flew around the house or store or park was priceless.
The first time Titus walked independently was a few weeks before his 5th birthday party and to say we were excited is an understatement!! Shortly after that we got an email from the school asking if it would be ok if they sent his walker home for good because he wasn’t using it there anymore either. That day will forever be sketched in our memory as one of the happiest days of our life. Knowing that our son who we were told would likely never walk, was walking at the school without any assistance, walking independently and playing with his friends, meant more to us than words could ever express.
We ended up taking apart his walker and framing it in his room so the every day we could be reminded of his accomplishments and how far he has come from when he was a little baby. As a family we live by a quote that is hanging next to his old walker. “No magic potions... no fairy dust... no one to do it for you. Just one determined foot in front of the other.”
I’m not going to lie, Titus learning to walk without the support of his walker was a whole new thing and he fell, a lot. He still does. But every single time he falls he gets back up and usually yells ‘go go go!’ Such tenacity.
Six long years and a little over a thousand therapy sessions later, Titus is almost to the point where he has graduated from two different therapies completely, and is now taking half his sessions inside of the pool which just happens to be one of his favorite things of all time; to play in water.
Titus struggles with every day things, but when you say that to a cri du chat family their response is, who doesn’t? As parents of a 5p minus child there are always two sides of the parenting guide. You are either pushing them to do amazing new things that specialists said he would never do, or you are being a patient, loving parent that understands today just isn’t going to be a good day.
Most of the time it’s an even 50-50 with either one parent or the other for Titus. I am usually the one that pushes him the hardest. I will make him walk that extra step or use his utensils instead of his hands or not allow him to throw a fit when he is capable of telling us what he wants.
For me I get the most satisfaction watching him understand that he is capable of doing almost anything, but we both have our bad days. Just like any dad and son do. It can be extremely tiring having to carry your 6 year old whose legs are just too tired from walking that he is having a break down all the way to the car or through the store. But knowing that he gave every ounce of strength to get as far as he could is worth it.
His mother on the other hand can definitely tell when Titus is having a bad day, she is the work horse of the family. He goes to therapy four times a week on good or bad days, and when it’s a bad day imagine trying to wrestle a 6 year old who’s almost as tall as you are into the car. Being so close to him throughout the day she can definitely tell when he is about to have a complete breakdown. There are days when he loses it and being non verbal, he can’t tell us how he is feeling, whether he is hurting or if he wants a specific toy. Jackie always knows exactly what to do to make him feel better & bring him back to center. It’s a skill that all mothers of cri du chat families have to master. Jackie knows how to push him just enough to get him through the day.
For them, routine is everything. If anything changes even the slightest bit it can throw his whole day off completely. He won’t listen, struggles with typical things he normally could do without thinking, is easily startled and loses his temper. That’s when Mom is needed most. She knows how to relax him just enough so they can make it through checking out at the grocery store or leaving a therapy session when he wants to keep playing. She somehow does it gracefully and with a smile on her face. She may be a stay at home mom, but she definitely works just as hard if not harder than anyone I know.
For us, a day in the life of Titus is any typical day, there will always be good and bad days. He may walk like he’s drunk, he may need to be told 8-9 times to do something as simple as chewing his food, he may go through 10 different outfits due to accidents or messes. All of that is just our normal & it doesn’t even begin to compare to the amount of love that this kid shows us. The amount of strength he shows everyday when he is up against the wall.
We may have taught Titus how to use every part of his body but he’s taught us how to use every part of our hearts. He’s taught us how to be patient, how to be strong, how to persevere through the good and the bad, and most importantly how to love unconditionally, with no expectations and no strings attached, just an enthusiastic outlook on whatever surprises are to come!
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