There have been moments in the last year when I feel as though I’ve won the lottery with this child. He has tilted my perspective toward spiritual, lasting things and has made me abundantly rich in that sense. Some days I feel like I can honestly say, “My cup overflows.”
Other days I feel I’ve been given a prison sentence. I feel chained to this sweet child for the rest of my life and a dark cloud of complex and endless problems seems to have permanently camped out over our home.
Those are the two extremes I swing between on a regular basis. That’s the honest truth. Last weekend at the annual Cri du Chat conference I discovered that these feelings are common for many of the families dealing with the same syndrome as we are with N. It never really gets better or easier. You don’t suddenly just get over genetics. Instead, you learn how to deal with it and you love your child in spite of it.
On Friday afternoon after M’s preschool camp, we headed down to San Antonio. It’s almost a two hour drive from our home but traffic and potty breaks and dinnertime slowed us down. my husband was following us after work and so it was also hard to not have him with us.
We arrived at the hotel when many of the other CDC families were coming back from a Morgan’s Wonderland outing. Never have I seen so many special needs kids in one location all at the same time. There was also another conference going on along with two weddings. The hotel was crawling with people. I do not have any diagnosed sensory processing issues – other than my husband knows I do not want to be touched while I’m eating – but I was incredibly overwhelmed by it all.
I did a lot of observing these kids and a little talking to their mommas. There was no, “Hi, how are you? Nice weather we’re having today.” It was more, “Hi, is he on a feeding tube?” “Mine too. I would suggest you push the therapist to offer him food for taste sooner than later because he needs to practice. Everyone else is going think he’s drowning and can’t recover, but you know your child.”
And I knew exactly what she was saying.
I was so awestruck by the varying degree of complications these kids have. The range goes from kids who are walking, talking, and some are even reading, to still on feeding tubes, trachs, in wheelchairs and barely able to hold up their heads. It’s a huge range. There’s no way of predicting where N will fall on that spectrum.
Although these kids widely vary in their functionality, there are big similarities in their physical features. At the banquet on Saturday night it was as if we were at a great big family reunion for these kids. A gathering of long lost brothers and sisters. No matter the racial differences, they all looked exactly the same. And they all sounded the same. I would hear a cry or whimper and turn my head expecting it to be N, when it was actually someone else’s child. We joined a new family.
These are the big take-aways for me…
You figure it out. Whatever it is – feeding tube, wheelchair, behavior issues, financial aid, advocating within the school system. There really is no other option so whining and complaining about how hard it is, is not all that productive. Crying. Well, I happen to actually believe that crying is very critical to the grieving and healing process. So I do that fairly regularly. But afterward I need to head forth into reality like a big girl and figure it out.
It’s exhausting. Everyone looked somewhat tired and aged. Perhaps I’m just projecting my feelings and experience from the past year onto other parents, but really why would we not all be utterly exhausted? It’s not like I just had a newborn and need push through for six months until it gets better. There’s no end in sight. The big lesson here was I need to figure out how to better use our respite time without feeling guilty. This was repeatedly emphasized by other parents. Enjoy the chaos. I must learn how to enjoy – and if not enjoy, then accept – the chaos of it all, rather than fight to change it. All of our kids were in the same room at the close of the conference. It was non-stop moving and noise and people invading each other’s personal space. Earlier I said that I don’t have any sensory processing issues but by the end of the conference I was seriously beginning to wonder. One child cozied up under my arm as if she were my child and started going through N’s diaper bag. It was very sweet and funny in a way but it also made me completely uncomfortable. I had to take a deep breath, deal with my own personal space issues, and think through would I be okay with this if it were N? Parenting plays a part. I felt very convicted in my parenting philosophy in general. I am by no means the face of a parenting expert. However, my husband and I realized watching another set of parents that their strategy likely wouldn’t work with a typical developing child, so why would it work on a special needs child? In contrast, I saw a mom interact with her CDC child almost the same as her typical developing child. Though, the CDC kid took a lot more of her energy, pushed her far more than she would probably like, and required some exceptional distracting tactics, he knew where the line was and he knew she wouldn’t let him cross it. You could see it in the way they exchanged glances.
Communication is key. It’s easy to read about these CDC kids and say generally they are incredibly sociable, but hyperactive and impulsive. I think that’s probably true. Take an even closer look and you can see that many of their behaviors and frustrations stem from their inability to communicate. So as parents we need to work hard at finding a way to communicate, even if it’s through sign language or an iPad. Hopefully we’ll be better off than not trying at all.
Siblings of special needs kids are amazing. God has graciously provided me with three friends who have special needs siblings. They are some of the most remarkable people I’ve met. They have admirable character traits developed deeply within them through the experience of having a special needs sister or brother. This theme was only enforced last weekend. One of the siblings who was a tween and helping out in the childcare area, reached out to M at the conference. She put him at ease and my husband and I as well. Overall, M probably did the best of all of us last weekend. Occasionally I would catch him looking wide eyed at someone for their strange behavior. But I also saw him confidently go up to a child in a wheelchair and ask what his stuffed animal’s name was. He amazes me. He’s at a magical age of innocence and acceptance. He was thrilled to be able to dress up as various super heroes all weekend long at the “Super Hero Cri du Chat Conference.”
Cling to God or else. I don’t know how I would navigate the world of Cri du Chat syndrome without the Lord. I could speculate but wouldn’t be pretty. I have been learning again and again to live day-by-day and look to Him for provision in how to care for this child. If I forget, He teaches me all over again.
I’m glad we pushed through our fears and hesitations and decided to attend. I wish the conference was held close to our home every year. We gathered a ton of information but it wasn’t enough. We met many different families but wanted to meet more. The sustaining factor is in knowing some of the families face-to-face. These are truly some of the most sociable, loving kids I’ve ever met. I got lots of hugs from people I’ve never met. Now when I see them on facebook, I know them a little more.
These two ladies are in their twenties and are beautiful souls. Their parents are society board members and I would argue they have taken on huge roles of representation within the organization as well. I love that they are both wearing the same “in” shoes kids are wearing these days.
This dear friend lives less than a mile down the street from me. She has an amazing daughter and is an inspiration. This is the family that I mentioned a long time ago in this post. We have most definitely earned those crowns by the way.
This is the little guy who ushers us into the unknown day-by-day. Notice his super hero cape. It was a birthday present from his grandparents in Illinois. He did well with basically no naps all weekend long. He’s my little super hero for sure.
It was a good conference and a hard conference. Very similar to how I feel I’ve won the lottery and am tied to my child all at once. Once again I find myself living in the extremes and trying to reconcile the both/and of this life.
I now know this. When you read about the syndrome you are reading about the diagnosis. When you meet individuals who have the syndrome, you are meeting incredibly special people. So, instead of obsessing about the diagnosis and what it means for our family, I can love my child and live day-by-day into how the diagnosis plays out in N’s life. N has Cri du chat Syndrome, but he’s still N. And I think he’s pretty special.
“They will have no fear of bad news; their hearts are steadfast, trusting in the Lord. Their hearts are secure, they will have no fear; in the end they will look with triumph on their foes.” – Psalm 112:7
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!