I was in Target several weeks ago. I had both boys with me, which rarely happens, and I ran into a friend who I haven’t seen in years. We met when I was pregnant with M and haven’t kept in touch. She since had another baby. I had another baby. I was filling her in on our summer and N’s diagnosis. I’m not sure why I told her as much information as I did, but apparently I was feeling pretty open. After catching up a bit, we both continued shopping.
I pulled my massive red Target cart (M likes to pretend it’s a fire truck) into the check out line and here comes Stephanie running up behind me.
“Kathy,” she said “The whole time I’ve been shopping I kept thinking Cri du chat Syndrome where have I heard that before? It just clicked with me that my neighbor’s daughter has Cri du chat and I think she’d be open to talking to you. She’s really sweet.”
So of course I wanted to talk with her. She lives less then a mile from us.
I knew of this family already because when we joined the 5p- Society (another name for N’s syndrome) they sent us a national directory of families who also have a child with CDS. I went straight to Texas and scanned the list for families that may be close to us. The same family that Stephanie told me about is on the list but I hadn’t contacted the mom yet. I wasn’t ready. After Stephanie told me it was her neighbor, and that she was really sweet, and essentially made the connection for me, it made the whole thing easier. It was God, in his grace, providing the connection rather than me making a cold call.
So this sweet woman has a daughter with CDS and she’s nine. She came over to my house with her son who is four just like M. The boys played super-heros for a couple hours while I listened to this woman’s amazing story of her daughter’s birth and the days, weeks, months, and years that followed.
Her daughter is very medically fragile and complex. However, she does not have the severe cognitive delays that many of these kids do. She is mainstreamed into the school system. She walks, talks, reads, writes, she goes to dance class, and swim class, and has friends at school. It’s really an amazing story. I felt hopeful. Not because I now expect that God is going to do the exact same things in N’s life but because this woman – who went from stranger to confidant in minutes – knows and understands some of the medical stuff we’re dealing with and has put a lot of work into giving her daughter opportunities. And you know what, it has paid off. There are fruits from her labors.
We shared our stories through tears and she said, “I’ll always be here. Right down the street.”
My big take-aways are:
Travel. Take N with us. Life goes on. Let him be a part of it though it may be hard and a lot more work than if he were your typical kiddo.
Learn new strategies for communication. We are already planning to teach N sign language if he is able to learn, but she told me about private sign language lessons and how that helped her daughter grow in leaps and bounds.
Believe that he is going to do far more than anyone could have imagined.
Look for God orchestrating things and people to care for you and your child. She kept telling me story after story of how God affirmed decisions or connected her to people she would otherwise never have known. She had many chilling tales of who she called angels that God placed in her path.
She just may be one of our angels. She is a child psychologist in Austin ISD and does evaluations for all of the incoming students with Autism. We’re not there yet but I’m already getting several insider tips from her about how to test N and fight for the full scope of services that he may need.
I’m not sure why I haven’t posted about this earlier? Perhaps I’m still processing the goodness of God, especially as He continues to provide us with information, supportive people, and encouragement in spite of the awfulness of it all. The variation among syndromes is incredible. That’s why no one can tell you what your child will and will not be able to do. And that’s why I can’t give up on him.
Here’s the two of us – me with my bloodshot eye and N with his thumb at the ready – recovering from being sick…again.
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!