I haven't written for a while, not because things have slowed down and there wasn't anything to write about or that we haven't been learning sign language... but because in a nut shell, things are just damn hard sometimes.
I don't think that Rob and I could have anticipated the strain Calvin's hearing loss would put on our marriage, or our family. My older kids have really struggled lately, and I am sure it has more to do with the lack of attention they're getting than anything. In addition to being profoundly deaf, Calvin has a blood disorder.. or two. We're not entirely sure what's going on yet, but the short version is that he has too few white blood cells (Neutropenia) and WAY too many platelets (thrombocytosis). This means that until it's resolved, it's very easy for him to get sick. Which means that at a minimum, I have 3-4 doctor appointments a week for him between his pediatrician, his infectious disease doctor, and the hematologist that we will now be seeing. Most days... I am at a complete loss to try to manage it all on top of the house, a job and three other busy kids.
To help us navigate our way through the deaf culture here in Boise, we've joined a couple groups. One of them is called Hands and Voices. They provide a lot of support for whatever communication methods your family uses. Because we have chosen American Sign Language, we were invited to a practice session the other night. I had been working all day and frantically tried to wrap a project up so that I could get there on time, and like always, I was running late. I was tired, Rob was tired, we had both been working like crazy and both still had tender feelings from a pretty rough weekend. I was so close to cancelling and not going. Knowing what I know now, I will never, ever regret going.
The class was held at a McDonald's in Nampa, which was a little different, but easy enough to get to. When we walked in, we were so late that there was only the instructor, the interpreter and one other family there. A single mom named Misty, and her little boy named Lake. After introductions were made, everyone asked about Calvin. How old he was, how much hearing did he have, how much sign language did we know... etc. After we gave Calvin's story, it was Misty's turn, and I was completely and totally changed by what she had to say.
Her beautiful red headed, brown eyed little boy was almost 2, but still not able to sit up or hold his head up. He had no muscle tone, and was eating through a feeding tube in his nose. Every time he sneezed, he lost almost all that he ate and had to start over. When Lake was born, he had a hole in his heart and during open heart surgery, the life support machine failed. After 5 strokes he was left partially paralyzed, with cerebral palsy and profound hearing loss. He will never walk, talk, or hear, and he may not even be able to eat on his own due to his tongue being paralyzed from the strokes.
The most amazing part of Lake's story was how cheerful and happy his mother was. I know from my own experience that it is so easy to detach yourself and tell your story to strangers and appear cool, collected and happy... for about 5 minutes. I am certain that she has her bad days too, but this was not one of them. As the class progressed, she was teaching us a lot of sign language, all while cradling a healthy sized 2 year old in her arms. She was smart and funny, and her good humor made me ashamed of ever feeling sorry for myself. Then she said, "it's so good to see that you are both here. A lot of times, it's just one parent that comes. Lake doesn't have a dad, so it's just me doing this and you're lucky to have each other." Right at that moment, I felt like such a fool for every argument that Rob and I have had since Calvin's diagnosis.
She left to grab a coffee and handed Lake off to our interpreter. While she was gone, I expressed my admiration for her and all that she goes through. Our interpreter simply said, "She's had a lot of grieving to do." I tried to imagine what it would be like, to hand your baby over to a Doctor who was supposed to make him whole again and then find out that his life had become infinitely harder. I could only imagine a small part of the enormous pain she must have been through. Then the fact that she has to endure this alone hit me and I started to cry.
I have no one to be angry at for Calvin's deafness. It's no one's fault. There isn't a machine or Doctor that failed him. Rob and I knew that his hearing loss could mean that there was a higher risk of having a baby with hearing loss, but we are still left with no one to blame, sue or yell at. Here was this mother who had every reason in the world to be hateful and bitter, and instead, she was so sweet and supporting us.
When we were getting ready to leave, I asked her if I could give her my number and offered to help in any way that I could. I don't know what prompted me to do it, and it sounded really weak and lame. How can I help her when I am at a total loss to manage everything already? She was so gracious and I think she understood what I was too embarrassed to say out loud. She said, "Maybe we can get the boys together someday. Lake loves babies, and it's hard to invite other kids over. It's hard to see him around kids who can do everything."
That's what I was offering her. A chance to be around another kid who can't do everything either. Calvin stands a better chance of doing more than Lake can, but at this stage, developmentally, they are on equal ground and Calvin made Lake smile the most beautiful smile I've ever seen.
I thought I had gone entirely through the grieving process, and apparently... I hadn't. I had no way of anticipating exactly how difficult it would be to navigate my way through this. For as much as I want to be OK every single day, I realize now that it's unrealistic to put that expectation on myself. There are just times when I need to cry. After Misty and Lake left, I went to the bathroom and cried. I cried for her, for her son, for my son, my husband, and for all the families I know who have to go through profoundly difficult challenges, hearing related or not.
As we were driving away, Rob and I were amazed by what we had just experienced. We don't have the worst case out there, and we have each other. It's hard, we're tired, ill-equipped, and sometimes we take our frustrations out on each other, but we're managing. We have love, we have support, and at every turn I've found something to inspire me to be better than I was before. I hope Misty does call me. The world needs more parents like her and I think that even though I have four kids and my oldest is a teenager, I have a lot to learn from her.
