As I write this today, one of my dearest friends is in labor with her first child. I am thinking about one of my favorite quotes: Birth is just the first of countless times we will confront the fear of the unknown for the love of the child (Peggy O’Mara). Over the past year, I have realized how many times I have had to confront the fear of the unknown. Sometimes daily, it seems. This is what being a mother means to me – my ability to keep mothering Finn in spite of the fears, in spite of the uncertainties, in spite of the hardships.
It was a year ago this month he had his surgery. I had hoped and prayed at this time last year that by now he would be walking and talking, that he would be close to catching up with his peers. Sadly, that is not the case. He is still very much behind, especially in terms of his physical abilities. He is still unable to stand independently for more than several seconds. Often is it hard to see how he will ever walk when this is still so difficult for him. It is not for lack of trying! He frequently attempts to stand, but it is hard for him to find his sense of balance. The low muscle tone and ataxia persist.
Nevertheless, he has made some progress in the last few months as well. Despite his challenges with standing, he loves to climb! In fact, he tries to climb on just about anything – the couch, stools, his toys, boxes, etc. and even our cooler. He also likes to try to kick balls. Yes, this is true. He can’t stand but he wants to kick. He’ll even try to kick a ball while crawling around the floor. This is not an easy task! He has to be strapped in to shopping carts each and every time now – otherwise he tries to stand up in them.
In the last two weeks Finn got orthotics (AFOs) for his feet. These are plastic, contoured things that have Velcro across the top. They fit around Finn’s feet and ankles, and then his shoes go on over them. His therapists were optimistic that they would help him stand better, but unfortunately we haven’t really seen these improvements. Next week he is going to get fitted again and possibly get a pair that are a bit taller, offering him more support. It has been difficult for us, as we were hoping he wouldn’t ever need these. Now, it has been even more discouraging since they haven’t worked quite as well as we all hoped.
On a more positive note, over the past month one of Finn’s huge accomplishments has been his new found ability to drink from a straw. We had been working on this for many, many months so we are so happy for him. We have a bunch of hard plastic cups with lids and straws that both him and his older sister are very much enjoying using. He still bites down on the straw after a while, but at least now he can does now how to suck when he wants to. I think he is quite proud of himself and so are we.
In terms of language, Finn has added some approximations of animal sounds to his repertoire. He makes an excellent “caw caw” for crows and he says a high-pitched “mao” for cats. He also attempts to say “neigh” and “moo.” And his dinosaur roar is fabulous. We spend a lot of time talking about animals, and all kinds of vehicles of course. When we are out and about he is always on the lookout for buses, big trucks, and fire engines. He is certainly a typical boy in that regard!
Lastly, we have been enjoying lots of fun summer activities. We had a wonderful camping trip in June. Finn loved playing at the campsite and he did pretty well sleeping in the tent, even though it took him a while to fall asleep since he was so excited. We have also been picking lots of summer berries. Just like his sister, Finn LOVES berries. He has even gotten the hang of eating some and then putting others in the basket for later. Very cute!
Finn and I will be starting a cooperative preschool next month. It will just be one day a week for two hours. I am hoping he will enjoy the socialization and that it will work out for us. Thank you all for your continued prayers and support. We often feel very alone in this journey; we appreciate the love we receive from others.
There are new pictures up in the gallery as well. And we are attempting to update the entire site. So look for some changes!
