Just Some Life Information

I figured I'd take some time and share some things about our life. I think for the most part it's all just becoming so normal to us, so I tend to forget how abnormal it actually kinda is....which is definitely a blessing. My thoughts will probably be a little random, but they are the kinds of things I have considered sharing off-and-on over the last several months, and tonight decided I might as well!

The similarities of a 4 month old and our 7 1/2 month old:
There was a sweet couple that sat in front of us at church this morning with an adorable baby girl. I took a minute to say hello to the family after the service and asked about their daughter. Her name was Vivien and she was 4 months old. Darin and I had sat and watched her interact with her mother during the service and all of her movements and behaviors were very similar to Tessa's. She was a little bigger than Tessa, but they looked and acted a lot the same. I felt bad, because I know I made it a little uncomfortable for them when they asked about Tessa and I had to tell them she was 7 1/2 months. It's funny though, because Tessa's hearing aids have become a form of self-explanation and we have learned to be thankful for that. I remember a mother of a grown son who had his own brain damage diagnosis as a toddler, said the best advice she could give us, would be to never compare Tessa to anyone around her...to celebrate her milestones and to celebrate the precious little angel God made her to be. I've told people on many occassions: it's not that I have expectations for Tessa's timeline....I just really want her to have a timeline and have progress in her own way and own timing! I think our observations of little Vivien today were more from a 'therapy' standpoint than a comparsion standpoint. We are learning so much about babies' development in general in our weekly physical therapy sessions, that we are more sensitive to the progression of babies and their early development in life. It is incredible to realize the things that our children learn to do so naturally...things we never even thought about with Parker.

One of our current physical therapy focuses:
This last Thursday, Miss Melody (our PT) wanted us to start working again with Tessa and her little hands. It has been difficult to work steadily with her because she has been so sick lately...so she has started making her tight fists again. Melody pointed out to us how sweaty her hands were and how when she tried to open them up flat they "blanched white". For a while, we were noticing Tessa, more and more, with her hands opened and relaxed laying flat, but she has started closing them up tight again and it's just something we are going to have to work on more with her. I rolled up some really long/skinny burp cloths and tied them in a loose knot. Then I slipped her little hand into them so that her fingers curl up around the rolled cloth and her thumb wraps down around it. Just one way we can help her learn to keep them open. A little therapy tidbit: if babies don't learn to open their hands, they have a very difficult time ever learning to sit up. This has been one of the first obvious signs of the spastic cerebral palsy that Tessa is dealing with. If babies can't flex their wrists and flatten their hands then they can't find the balance it takes to sit up on their own. So, we are working with Tessa's hands :)

Conversation with a man at the car place:
Saturday morning we had to take the Honda to the shop to get the brakes checked out. While we were all in the waiting area, a sweet older man asked about Tessa's hearing aids. Right now I can't remember exactly how he initiated the conversation, but he asked how she was doing with them and if everything was okay with her. It's funny, because I always tend to default to "well, actually she was recently diagnosed with severe brain damage, but she's doing good." What's funny about that is, Tessa's hearing loss doesn't have a darn thing to do with her brain damage, but it's just one of those things you wonder 'where do I start!' :) Do I say, "well, actually we found out 3 months ago that I got a virus while I was pregnant with her, that most of the population has already had by the age of 28, but since I hadn't had it and got it for the first time while I was pregnant, the virus ended up depositing calcium on Tessa's brain and not only does the virus attack the brain but it also attacks the eyes and ears." Yeah, I don't think that rolls off the tongue as well :) Maybe one of these days I'll learn a better response....working on it! But anyway, he really was a sweet man, he told me that she was just beautiful and if it hadn't of been for the hearing aids he wouldn't have noticed anything about her...that she was just perfect.

Isolation can be the worst part:
I am so appreciative when people ask. If there is anything I feel like I've said over and over again to the people closest in my life, it's that the isolation of our situation is probably the worst part of it all. There will always be people that will stare and there will always be people that will judge, but we love the times when we come across those people that choose to have a conversation with us about our daughter. I can imagine how intimidating it would be to broach a subject that you know nothing about. I was there, I was that person...I had never been exposed to the world of children with special needs.
My sisters were at a pumkin patch together with their kids several weeks ago and they were texting me that they had come across a family with 4 year old twin boys with what they believed to be a form of cerebral palsy. My sisters had some extra tickets for the train ride and thought it was so neat when they came across this family and were able to share the tickets with them. Both of the boys used walkers to get around and the train ride was really the only thing at the park that they were able to participate in. After they gave them the tickets, my sister texted me back and said she hoped they saw them again before they left the park, except she wasn't exactly sure what they would say to them. I texted her back and said "just say something!" :) We love to talk about our children just as much as anyone else wants to talk about theirs. We know you may not understand everything that we talk about, but the compassion that we feel, that you are willing to ask, is so precious. Parent's of special needs children are forced to learn the things that we never imagined learning. We totally acknowledge the information gap because we have spent that much time closing our own gaps in order to give our children the best chance in life possible. If your approach to a family with a child with special needs is one of compassion....I believe with all of my heart that there is NOTHING you could say that would be wrong. We understand that you don't understand. Our exhaustion throughout the learning process is our guarantee of that! Besides, the more you ask me, the more opportunities I'll have to fine-tune my response to inquiries about my own daughter ;) I would never wish what has happened to Tessa on anyone....but that does not mean that I don't rejoice in milestones met by all the other precious children in my life! Tessa's milestones will be different, her milestones will be slower...but her milestones WILL BE CELEBRATED! I know I have no right to try and speak on behalf of all parents' with children with special needs, but I believe speaking my heart with those that are closest to me and sharing our life with those that are interested, could lead to the initiation of conversations that might alleviate some of the isolation! That is why I share and that is why I want to encourage those of you that might wonder "what do I say"...just say something; just ask like the man did at the car shop..." I noticed her hearing aids and was just wondering how she was doing"...compassion is a gift.

~Whitney