Friday, September 23, 2011

What to write?

I admit I am not a blogger. I am not into journaling and I tend to be private. Not to mention life is so busy...But I have been asked to update so I will. How much do I share? Do I "bare all?" Do I just gloss over our life and paint the rosy picture? There are people who read this that I would prefer just think everything is perfect. That there is no stress, that I can handle it all. I don't want people to know I struggle. Truthfully the picture is truly quite rosy. Ember is a joy and she is so loved by everyone. She fits in so well and just is blossoming nicely. What a huge personality in a small, mighty package!
We returned to Philly not too long ago and had her cast removed. She was fitted for an AFO brace to help her foot not regress. She was also casted on her left foot so they can make her a prosthetic. We are supposed to return in a couple more weeks for an initial fitting, then again for a final fit at which time we meet with both surgeons for her arms and legs. The next treatment plan will then be discussed. For now, here at home I am still trying to get her into therapy at a local rehab hospital. It is slow going. We also got a 2nd opinion on her at that same hospital so we could compare treatment plans both locally and in Philly.

Here is where I start worrying. What is best for her? What is best for the family? I'll be honest, after the adoption there is little extra money for travel to Philly. We have been lucky so far in getting help with airfare and this last trip we were able to stay at the Ronald McDonald House. But, we still needed a hotel for a night, transportation to/from airport and hotel, eating out. Then there is the problem of who is going to watch the other kids. I admit that right now I am overwhelmed with worry about money. But, Philly is "the place" to go. They have the most experience with arthrogryposis. They see many kids a day similar to Ember whereas the local drs. see a handful like her ever. I have heard from another local family with a child with arthro and their experience locally was not good. They ended up going to Philly as well.
Ember is at a hard age for her. She is wanting so badly to be mobile. She watches Sienna play and she doesn't want to miss out. Her body just won't work. She can't grasp toys or pick things up. She can't push up on her arms to crawl, she can't grip a crayon, feed herself, rub her own face. She wants to so bad and can't understand why she can't. Now, I know she will find a way. Her way. But how do you tell her that? She doesn't understand yet. She loves to cuddle dolls and stuffed animals. LOVES IT. But she can't. I sit with her and wrap her arms around a "baby" and she just melts into it. She gets the most pleasant grin on her face and she will snuggle in and give it kisses. As soon as I let go of her, her arms drop to her side and the toy falls. It is for THAT reason that I will do my best to see to it that she sees the best dr. and has the best chance to gain any use of her arms and hands.

With all that is going in with Ember I have been feeling guilty about my other kids. The girls take a big amount of time/energy and sometimes I want to be able to always give each one all my time and attention. The boys are amazing with the girls and clearly the girls love their brothers. It is hard to balance sometimes all their needs and also their wants. My head knows that they are fine and that they get plenty but my heart still feels bad at times. I have also slacked on Sienna and some of her needs. I need to arrange an evaluation for her for oral motor stuff. She is weak in her jaw, has a strong tongue thrust, and I don't want her speech to be negatively affected any more that it already will be. I need to also set up follow up with her cardio - I am a couple months behind on that.
When Sienna was first born and I was struggling with my feelings and emotions about her diagnosis of down syndrome I quit reading books at night for pleasure, I didn't return phone calls, I didn't want to socialize much. It was pretty much "cope" mode. In some ways I am there again. Not in a depressed way as much as overwhelmed. I feel like I have the weight of the world right now. Finances are not good at the moment, arranging Ember's appts, guilt over the other kids...I am starting to just "cope". I don't want to answer the phone. I don't want to answer questions on how Ember is doing, what is next for her, I am so tired. And irritable. One thing I know for sure - it is hard to hear people say "I could never do what you're doing.." or "I don't know how you do it.." or "bless your heart for doing this.." First, I am certainly no super person. If I can do this, anyone can. But even more so - does it look so bad from the outside that you think you couldn't do it? Are my girls looked at as such a huge burden that you wouldn't want them? Do you even know what you're missing? Do you realize it hurts me to think that people view my kids as a burden or someone that they wouldn't want to care for? Sigh. I am so proud of my kids - all of them. They are all as God intended them to be. Yes, I am tired. Yes, I am broke. Yes, I am stressed out, and frazzled, and busy. But I am full. I couldn't love these kids more. Sienna is the most amazing gentle loving individual. She is full of compassion, and she is smart. Yes - she has down syndrome and she is smart. She can't talk yet. She may never - but she signs with the best of them. Most people only see her babble and gesture with her arms. They see a 2 yr. old behaving like a 1 yr. old. They don't see that those gestures are signs. She is talking. The hardest part of Sienna having DS is knowing other people will not "see" her. They will see what is on the outside and they'll see the stereotypes of down syndrome that they've heard. They won't see the amazing person God created. They won't see her though my eyes. I wish the world could.
And Ember, oh the determination she has. She tries so hard to do things. Always. Yet she wakes every morning with a smile. She is always happy to start her day. Will she be given the chance in life she deserves? Will people see beyond the handicap?

Worth every bit!