This morning is a hard morning for me. Three mito kids have passed away recently and I have followed their stories, one in particular. I have never met this family face to face, but I have read how he was such a lively child, full of life and fun and then his parents watched for two years as their son died in front of them, in their house, in their arms. I grieve for them and with them in a very surreal and perhaps unhealthy way.
I freely admit that since Will was diagnosed I am depressed and have major anxiety about the future and have used medicine to help me deal with all this. Well, being pregnant that medicine isn't exactly ideal for the baby so I'm off. I weaned off for the last trimester. That medicine helped me stay focused and less anxious, but it also gave me the ability to have a poker face about our life. It gave me a filter for my emotions so I wouldn't be a hot, irritable mess.
I'm not jumping off a bridge or in some deep depression because I'm not on it, but I am FEELING so much more. I can't pull away from the grief I feel for this family who lost their son, from the grief I feel for our family. Are we doing all this in vain? Will our son suffer the same way theirs did? What the hell will I do without Will? I so desperately hope and pray for a miracle, and I can't decide if that's delusional, but it's all I have some days. I just have to believe that something is going to happen to help Will. And I REALLY BELIEVE something will happen to help him.
I watch Will make amazing progress every week in school, OT, PT and Speech. He is a really smart, good kid. Why him? He deserves so much more than we can ever give him.
I grieve because I feel as though Will's story is parallel to so many others who have passed away, and have lived in pain. I do not want that for Will. I already grieve for his unborn sister, who should be totally healthy, but I grieve for her at the pain she may experience in her life. I feel bad trying so hard to have another baby, only to know that she's going to experience things no child should have to. How selfish of me to do this.
It's a "feeling" kind of day around here and that's ok. It feels good to cry, to have a stronger emotion than what I have been having but it's also really scary, overwhelming and just kinda of sad.
I just cry and get it all out, then breath deeply and remind myself to focus on the here and now, be in the moment with Will and enjoy everything each day offers - even the bad and sad stuff. Each day is a good day because I get to hug my little bud, play games and even get angry with him when he tests the boundaries of being a four year old.
One good thing about feeling more is when something is funny, it is really damn funny. This was my biggest laugh of the week,
http://suburbanturmoil.com/warped-childhood-restoration-hardware-style/2012/12/03/. I literally bookmarked this link so I could get a good laugh in whenever needed.
Painting a pumpkin - we do not need sharp knife work in this house!
Yes, the finished product is pretty much a black pumpkin with a few streaks of other color.
Dracula Mickey Mouse on a fake pumpkin. Gotta love Target finds that won't rot and are fun!
The soapy, bearded boy in the bathtub
Gymnastics - getting into handstand position
Feeling pretty pleased with himself as he held his handstand for the whole ABC song
Doing "Puppy dog" walk down the mat. He tried so so hard this morning to make sure his knees didn't touch the mat.
The "attitude" look - MOMMY, STOP taking pictures. NO!
Will recently started being able to balance on his knees. This is a pretty awesome accomplishment if you ask me. So today in gymnastics he was not only balancing on his knees, he was "walking" on his knees down the mat. He works so hard at things so many take for granted.
I mentioned this new accomplishment to his coach, Mr. Glass, and he immediately had the entire class do the new gymnastics trick - The Will Walk as he called it. He had each kid do it down the mat, including Will. You could tell Will was so incredibly pleased and proud to have something named after a physical accomplishment he did. I was living in the moment without my camera, so I didn't get a photo, but I will forever have that memory.
