Monday, July 29, 2013
We went on a small vacation over 4th of July and had a blast. We got to take Monkey and Bear to a small (read: old) amusement park. It was great! They loved the rides and the excitement.
We're in the process of reviewing Bear's IEP and doing Monkey's annual IFSP.
Bear just had his 4th round of Botox. My lower back is aching from trying to help him walk everywhere.
We're discussing our future. Where we want to live for the happiness and success of our family.
Bear has become a professional duck feeder. We had lunch on a small lake today and I showed him how to throw the cookies to the ducks. I was certain that when I gave him a piece he was going to eat it. BUT he surprises me everyday and was so excited to throw it down to the ducks.
This weather has been insane. The other week it was 102 and then 2 days ago was 60. We've been spending as much time in the pool as possible.
We're planning a trip back to the midwest in a month and I couldn't be more excited!
I took a quilting class that threatened to do me in. It was insane.
I've been busy making quilts for bridal showers, baby showers and housewarming gifts. It's been fun to be getting things accomplished.
I cannot believe summer is halfway over. For the next two weeks I am busy EVERYDAY, in addition to taking Bear to and from school everyday and organizing Monkey's therapy.
Thursday, July 11, 2013
Today was our first visit to a new pediatrician for Monkey. We visited the practice a week ago for Bear, but saw a different doctor.
This doctor was an amazing resource and we had some great discussion. He was full of advice and clearly respected my opinion and the knowledge I have of the children. He also took a lot of Bear’s history into account because they have the same diagnosis.
I giggled at one point when he was examining Monkey and said “He’s the poster boy for hypertonia”. Monkey is much less affected than Bear, so if he thought Monkey’s tone was high, wait till he meets Bear.
We ended the visit on a good note and with a few vaccines (poor baby, but he was such a champ!). Then he busts out the “YOU’RE DOING A GOOD JOB. IF YOU EVER FEEL OVERWHELMED GIVE US A CALL.” I explained that we have excellent family support and that we’re all working hard and Monkey is doing a great job. He keeps going with “YOU’RE WORKING SO HARD AND WITHOUT YOU HE WOULDN’T BE GOING THIS FAR.”
This just struck a nerve with me.
1) I just met this practitioner, he doesn’t really have experience with Monkey or anyone with their diagnosis so it just felt like fluff. Like he was saying it because he should.
2) I’m not doing a GOOD job. I’m doing MY job. I am a mother. I signed on for this role when I got pregnant. I am going to work my hardest to help my child anyway I can, just like any parent would do.
3) By telling me I’m doing a good job and discussing whether I’m overwhelmed, you are just reminding me that everything I feel is normal, is not. That what I’m used to is not typical and not easy and it’s hard and never going to be normal. It’s this lovely roller coaster ride of grief. I’ve finally gotten through to acceptance, this is my life and I’m going to make it as normal as possible. We are a family, we go to the beach, the amusement park, the pool, the park, we hang out, watch movies, have friends over, etc. This is NORMAL. It has to be, because if I’m going to think of myself as “abnormal” or that I have it way tougher than anyone else, the future is a pretty bleak place. I’ve had to change my viewpoint. I have 2 children. They may be different, but they’re still children. We all still laugh, they have personalities, Monkey loves cupcakes, we all love swimming, we have bad times that are very bad, but we have good times. And those good times are phenomenal. Maybe because the bad is so bad that we know “it could be worse” or maybe because we know how far we had to travel to get to the good times that we can appreciate them even more.
4) And yes I’m overwhelmed. When I picked Monkey up from his stroller, I hugged him tightly to my chest and let myself cry. I am overwhelmed with love for my babies. They are each a piece of my heart walking around outside my body. And I think I love them more than typical parents because of how much they need me. To know that pieces of my heart are encapsulated in less than “typical” bodies is even scarier. To know that pieces of my heart are going to be stared at, pointed at, possibly discriminated against, mocked and/or ridiculed is overwhelming. I overwhelmingly love these boys so much, that at times it does hurt. To know I cannot “fix” their hardships, or let them take the easy route can be heartbreaking.
And then Monkey gigglesnorts (a totally infections giggle/laugh that ends in this super huge snort-probably because he found a morsel of food) and I know, it’s okay. I daresay, normal.