For the most part I try to stay positive and upbeat and enjoy my life for what it is. But there are those moments when I feel as if I am stuck in a revolving door and cannot get out. (Which, somewhere deep down inside, I admit I HATE those doors - have you ever tried to get through one with a double stroller??)
Towards the end of today, I was once again stuck in the revolving door. Shawn and I have not seen too much of each other lately due to long days at work (him), marathon doctor's appointments (the kids and I), and now he is up in northern Maine for a couple days. As I was catching up with him on the phone today, I began to feel incredibly depressed. Just little things catching up with me.
Clare's orthopedic surgeon wants Clare to have a neurology consult. As he stated, this is not an emergency, but he wants to make sure there is nothing neurological going on with Clare. I don't want Clare to have this consult because I am afraid that they will find something (what, I have no idea). I asked the orthopedic surgeon if he felt this was absolutely necessary, and he said he did. He started to list Clare's "problems." As he stated it, she has something going on with almost every system in her body - cardiac, endocrine, orthopedic, gastrointestinal. So he feels it is best to have a baseline neurological exam done to rule out any other issues.
Dr. Mervis from Kentucky called this afternoon to confirm Clare's visit with her in November. She started to ask questions about the services Clare receives. When I told her it was PT every week and OT every other week, there was stunned silence on the other end of the phone. Dr. Mervis was aghast that Clare was only receiving those services. She said Clare should be receiving OT every week plus speech therapy every week. She does not feel we should be waiting until we see her in the fall to get these additional services into Clare's IFSP. That Clare really needs to be doing this now. As she bluntly put it - if a typical 2-year old did not string two words together, they would be in speech therapy. Individuals with WS have the most trouble with their fine motor skills. (I think she basically thought that what our therapists have been saying about Clare's fine motor skills being acceptable was BS and that these programs are usually understaffed and thin-budgeted, so they're looking for the least services to give a child.) These are the two areas in which Clare's services are minimal or non-existent. For the first time, I realized that I may not like hearing what Dr. Mervis has to say about Clare. It's not that I agree or disagree with Dr. Mervis, but more therapy? We just cut down on Clare's therapy and thought she was doing great (which she is). At the same time, though, I don't want to do anything that would be a disservice to Clare. Dr. Mervis stated that now is the time to have Clare receive as much as she can because it's not as easy once she starts school.
So the Mommy Guilt has now kicked in. It's always something new to deal with. Clare has PT tomorrow, and I am going to discuss with her therapist about the possibility of adding services. I see a future of always fighting, fighting, fighting to get what my child needs. Maybe it won't be that way, but tonight I don't want to fight anymore. My energy is sapped. Ironic that the doctors want to do more and I don't want that, and the therapists want to do less and I don't want that either. When will it end?
I treasure my precious few alone moments with Simon these days. His needs are so few and so simple. Something to eat, someone to cuddle with and smile at him, and someone to change his diapers. These are needs I can easily meet. As Clare gets older (and Jamie, too), sometimes I feel as if I am not adequate enough to meet their needs. There was a 40-year old woman at the picnic this weekend who was there with her mother. As they were leaving, the daughter said to her mom, "I behaved well, didn't I?" This is one of those days, when the giant chasm seems to open before me. That I will be that mother, forever with my child who will never grow up. And it makes me want to cry. Cry because I don't always want to be that mother. And then cry because how could I feel that way about my child? Appropriately, I am listening to my iTunes as I blog, and the line that Sarah McLachlan just sang was, "I am a trainwreck waiting to happen." That is excactly how I feel sometimes, and I am doing everything I can to stay on track.
P.S. Okay, so the next song in my iTunes is called "Endless Night" from the Broadway version of The Lion King. "I know that the night must end. And that the clouds must clear. The sun will rise." I guess my iTunes playlist really do say something about me.