Wednesday, July 25, 2007

Revolving Door

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.

8 comments:

Katie said...

"Revolving Door", thats a good way of describing it.
I dont like to think about the future too much, it just worries me - i sometimes think if we had spent all the time we were pregnant worried that our child would be unhealthy then we would have missed out on enjoying the time we had our babies growing inside us. Life is a bit the same i guess if we spend all of our childrens lives worrying about them then we will miss the time we do have to enjoy them.
Pah. Thats alot easier said than done.
As for therepy, i guess as hard and slow process it is, now is the most crucial time to act and it may just prevent an even longer detour in the road...

xxoo

Amy said...

Sweetie, you shouldn't worry about the future so much! Possibilites are abound and you cannot predict 2 decades down the road. Also shrug off the guilt, listen to Dr. Mervis and move on. You shouldn't feel guilty, how are you to know what is best for Clare ALL OF THE TIME. Listen to the experts, and decide what is best for your family. Ugh. sorry about the neuro consult. Keep up the excellent work! You are only one person and doing the job of 5.
xoxo
amy

Every minute counts.... said...

Thank you for sharing with us. I have walked in similar shoes...and I'm sure I will walk in them again in the not so near future. It is so hard to pick yourself up when you are thrown as much as you have been to juggle.The medical stuff in itself is so overwhelming..then you add therapies and other children and somedays it is better not to think about it. But we all know it is something you have to think about.
Like Amy said, you have to do what is best for your family. It is a learning process that throws you curves all the time.
As for the neuro..I feel for you. We saw them too. He established a base line and said we would meet again someday when we needed him.Thankfully that day hasn't come yet. I'm not sure who is worse to see the cardio or the neuro...it's a toss up...both are VERY important areas of the body. Here's to hoping you don't have to add him to the list of drs to see!!!
Noel

Nancy said...

I think Dr. Mervis sounds wonderful. I wish she was closer.

Don't feel guilty about anything...just be open to suggestions and, most of all, don't beat yourself up.

It's okay to vent too. As for not worrying about the future, it's pretty hard not to worry sometimes. We all do it. After all, isn't that what we are preparing for with all of these flipping therapy sessions? It's bound to cross your mind from time to time, and it's scary. But I'm hoping it's going to be oh so good for all of us. I still have so much hope!

Christina said...

I thought that beautiful Clare made me cry?? Wow - now I realize that my amazingly beautiful sister makes me cry more... and I know that you know all of this, Tree, but let me just say it - you are this awesome, awe-inspiring Mom to Jamie, Clare, and Simon. You are a fun and loving and caring Mom. You are providing your children this warm environment like we had as kids - this lifestyle that they will always appreciate and cherish. You are a Mom that I want to be like. You are MORE than adequate, not only because of who you are as a person, but also because of the strength that God gives to you. He knows this Plan - he designed this Plan for your family. And it is beautiful, and so are you.

Kim, Grandma to Ava,ws said...

If I could have a sister I would want her to be like Christina. How lucky you are to have such a warm and caring family.

I wish I lived closer to you. I would love to watch Jamie and Clare so you and Simon could have a whole day together, just the two of you.

Hang in there:)

Anonymous said...

Teresa - WOW, what a deep blog this is. I believe with all of my heart that you are the most wonderful Mother God could have ever chosen - yes, you were chosen! You are doing a fabulous job now, and I know you and Shawn (wherever he is..hahaha) will make wise decisions that may affect everything you are. Clare is wonderful, looks like any other 2 year old. Sure there are obstacles, but she is doing well - thanks to you! Keep your chin up, enjoy those quiet times, and look for the rainbows! I Love You all, Aunt Joan

Kerry said...

It's exhausting. And it will be for many years... it seems completely unfair and I completely understand where you are coming from. You are an amazing mother and have strength I don't see very often. You have a lot on your plate, and the fact that you haven't ripped all your hair out is amazing! :) I haven't had to deal with the medical issues you have with Clare, and I know that adding anything else to a full cup will only make it tip over.

Having said that,in my opinion, I think you should think about adding the therapies. If you add and you don't see any benefits in these next three months, then you have something to talk about with Mervis in Nov. I know I do a lot of what my docs say - Brady at 21 mos has PT 2x a week, OT 2x a week, Speech 1x a week - and Dr Mervis suggested adding more PT/OT... so guess what! Starting in Aug we are doing PT 3x a week plus getting an Educator 1x a week on top of everything else. I am following Dr Mervis' advice because of what my friend, a pedi nurse, said when Brady started Early Intervention at 4 mos old - his quality of life will be different because we got him in so young.

I think these kids will need breaks here and there - and so will we!!! -- but in my world, reality is that Brady is not talking, walking or eating great either for that matter. Clare was far more advanced that Brady is at his age.

I am all up for getting double pedicures and eat some really bad-for-you chocolate cake somewhere in the middle - just let me know :)