Sunday, March 30, 2008

Yes, I'm Guilty

Bennett had a physio appt. this past Friday. Jim and I felt so guilty because we hadn’t done much physio with him while we were on holidays. It was impossible to do during the 8 days of driving and then he was so miserable in Florida that we were just concentrating on trying to keep him happy. Anyway, we confessed our negligence to the therapist and she was very understanding and sympathetic.

He has made some progress though – especially with the amount of time he can spend on all fours and with getting back into a sitting position. We have another appt with the physio tomorrow and our first visit with the occupational therapist. I’m mostly looking forward to starting another therapy but also have some mixed feelings. I know from experience that physio is hard work and that most of the time progress is very slow. It can be hard to stay focused on the long term results when you don’t see immediate progress. We celebrate every thing Bennett does with his right hand because we know that it is hard for him – and we have seen some progress as we continue to push him. However, here is where my mixed feelings come in - I also know from experience that while therapy helps it doesn’t “fix” anything. No matter how much we cheer and how hard we work, therapy will not “fix” Bennett anymore than it has “fixed” me. It has without a doubt improved the quality of my life and my ability to do some things but it hasn’t made my injuries go away – I will live with the pain and effects of the car accident forever just like Bennett will always have cerebral palsy. Even though I know that, it is so hard not to get carried away with therapy. I find myself falling into the trap of thinking that with therapy and time Bennett will somehow be “normal”. I think a lot of people think this way – not only when it comes to me but when it comes to Bennett. The truth is, he’s not going to be “normal” – he’s not going to be “fine”. He has cerebral palsy and will have it and will struggle with it for the rest of his life. That truth is hard to face and I must say I prefer to stick my head in the sand sometimes. There is such a fine line between hope and accepting reality.

This morning Jim and I were struggling with trying to tape Bennett’s hand and arm. He was not happy with us at all and just screamed and squirmed. I found myself getting very angry – angry that we have to do this to him at all, angry that every day I feel guilty about not doing enough therapy, angry that he can’t be just a normal little boy and we normal parents with normal worries, angry that my leg aches so much that it makes it difficult to do stuff with Bennett and angry that all this work won’t “fix” him. That’s a lot of anger for a Sunday morning. It’s times like these that I have to remind myself to take a deep breath and take things one day at a time. Therapy is important but it’s also important that Bennett has time to just be a little boy and I have time to just be a mom – and I shouldn’t feel guilty about that, right?

And just because I feel guilty about being a bit negative in this post, here is a short video of Bennett at his last physio appt. He's doing great isn't he?!


The Ward Family said...

I constantly feel guilty that I am not doing as much as I should with Sammy too. I feel guilty about not doing SO many things with every one of my kids. I hope one day that will go away, but I doubt it. Bennett is doing so great!!! I love reading your blog. Sorry your leg hurts too!!!

Jessica said...

Ya know what, DON'T FEEL BAD! Logen gets 16 hours of therapy a week. On the weekends- we let Logen be a kid. Sure, we work with him, through play. But, we don't do stretching, etc. And- I don't feel bad knowing how much he goes through during the week. Kids also need to be just kids. They get put through so much more than other kids do. We have to let them be sometimes. KWIM? HUGS!

Kiera Beth said...

Barbara - Isn't Mommy guilt fun? You are doing great and it is always a balance between fun and therapy. Bennett is going great and is making wonderful strides. If it makes you feel better, I struggle with it all of the time and my OT has reminded us that we do need to make time for him to be a kid.

Mummu and Poppa said...

Barbara: No matter how 'healthy' or big your baby is you will always want more for him. That is part of being a parent - always wanting better for our children.

Bennett: You are perfect to us.
You are God's masterpiece and we love His 'work of art'. You give us such joy and pleasure.

We must always remember that each of us has a purpose in life. We don't always know what it is and at times it might be difficult to accept when we have to face it.

Although our 'road to travel' is not always as we would wish it (more mountain tops than valleys) it is always rewarding - you and Jim must be truly special because God chose you to have Bennett to share your love and family with.

Our greatest gift is love and as God loves us we must return His love. No one can love as Bennett loves.

Barbara: It is only natural to have 'good days and bad days'. We are here to help you be kind to yourslef. Take time to make and keep yourself 'well'.

... 'perfect' is in the eyes of the beholder and we are 'beholding'
God's Little Miracle - Bennett.

Just look at all of his pictures and see just how 'picture perfect' he is.

Thanks for Bennett and Mommy and Daddy.

Love and prayers to all
Mummu and Poppa
xxx ooo xxx ooo xxx ooo

Antie Gaetanne said...

Mummu and Poppa,

Your comments hold a lot of wonderful wisdom. I could not agree more, Bennett is a perfect work of art and his canvas will evolve as it should.

When I first heard about Bennett having CP I was saddened to some degree because he was no longer fitting into the future image I had created for him in my minds eye. I realized that this image was only my imagination. I reconciled myself by knowing that he was going to be a different kind of perfect. We all live different and unique lives through all our life experiences, be they easy or difficult, simple or complex, sad or happy. This experience will alter his choices in life and the areas he will excel in may change, but he will nevertheless excel - that I have no doubt. This challenge may even move him to exceed beyond anything I could have imagined for him in my mind's eye.

Your love and hugs are graciously accepted and reciprocated.
Auntie Gates