Take another little piece of my heart

February 26, 2007 at 1:00 am | In Parenting skills (or lack thereof) | 10 Comments

As a parent, you wonder about all the decisions you make in relation to your children and whether you are doing the right thing.

With a special needs child, I think you wonder even more than normal. The Doctors make recommendations for treatment based on the 5 – 10 minutes they spend with your child every 3 months or so. The parent spends so much more time with the child but aren’t you supposed to take as gospel the recommendations of the Drs? Hubby and I have talked about it and we don’t think we will go the botox route again. This is a hard decision to make and I can’t help but wonder whether it is the right decision. But I don’t feel comfortable with injecting poison into my child’s muscles every six months. It isn’t as if the botox has made significant changes anyway. We still have the same problems pre and post botox.

The questioning of your decisions is more than just the decisions about medical treatments. What keeps ringing in my ears is a comment Emma made about how (growing up) she always thought that if she did all her physio exercises and stretches, then one day she would walk. This is what she was led to believe but it didn’t come to fruitition.

I wonder if we are doing Moo as dis-service by telling him that one day he will be able to do things. The truth is, we don’t know what he will be able to do. We hope that the ABR will give him function that he wouldn’t otherwise have.

Over the weekend, we did a major clean up of our yard. This involved numerous trips to the dump with our garden rubbish. While we worked, Master C ran around “helping” us out by picking up the small stuff. Moo was plopped in his chair and given some toys to play with. He was put in a place where he could see us which wasn’t where he wanted to be. He wanted to be helping us like Master C. And while we worked, Mitchell did what Mitchell does – demanded to be fed every 2 hours (seriously, how much does this baby eat!).

Later, after we had finished, Moo and I were sitting together.

I was telling Moo how we had gotten rid of a lot of junk. Moo looked at me with a serious face and said Me wanna help. I said to Moo that he will be able to help when he gets bigger.

Me big now.

I love you Moo. You are a big boy now.

10 Comments »

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Jacqui, I never meant for you to worry when I made that comment on my blog and I do actually think you are doing great by Moo and the rest of your kids. HUGE (((HUGS))) love, Emma

Comment by Emma — February 26, 2007 #

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I know it is no comfort to Moo, but he definitely helped more by NOT running around and ‘helping’ like Master C, who I tripped over a couple of times. And I reckon Ad would happily haved changed places to become a simple spectator instead of a worker – the difference that being a teenager makes. But Moo’s running commentary on “Where is…?” and “What’s …. doing?” helped me keep track of where everyone was as I had to keep answering him. But certainly next time, and with all those palm trees in your yard there will be a next time, we will have to devise a way of getting him more involved. He is soooo sweet to offer…….

Comment by G-ma — February 26, 2007 #

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That’s mean, making the pregnant lady cry!

I don’t think any of us know what our kids will do when they grow up, and I don’t think you do Moo any disservice to leave him with big dreams at this age. Just as other kids imagine they will be astronauts or basketball stars, I think he needs to believe right now that he can be anything. It’s the only time in life you have that kind of blank slate.

No matter what, he will get around – one way or another – at a pace that I’m sure will rival his brothers. And unfortunately, by then he probably won’t want to help anymore!

Comment by Mete — February 26, 2007 #

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If Moo is anything like my son, he lives to contribute. It does so much for his self-esteem.

Comment by Jodi — February 26, 2007 #

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Hi Jacqui – I remember Emma’s comments on that very clearly and she was talking about how her parents would encourage her to do her therapy and say that she needed to do it because it would help her get better. Then one day her mother had to sit down and tell her CP doesn’t get better. Emma please correct me if I am wrong here.

I thought about that too. I think it is good to be careful in terms of setting Ellie’s expectations. This does not mean that I don’t want to push her and give her strength and encouragement to acheive. But I had been telling her, Oh you have to do this because it will help you get better. God- I would not want to have to do a repeat of Emma’s mother’s conversation. Though Emma was saying this in the context of how her parents pushing her helped her achieve things she would not otherwise.

Forgive me Emma for recounting this – and correct me if I got it wrong. That whole cyber conversation with you was so helpful to me and will be one of those life lessons that is making me a better parent for Ellie. Thanks for that. Your perspective is priceless to me in many ways because I don’t know what it’s like to be a kid with cp and you do. It helps me to read your blog and comments on my blog.

Hugs all round. Moo is such a sweetheart.

Kathryn

Comment by Kathryn — February 26, 2007 #

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It is strange the things that we keep in our memories. I only occasionly read the blog links from this site but I also remember Emma’s comment and it has also made me more aware that walking on his own may not be the best outcome for Moo. Until then, I certainly had not realised how much effort and possibly pain it causes for those with CP to do some of the things that we ‘normal’ people take for granted, because it does not hurt us to do these things. But I certainly agree that having Emma and her blog available are a big help with our understanding of what the littlies are going through and may face in the future. So thank you Emma. To everyone else, I guess all we can do is keep the goals for the special children achievable, and keep on encouraging them. In all this, Jacqui is doing a fantastic job.

Comment by G-ma (Jacqui's Mum) — February 26, 2007 #

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I can totally relate to what you are feeling. My oldest daughter was born without her right ear. We had visited the otolarynologist and they had assured us there were surgeries for when she was older to give her a ear and a ear canal. At the age of 16 they told us that would no longer be an option. So for many many years we thought she would be like everyone else with two ears and she thought so too. And when we found out that they couldn’t do it I felt so bad, it broke my heart. For so many years I thought it would happen. She is the one that had accepted herself as she was and she was happy to be just Kate with one ear. She helped me accept it. It is a long road, and you just never know what your children will have to deal with along the way. I am at peace with knowing my daughter is happy to be who she is and has accepted what I could not. She has helped me, the parent, the adult to accept what God has given her.

Comment by paula — February 26, 2007 #

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I think that we influence our children’s future in a very fundamental way – not just by the things we do, but more importantly by what we believe ourselves.

The problem is that we just don’t know what exactly the outcome is going to be. We need to aim for the ultimate, hope for the best. I’d rather explain why something is not possible right now than having to say: I didn’t want to let you try/ push you, cause I thought it was going to be fruitless. And now we’ll never know.

Jacqui, go with your gut feeling about the Botox.

And Moo, yeah for wanting to help!
Nelba

Comment by vygie — February 26, 2007 #

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Jacqui,
Even reading the title on this post makes me cry.

I never feel like I am doing enough, and am constantly second guessing my decisions. On the one hand I would do ANYTHING to help Eden. On the other hand, how much are the hours that we focus on therapy and treatments actually helping? I don’t know the answer to that questions. I guess I am striving to find the right balance between all the WORK, and the time we spend just letting them be kids and trying to have fun.

Sometimes, it’s just so darn hard.
Billie

Comment by Billie — February 27, 2007 #

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Thank you for all your comments. It’s re-assuring to know that I’m not the only one who questions my decisions.

Emma – thank you for contributing your thoughts here and elsewhere. You have opened our eyes and I would never want to not know this stuff.

Mum – thanks for helping us out on the weekend. I fell over Master C a couple of times too.

Mete – your right, by the time he can help, he won’t want to anymore.

Jodi – I hope Moo turns out as well as Kellen has. He is such a beautiful young man and you must be so proud.

Kathryn – I agree with your thoughts on Emma’s comments. It’s great that she has enabled us to see the other side.

Paula – thank you for sharing your story with us. It’s funny how our children “get over” things far easier than we do at times.

Nelba – the other thing that goes through my head is that if I tell him that he can’t do something, then does it become a self fulfilling prophecy? I guess that is why I try to give him hope that he will be able to achieve stuff that the Drs have told me he may not be able to achieve.

And Billie – you are so right – it is so darn hard.

Love,
Jacqui

Comment by terriblepalsy — February 27, 2007 #

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