Saturday, July 5, 2008

My day of extremes

This morning I read a blog of a parent who has a child with a severe disability. This precious boy has no muscle tone (so he cannot suck, swallow, or lift his head), he can’t see well, is non-verbal, suffers with seizures and frequently aspirates. I was VERY humbled as I read her blog. I was amazed at her strength and courage, even though she sometimes feels that she has neither. I felt that the issues we faced with our Matt were very small in comparison with the challenges that she faced. I was deeply grateful for Matt and that in the light of this other little boy’s story, our lives seem easily manageable.

This afternoon we popped in to visit our good friends who have an 11 month old boy. We had not seen them for a while and I was looking forward to reconnecting. As we walked into their home we were greeted by their precious boy who was boldly walking. I was crushed. The old enemies - hurt, disappointment and sadness ambushed me. It took all my strength to hold it together and greet our friends. I am not jealous of their child, in fact, I was thrilled that he had started walking. Yet it reminded me that Matt is…different, that Matt’s life journey is going to be so different, and that this journey is hard and in some ways is always going to be hard.

I am still trying to make sense of all of this – how I can feel so positive about Matt when I compare my life to one person, and feel so down when I compare our lives to another. I know in my heart that comparing is Bad and Very Unhelpful. Most days I am safely able to interact with others without Comparing, but today I wasn’t.

6 comments:

Cindy said...

Both extremes ARE difficult. I've found that the more I'm with other typical kids near Natalie's age, the more I have to practice being ok with it. And practice helps! Now even though it's in the back of my mind how far apart they are, it doesn't bother me as much. I hope Matt has the opportunity to have a lot of typical friends, both for him and for you.

Carina said...

I truly share that feeling. I still have a whole lot to be greatful for though, He can hear and understand and that is more that some parents have (ok, not alot more, but still!) Matt is gorgeous and even though he might be "different" to the norm, he has so much going for him. I believe he will find friends of his own peer group - meaning kiddos on a similar developmental age. It is however strange, how one could be fine the one day, just to have a meltdown for the strangest reasons. I remember that I had such a meltdown once in Toys R us, because it suddenly struck me that there simply is not a single toy in this whole shop, that my Nathan will be able to play with. I saw the bikes and trikes and I started crying! Kids thought I was somewhat crazy of course, but then, I just stopped going in there looking for something for Nathan. I let my seven year old run around and (sometimes) choose a toy for himself. But now, when I want to "shop" for Nathan, I go to Musica or "window shop" at Shonaquip! I guess one has to reach a point where you don't think of your child as a 3 year old, rather as a 2 month old. It is then easier to handle all the heartache... I still feel very sad when I see Nathan's "friends" from playschool when he was small - they walk and talk and throw tantrums. I caught myself the other day wanting to tell a mother to leave her child while he was throwing a major tantrum. He used to be in NAthan's class and she was utterly frustrated with her child's behaviour (which is absolutely normal for both mother and child!). I bit my lip, smiled at them both and walked on. If only NAthan could do that! But, one shouldn't get stuck in that - it does your own soul no good.
You guys are doing a wonderful job with Matt - and that is all that counts...Good luck!

Ashley said...

Hi Lloyd and Jacqui
Thank you so much for sharing so honestly - we pray for you guys as it is a journey - a journey that God has ordained. We hope to be a part of that journey in whatever way we can.
Ash&Sharon

Michelle said...

I've been dealing with those exact feelings lately as well. I keep hearing of young RTS kids talking or attempting to talk and my Austin just hums all day long. It's on those days that I look to the Lord for the strength to be a good mom for him. Big hugs, we'e in the same boat!

Sys said...

The ability, not to compare, sets us free and allows our creativity to flourish. :-)

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Julie Keefe said...

Let yourself grieve the missed milestones, Jacqui. That is part of being Matt's mama. Don't try to deny the pain..it only makes it worse. Your gratitude for what you have is obvious and that little boy is incredibly blessed to have you!