Archives for posts with tag: different

S4300599Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time.  In that time there was a comment made about the club of special needs motherhood.  Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed.  I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way.  When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community.  I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me.  This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard.  Even though I knew some disabilities were invisible I didn’t think about it much.  I do now.  I’ve learned to never compare – the same thing in two kids can look very different.  I’ve learned to reserve my judgment – you just never know what someone else is dealing with.  I’ve learned the power of empathy.  I’m reminded of the importance of laughter.  I’ve learned how to live in a continuous cycle of grief.  I’ve learned that to encourage sometimes all you have to do is smile.  Sometimes you send a text.  Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be.  I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate.  I’ve learned what it means to wait.  I’ve learned that what you say and how you say it really does count.  I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible.  In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with.  If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me.  I can’t imagine doing it alone.  Sharing life is such an important part of living it.

Joy

 

 

 

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img_4711One of the things I think Graham sacrifices as Grace’s brother is playing outside in winter. As noted several times before about Grace on the blog – she hates cold, and a cold windy day makes her incredibly unhappy. She complains and gives us looks like we are torturing her. Nonverbal communication at its finest!

I’m in charge of picking up Graham on my way home from work, and often I will hear other parents say things like “grab your boots so we can play outside tonight”. We hardly ever grab Graham’s boots because I know the likelihood of him going outside to play is slim. I hate that for him. The reality is that often times it’s dark before Kevin gets home and I can’t keep half of me inside with Grace and half of me outside with Graham.

This winter Graham has bemoaned several times the lack of snow. But this week it snowed! The first night Graham wanted to play in the snow so badly. I offered for him to go outside by himself, but he didn’t want to do that. So, we brought snow inside and he played with it at the kitchen table. We’ve done this a lot over the years. He gets cups and plastic food from the play kitchen so he can mold the snow into shapes. He also keeps plenty of sticks and rocks in a drawer in his room so he can add some natural elements to his snow sculptures. It’s not an ideal situation but it works.

But this week we had the good fortune of snow and the days being longer. So the second night we had snow Kevin was with Grace inside and Graham and I went outside to play in the snow. We did the normal things… snow angels, snowball fights, made tracks in the snow, found some icicles, went down the slide covered in snow. When a neighbor yelled out a greeting to us Graham happily yelled out “We are playing in the snow!!!” We went inside with wet boots and gloves and icicles in a bowl so Graham could do some experiments with them.

The third day it was over 50 degrees. We have no more snow. We played just in time!

It’s not always a sacrifice- it’s just different.

Joy