Help wanted: long road ahead

Warning:  lots of honesty ahead.
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I haven’t talked a lot about what this MS diagnosis has meant to me or our family.  I haven’t shared a ton about the infusions I am doing, except to let people know that we’re doing them and to look for help with the little boys.  But the truth of it is the path that we are on is hard.  This diagnosis sucks and the treatments aren’t super fun either.  Physically my body is not “normal” and probably won’t ever be again.  Going to Seattle every month for my infusion is expensive, it’s hard on our family, physically taxing for me while I’m there that day and requires a lot of planning and preparation to make sure everything is organized back at home while I’m away.  All of this, plus it is incredibly emotionally draining to get through another day of something I DO NOT want to do .  All of these things aren’t things that I (or our family) broadcast regularly.  We do our best to be positive, play the hand we’ve been dealt and live our life as well as we can in spite of the circumstances.
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I’m writing today because we need help.  Every month there is another infusion, every month we need help.  Right now, we are not getting the help we need.  I don’t say that or write these words to point fingers or blame.  Everyone is busy, our friends and family have lots going on.  I think it’s easy to see when help is needed when there is a crisis or a “big” event – a death or a new baby for example.  It’s easy to see what needs to be done.  We are not in crisis and every infusion isn’t quite a “big” event.  It’s not easy to see what help is needed and we understand that.  In a perfect world, I wouldn’t have MS and I wouldn’t be doing these treatments.  In an almost-perfect world, our friends & family would be mind readers and just intuitively know what we needed.  But those aren’t the worlds we live in.
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I will be going for an infusion once a month indefinitely.  None of the MS treatments have an end date.  None of them “make you better” or produce a “cure”.  So this will be something our family will be doing for a while.  Hopefully, it will begin to not be as physically taxing.  We’ve heard that it is a possibility that as we continue to have infusions, the physical effects of the infusion process begin to minimize.  So for now, we really need to ask for your love, help & support.
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Here are some specific ways we need help:
  • we usually need some help with the little boys the day of the infusion – a play date at your house or at the park, or someone to come here and hang out for a few hours
  • the kids often need rides to/from school or activities
  • the trip gets expensive, the costs out of pocket are usually around $100 for the day
  • help with dinner would be nice sometimes, even bake @ home pizzas ease the burden for Alex & the kids
  • the day after my infusion, I have tried hard to block my day out and do nothing otherwise I exhaust myself. Having a friend over for coffee helps force me to stay home and not do much. Help that day with fixing dinner or kids’ rides would be welcome also.

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The tangible help is needed because otherwise all of us – me, Alex and the kids – are all scrambling to make these days work.  It has been stressful these last few months and I’m not always resting the day after like I should be.  The stress of it just adds to the emotional toll that it takes on our whole family.  The help we get from friends and family will help to alleviate the stress and get the tasks accomplished.  But the intangible aspect of that help is that our family will feel loved and supported and NOT ALONE in this process.  And I’m sure you’ll agree that’s the most important help of all.

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Thank you for reading this and taking it for what it is – an honest request for help from the people who love us, an acknowledgement that we can’t do this alone, a way of giving specifics to our “tribe”, who we know *WANT* to help, but maybe just don’t know how.  And thank you for considering how you can help us in the months to come.  We are thankful to be blessed with a lot of family in the area, and an amazing community of friends.
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4 Responses so far »

  1. 1

    Sylvia Huecker said,

    Crystal, how I wish we lived closer so we could help in a physical way. I probably couldn’t keep up with your two little guys but I could & would be doing something to ease your burden. So…you are in our thoughts & prayers, and I will pass along your blog so other family members will know the situation. BTW, on FB, you make it sound like a breeze so maybe near-by folks just don’t realize the true need. Love you all,
    Aunt Syl

    • 2

      bradymom29 said,

      Thanks, Aunt Syl. That is one of the reasons that I posted this – I can’t change how I approach these things; I don’t talk about it too much or whine or complain. But then I think it does seem like we’ve got it all handled, when really we need the help & support! Thank you so much for your thoughts. I think I have also learned that I should be blogging about this whole journey more and sharing more of what is going on.

  2. 3

    crazy aunt Shannon said,

    Love you guys. How about giving out the infusion appointment dates ahead of time if you can? That would help me be better prepared support you with rides via Poulsbo or dinners. We can do this.

  3. 4

    Aleen Caplan Yamasaki said,

    ARGH! Wrote a whole response yesterday but it didn’t take. Here we go again. Crystal, Do you remember me from the SSYC a few years ago? I do “lurk” at your postings and blog sometimes. I can’t help with childcare in Kingston but, since I live in Edmonds and work near most hospitals in Seattle and have somewhat flexible hours, I can give rides to/from the ferry/hospital. Or I can provide some meals. Please contact me if that would help you.


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