Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Thursday, March 8, 2012

Teamwork Makes the Dream Work

A lot of people have asked me this week how they can help.  I am horrible at accepting help, and even worse at asking for it.  On the extremely rare occasion that I have secured some help, I'm terrible at delegating.  That is the main reason we no longer employ aides for Ali!  Anyway, I've been giving our current situation a lot of thought, and I've been pondering some excellent advice I was given by a mother of a boy receiving the same treatment as Adam.  This time I really do need help.  And I shouldn't be ashamed or feel guilty for asking for it.  Sure, I am able to cook and clean and do laundry, but I really *shouldn't* be focusing on those things right now.  Adam has to get better.  Unfortunately, he also needs to work.  In order for him to focus what little energy he has on working, I have to do everything else for him.  That means all of his medical care and a lot of his personal needs.  Also, the children need me.  Ali needs medications 4 times a day, he has 3 therapists, and needs more help than the average 6 year-old with daily tasks.  Also, Finlay has developmental issues, a speech therapist on Wednesdays, and the normal demands of a 2 year-old in nappies.  Not to even mention my only neurotypical child, Calum, who we homeschool.  With all these exceptional circumstances in one household, that means I'm pretty much stretched out to the limit.  Even if I find myself on the odd occassion with spare time and energy, I should be spending that cuddling up with my boys on the sofa, playing games with Finlay, talking with my wonderful husband, or just plain reading a book with my feet up.  I have to keep convincing myself that it is okay to pass the baton to my amazing caring friends and family so I don't end up cracking and crumbling into a shattered mess two months down the road.

So, having said all that, I have decided to post a list of things that I'm anticipating needing help with.  My lovely in-laws are leaving tomorrow, so I'll be on my own as of this weekend.  My hope is, that by posting a list of "responsibilities" those of you who want to help can sign up for whatever tickles you.  You can email me at or send me a message on Facebook and let me know what you would like to help with. 

I would love to start having dinners brought as soon as possible.  As many of you know, we are on a gluten- and dairy-free diet.  To add another complexity to the mix, Adam is now sodium-free.  He has to avoid salt to keep his already faltering potassium levels as high as possible.  So, obviously, no table salt, soy sauce, seasoning packets, or anything processed.  Canned beans and vegatables are okay if rinsed well.  And I've been pleasantly surprised by how many low-sodium and sodium-free items there are out there.  We scored some sodium-free ketchup today, and Adam is so excited!  Another challenge is the thrice-weekly blood runs to Winchester.  Adam has to have his blood tested every Monday, Wednesday, and Friday.  I've been trained to draw the blood at home, but the tubes need to be dropped off at the Diagnostic Center at Winchester Medical Center.  I usually draw at 8:30am, and they have to be in the lab's hands by 10:30am.  I can do it on Mondays, because I can tie in our weekly shopping trip to Walmart at the same time.  But, perhaps a babysitter for Monday mornings could be helpful.  On the other days, if anyone is able to take a day to deliver blood/urine samples to the lab, that would be great.  One other issue is Ali's weekly therapy sessions at Berryville Primary.  Mornings here are really hectic with bag changes, pump programming, dressing changes, not to mention Ali's medicines.  If anyone would volunteer to pick up Ali on Thursday mornings (he needs to be at the school at 8:45am), and bring him to the school it would be infinitely helpful.  He has PT, Speech and then OT and is done at 10:15am.  I can probably pick him up, or if someone else was able to pitch in with pick-ups, that would be awesome.  I could also use someone as an emergency mid-week grocery shopper.  It's inevitable that before the weekend I'll run out of half-a-dozen things and need to run to Food Lion to get them.  If one or two people wanted to sign up for those random Food Lion runs, that would be fantastic.  I can provide Food Lion gift cards to pay for the items.  Finally, help with laundry would be appreciated.  I usually wash about 2-3 loads of clothing a week.  With Adam working at home, and homeschooling, we wear the same things for several days in a row before washing.  So, laundry is pretty minimal, but I won't be able to get around to it regularly.  If anyone would like to be a laundry helper, you could choose a regular day to collect a load or two once a week.

So, these are the most glaringly obvious challenges that I can see in the coming months.  Please contact me if you can help, and if you aren't local or aren't otherwise able to help, prayers are always appreciated!  Adam has his first MRI scheduled for next Friday, and we are already getting nervous about it.

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