Life Support

The season to give thanks for all we have is upon us.  The tradition started when European settlers thanked the Native Americans for graciously offering all of their land to the settlers. It has now morphed into a day where we thank the industrial food chain for being able to produce a meal of roughly 498,000 calories easily and cheaply.  And while I am deeply grateful for this economic development, I am even more thankful for the family with whom I get to share it.  This post is dedicated to both my family and Santina’s family, both of whom enable us to live our fantastic life, a life that not all parents of disabled children are able to live.

If you are familiar with the show Tosh.O on Comedy Central, you might be aware of a recurring skit called Na-Na-Na-Boo-Boo, Stick Your Head in Doo-Doo.  Daniel Tosh takes an internet video of a fairly simple task and then mocks it by performing the task better than the original.  The gag is mildly entertaining at best, but is one that comes to mind when I hear stories of other families, struggling with child care or respite time.  Admittedly, that thought is selfish and judgmental, but it does come to mind.  The families of many special needs children are hesitant to watch the child or care for him/her for extended periods of time.  The fear of something dire happening on their watch is too great or the time and energy burden is too much for them.  Well, not our families.  They are eager to help both the children and Santina and I. Hence the thought, “my family is so awesome and better than that family and I am so grateful for that and my kids are so lucky and I bet that parent is really, really tired.” (As a literary aside, I think when a writer provides internal thoughts as dialogue it should almost always be in James Joyce-ish stream of consciousnesses.  No one’s thought process has much punctuation.)  I am so very thankful that those caregiving fears or impositions on their time do not prevent either set of grandparents from offering help.  That willingness to help is met by Santina and I with a desire to not over-burden, not over-impose. As the quarterback of our logistical life, I try to reduce the burden as much as possible, separating times of care. If you want to see sarcastic, narcissistic, and blue comedy (I do), Daniel Tosh is your guy.  If you want to see a great, uber-functional, supportive family, I feel like we could be the standard bearers.

And now, the entire care-giving squad that I am so appreciative of finds themselves in a period of change. Jackson is getting bigger and bigger, becoming more difficult to move.  We are expecting to get a lift for our house, not of the elevator type, but a portable one that can move him from bed to table to chair to couch.  If you have ever said, “I’d like a big ass medical-equipmenty-looking thing in my living room,” then this is the item for you.  And we are also starting the discussion on a handicap accessible van, although that is some time off.  Still, these items are important for Jackson, but also for those that care for him, enabling them to continue to provide the outstanding care they do now.

Again, thanks to all of our family, Barb included, for all of the help provided.  It makes me think of a great line from Macklemore’s song Growing Up. “The quickest way to happiness? Learning to be selfless.” I am happy to say that my family lives selflessly, that my children are the beneficiaries of it, and that it does indeed lead to great happiness.

New Fathers, I Challenge You To Not Tear Up When Listening To This

Pictures, including some repeats, are below for all to enjoy, especially  Alana Donald, mother to my beautiful godson, Charlie.

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3 responses to “Life Support

  1. Thanks for sharing your thoughts and pictures about your wonderful family. I am always inspired when I read your blog.

  2. The pictures are great! Especially the toy sharing one and pantsless Luca. Too funny! Thanks for the shout-out, I always love reading the blog and seeing all the pictures of your beautiful family. We miss you all!

  3. Pingback: 10 Things You May Not Know About Me | cincinnati b(liss)·

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