The tapestry of the life of a medically complex family

How it is Done

The number one question I get from others: “How do you do it?” If you want to know the specifics, you can read about one of the typical days here. But most people are really asking “How do you get ALL of it done? How do you keep going, day in & day out? Where do you get the strength to get up each morning and ‘have at it’?”

My standard short answer is: I just DO. And sometimes not very well… but when it’s a person who really cares, who may have the same things they need to do every day, who might be feeling like they cannot keep on “doing”, I try to give it more thought. Here’s how I think I get through each day:

I am aware of the “big picture” but I work to not get bogged down by the overwhelming list of things, start to “finish”, of every day. I try not to look at everything ahead all of the time- if I do it will quickly overwhelm me. I try to keep really focused on getting the next thing done. I try to remember I am only one person, I can do one thing at a time. I am bad at cutting myself some slack but I have worked to get better at it.

Probably, most importantly, I try to spend part of every day ‘being present’ – noticing what my child or children are doing. Remembering that they have each other for the future. Really watching & experiencing the wonders they really are- looking at how far they have come, the love they show for each other, caring for others. It helps to remind me that, altho I sometimes have a bad day/ horrible parenting moment, my kids really seem pretty ok- sometimes bratty or crazy in their own rite- but then they show me who we really are as a family. Sometimes, when I ready to leave for the grocery store and the twins hug me & say I love you, they call for their sister who they give the same. Something about your 4yo blowing kisses to her sibs to say goodbye, waving & yelling “I LOOOOOVE YOU!” back thru the door- it just lifts you. Days are harder when I don’t have the time to ‘notice’- and sometimes there are lots of those. There is a great blog post about parenting. It’s not exactly about my experiences, but it’s a good reminder to all parents- a quick summary is that we will look back & be happy to have parented, even if not every moment going through feels all that wonderful. (Huffington has that post here)

I always close EVERY day singing “Love You Forever”, 1-to-1 with each kid. And they sing back in their own way- they actually have become good at it. Its my way of telling them, no matter what, at the end of the day, you are the love in my heart- and you always will be.

And whenever I need a reminder of what it’s all about, why it is that I do what I do, I only need look here:

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