Wednesday, August 7, 2013

One of those days

It's impossible to ignore the fact that today would have been Ella's first day of kindergarten if she were healthy enough to attend. My news feed on Facebook is flooded with back to school photos. For most parents and children, this is one of the biggest milestones in a child's life.

I know, I know, things could be worse. I'm "lucky" to still have her here after everything she has been through, but some days it makes me angry that the "it could be worse" is that she could be gone; that we're that close to the bottom of the barrel, so to speak.

For the most part, social media has been a positive thing for me. I have been able to connect with hundreds of other special needs moms because of it, and made some real and lasting friendships that would have never happened otherwise.

But the downside is that when everyone is putting their lives on display, we tend to compare ourselves to everyone else. And it's impossible to ignore the missed milestones that continue to come over and over again. First steps. First words. First day of school. Etc., etc., etc. The list will continue to go on.

I don't enjoy having these pity parties, but we're all human and sometimes it's easier to focus on what we don't have rather than count our own blessings. And I honestly don't mind if seeing our struggles makes others appreciate what they do have, because most days are fine.

I try not to dwell on how difficult our life can be. Like anything else, I have honestly gotten used to it for the most part - the frequent hospital stays and the headaches that come along with managing her nursing, prescriptions, supplies and equipment. It's just our life. But some things still smack me in the face and stop me in my tracks, and this is just one of those days.


  1. hi. I realise this is an older post, but only just came across your blog and just wanted to say that this strikes such a cord with me. Our daughter was also born in 2008 and has complex medical needs. Just really good to hear someone else voicing the same things that go through my head...even though of course, like you, I know things could be worse...but just some days I need to say that actually this is all pretty tough.

  2. What Joanne said. My situation is very different in that we had 11 normal years first, and what we miss seems smaller, but my heart echoes your pain: No school pictures, no 8th grade dances, no more sleepovers, no more....
    I'm fine, usually. But then there's that one. more. thing.


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