Like most things, the only way someone can truly understand what its like to have a child with special medical needs is to have a child with special medical needs. So it stands to reason that having special needs children in common can be enough to forge a strong bond of friendship between families. I smile politely and try to knowingly laugh along with friends and co-workers and their tales of “normal” two-year old woes. Picky eaters, mess makers, and first words, it’s all greek to me — completely foreign. I’m not bitter or bregrudging them their happy stories I just can’t relate to the experiences. Having friends who can relate to oxygen tanks, feeding pumps and nursing care can be a key to sanity.
Liam has had a great week. His big buddy, our day nurse, is out of the hospital and worked for 6 hours a day on Wednesday, thursday and friday giving Karin and I a bit of rest and the helping hand we’ve so badly needed. Liam has been responding well even if slowly to the change in doses for his seizure meds and has been an overall pleasure all week.
Unfortunately his bestest buddy, a toddler with some similar medical issues, has spent most of this week in our least favorite local hotspot, the Hasbro Children’s Hospital.
Karin and I are experts on staying at Hasbro. so when we know that people we care about are there it’s hard not to imagine what they are going through. As such, they have been in my thoughts all week. I went to visit for a few minutes a couple of days ago but was embarrassed by the attention I received from some of the hospital staff. We’ve grown close to many of the staff in the PICU but I was hoping to slip in quietly and support my friends without much of a fuss made. I was only partly succesful on that front. Hopefully not a bother to our friends but I’m pretty sure that I may have been a little annoyed watching friendly reunions in Liam’s hospital room while we were fighting the stress of our first few days of a stay.
Anyway, I’ve been sending as much positive energy as I can towards the PICU for them and if you could do the same it’d be appreciated. Not only for my friends, they’re a tough, resilient and loving family who have the strength and experience to make it through this (even if they’re not sure of that themselves) but for all the families facing a hospital stay. Unless you’ve lived it you’ll never understand just how difficult it can be.