I thought this was an appropriate evening to sit down and right my next post, mostly because I am feeling somewhat emotional – so bare with me if there is some ranting, but also because I wanted to share what ‘going home’ means for us.
We were thrilled when the doctors told us that we could go home, Daniel was doing clinically well and on February 14th (Valentines Day) the doctors gave us the green light. I remember so clearly the three hour drive and picking up our doggy, who was so graciously bunking in with amazing friends of ours; and walking through our front door and realizing ‘wow! look how much space we have, we get to be home!’ We were excited but there was another emotion lingering – especially for me! Absolute FEAR!
You see, in the hospital, when MAS reared its ugly head we were surrounded by doctors and nurses with equipment and technology that when used immediately could save our sons life. But at home, it was just us! We are solely responsible to watch for an undetectable blood disorder that could in a matter of hours take Daniel’s life if not treated quickly! I know what your thinking…”Holy Cow, could you put enough pressure on yourselves” I know, I know. its ridiculous but this is how I was feeling. Its tempting to want to put Daniel in a little bubble and let him run around fully isolated and contained but safe from the rest of the world. But at the same time, I don’t want him to not ever be able to feel like a normal boy, to run and play and have friends, and grow and experience things.
I think we all as parents feel this way about protecting our children at some point, only for me its at the back of my mind all the time. Doctors orders for Daniel were to continue with his steroids, make sure he was getting his daily injection, and if he had any fever over a 37.6 (99F) we need to immediately take him to Emergency.
OK, here comes the rant, for a child that has visible disabilities, in a wheelchair, crutches, blindness, deafness etc. hopefully…in most cases, people have a tendency to be compassionate, caring, understanding and accommodating. But for a child, like Daniel, where things aren’t quite so obvious things become easily forgettable. (except of course for the parents who just spent 3.5+ weeks in hospital with him) When we go out in public, and people see Daniel when he is on steroids and he has gained 20% of his body weight while taking a medication that causes him to eat all the time, and retain water, they don’t first assume he is sick, they assume we overfeed him. That he is overweight! I can’t tell you how many times I was ashamed to take him out because of comments and nasty looks I would get from complete strangers who know nothing about what we have been through. People who give us strange looks in the store because Daniel has a fit of roid rage (which he cannot control, because of the medications he is on)
But not just that, people forget that a flu, cold, or tiniest little germ infected bug can cause Daniel’s MAS to come back, can give him a fever and than we are a minimum of 48 hours, in the hospital. So when we leave because we see another sick child at church coughing, sneezing or with a running nose near him, or we ask people to wash there hands before feeding him a cookie, or not let there dogs lick his face or hands, or wipe down the highchairs at a restaurant before sitting him in it, we have eyeballs rolled at us, because we are paranoid, overprotective parents.
Please!! Please!! don’t judge. Because we are working our darndest to protect our child’s life, and you may not know the whole story.
OK, rant over.
So now that we are home, we can try our hardest to pretend that our lives haven’t just been turned upside down, and that we can go back to our new normal. Our new normal includes daily injections administered by Will or I, dealing with a child who is not sleeping, constantly eating, cannot control his emotions to a wild extreme, a minimum of once a month drives back and forth 3 hours to Toronto for follow up testing, weekly blood work at Victoria Hospital in London, filling in all our doctors here in London what has happened with Daniel, working full time, going back to daycare and being pregnant,
Its funny, now that I see it in writing it seems a little bit crazy, but this is our life, and we are so happy to be home. That in between the moments of craziness we have moments of incredible joy. When Daniel laughs, or gives us ’tisses’ or smiles and melts the hearts of people around us we cannot be happier to be back home.