In those first few days post diagnosis, my head was spinning with so many new thoughts. Brochures and pamphlets were thrust into my hand along with a robotic pat to the shoulder. When I finally got home (after the emergency drive to another town to have a scan of my daughter's heart, no major holes thank goodness), I finally got the chance to sift though the mountain of information and start the search for answers.
Google was a good friend back then. I remember how I discovered that our high backed office chair was good for both breast feeding and as a make shift rocking chair. I remember being horrified by some of the things I read, like the statistics pointing out that my gorgeous infant had been born into the highest risk demographic for sexual assault. Who wants to be thinking about that when they have a newborn in their arms?
Finally, after so many Google searches, I stumbled upon Holland. Holland gave me perspective, and hope. I held onto the idea of Holland for a long time, though as the years marched on it seemed further and further away. It wasn't quite right anymore. It no longer described us.
This week a friend of mine posted a link to a new take on Holland. Another parental perspective. When I read it I felt such an affinity for what the author was saying. The anger and despair that so often chokes me was tangible. Our visit to Holland has been anything but scenic. We didn't draw the short straw with many of the normal health concerns associated with DS, my perfect daughter's heart has the tiniest of murmurs, her ECG was fine, she was blessed. When she was in Prep we found out that she has Grave's Disease (hyperthyroidism). Usually people with DS are more likely to have hypothyroidism, but my poor family genetics meant my little girl is an exception to the rule (Grave's is in my family 3 generations and counting). The toll this disease has taken on our little girl has made living with a child with an intellectual impairment just that little bit harder. Her little body struggles to keep up with day to day living and she can be more emotional than a hormonal adolescent.
I know that Holland would still be possible even with a dual diagnosis. The problem for us though, is that we are alone in Holland. It's as though there was a zombie apocalypse just before we got here and now that we've arrived, even the zombies have all fled. No one is left to lend a hand. We are not in a position to rely on family for respite. Nannies and babysitting is costly on top of all the normal expenses associated with raising a child with a disability. We almost never get time out as a couple and if we do we're back home within a few hours. I can't remember that last time someone babysat over night.
The end result of this is that at time I feel very worn thin as a human being. I am filled with rage, I am resentful, I am stressed. It has taken it's toll on every relationship I have. I bury myself in my work because it brings me great joy. I can achieve things and see an end in sight with the projects I run at school. At home it can be hard to remain patient with all 3 girls, especially when communication can be difficult at the end of a long day. All this leads into the beautiful spiral of shame and guilt. Holland never told me about that.
Next time you see ANY parent struggling, whether it's the mum doing grocery shopping with the 10 year old having a tantrum or the dad at the park with a toddler screaming because someone touched his truck, stop and spare a thought for their bigger picture. If we all stopped and helped that mum pack her groceries into the car, or struck up a conversation with the dad about how he's doing, we could be making a huge difference in the lives of an entire family. It is impossible to see every diagnosis or know what support network a family has. It is possible to make an impact by doing something. It is possible to be a part of a support network for those around us.