You know, this week has got me thinking about Down syndrome. I was thinking about how sometimes it really does requires quite a bit of hard work. Hard work for Dylan obviously, but also for his parents and his sister as well.
For me and Dave, we find that some of this hard work comes in the form of performing certain secretarial duties. I can not tell you how many files and folders that I have for Dylan and the little guy is not quite 7 months old yet. This week in particular, I have spent a great deal of time on the phone with our new insurance company. This time I am trying to figure out exactly what our new plan is all about and why in the world we are now required to pay them $526 before they will even consider sending out our next synagis injection. Every day I must keep careful track of Dylan's schedule. Don't want to overbook the guy. Our calendar is filled with Early Intervention stuff, pediatrician appointments, cardiology stuff and now otolaryngology (pretty fancy name for a hearing doctor, eh!). I have to tap into my creative side each afternoon as Dylan tires of his bouncy chair and play mat. Because of his low tone, he is not able to hold himself together very well, thus we have pretty limited options for entertainment. Oh how I'm looking forward to the day when he's ready for his exersaucer and jumper!
For Cassidy, she must learn patience and understanding. She spends a great deal of time with Dylan's EI team and is clever enough to know that they are not here for her. She has spent the majority of the winter in our house so that we can keep her and Dylan healthy. She goes to doctor appointment after doctor appointment with us. She has given up lots of mama and daddy time while Dylan was in the NICU and then the PICU.
Down syndrome is hard work for Dylan. Dylan must learn to reach milestones with low muscle tone. He will have to work harder at every single thing that he does. Eating, reaching, rolling, sitting, crawling, walking. He will reach these milestones even though he underwent open heart surgery at 4 months of age. He will reach these milestones with hearing loss and with possible vision problems.
With all of this in mind, please know that I never said that hard work is bad. In fact, I thrive on a challenge. The hard work keeps me going. And to be perfectly honest, I think that all of these challenges are making our family stronger. We are already better people for having Dylan in our lives. This I know. Without question.
But...when we are in the moment and the hard work feels overwhelming, what are we to do?
Well, for one, we could dress him up in my err...I mean his, favorite pjs and take some cute pictures like this.
Orrr, we can just sit back and watch special little miracles like this. And know that every single moment of hard work is so worth it.