Now that the Olson house is back on schedule and back online I fear that I have lost my blogging mo-jo. Lucky for me the vast majority of my readers are friends and family who’ll probably not mind if I blather on and on about anything as long as I put up the occasional photo of Liam.
I’m still surprised at the success of the PICU Pressure series that reached so many new readers for the blog. A series that is far from completed by the way, since I still have a bunch of good things to say about Hasbro Children’s Hospital. I haven’t even written about the nurses who make it all work and the respiratory practitioner without whom we never would have survived the first two weeks there. Stay tuned for that. While I’m on the subject I believe that they are accepting donations through December for the fund-raiser so if you can spare it click the link at the top of the column on the right.
The PICU Pressure series only came to be because I threw the crazy idea out there and then felt that I had to come through and back it up because people were expecting it. So I’ll throw another wacky idea out there now with the caveat that it is an ambitious project and I’ve yet to get all of the photography equipment necessary ready to do it right. Maybe telling you now will be the kick in the pants I need to get it started.
It may not have been my intention when I started this blog but it certainly seems to have turned into a blog about the everyday life of a family with a “special needs” child. The problem with that is that about 90% of our needs, worries, and trials are the same as every other parent out there. The similarities between our story, and that of a family with “normal” (a term I hate to use but you catch my meaning) children far outweigh our differences. Who wants to read about the same boring day to day life?
Work, TV and play with Liam, Sleep, repeat. Just like any other family out there. The differences, though they may be small in number they can be significant.
One of those differences is the struggle to keep our house a home, rather than letting it turn into a clinic. A struggle that can be difficult when surrounded by medical equipment and sterile, single-use supplies. In this house Liam is not a patient. He is a little boy in the comfort of his own home. It is surprising how many nurses and therapists forget that fact asking for us to hang posters and instructions on the wall and on his crib. I already have a medical supply room instead of a spare bedroom. I don’t need laminated posters explaining things to any nurses who come through for a shift. They can ask and we can instruct. Liam needs posters of Lions and cars and Diego on his wall not scheduling calendars and medicine sheets. But I digress since that rant can be a part of the project. . .
In its own way this equipment has become a part of our own comfort. Believe me, when Liam is not here the ventilator-less silence can make this house echo with a cold emptiness. I may complain about power cords and oxygen tubing tripping me up a lot but at least its at home and I’m not visiting Liam in a hospital. But again, I digress…
The equipment and supplies here are what make it possible for us to tuck him into a crib in his own room instead of trying to sleep in a hospital chair next to his bed. It is a part of our family. As such, for the next series I am planning a sort of catalog, or glossary, if you will, of all of the stuff we keep around here that you don’t see in most homes. Pictures and descriptions to help de-mystify some of the strange looking things you’d see when visiting my house.
As I said before, it wasn’t exactly my intention when I started this blog to make it all Liam all the time. I thought it might seem exploitive and I wanted to maintain more privacy about our life. But if I can help another family facing life at home with a trach and vent see that it’s not only manageable it can be, dare I say it – “normal” than its worth staying up until 2 in the morning talking about peep valves and g-tube mic-key buttons.
Like I said, I haven’t exactly “started” this project. It’s still in a bit of a planning stage but if you find that after a few weeks you hear nothing new about it, feel free to take me to task for my laziness in the comments. I’ll appreciate the nudge.
If you hung in there through the recent and unexpected blogging hiatus — thank-you. . Let me know you’re here in the comments. That goes for the lot of you.
And here, just because you’ve all been so patient with me, here’s another picture from my buddy Belush’s visit to read to Liam. The book pictured above was actually a gift from Belush when Liam was just three days old and he has been dying to read it to him ever since. He has spent years perfecting the voices he uses for each character by reading the same book to his own children.