“Not life, but good life, is to be chiefly valued.”
– Socrates
Socratic Sunday
January 6, 2013
Best Laid Plans
January 4, 2013
Ah, the plans we make. One of my goals for the coming year is to write here more often. I love to begin a new year with a beautiful group picture of my smiling kids. I had plans for sledding and lunches with my family & the birth family.
We all know what happens with plans, especially when kids are involved. Add complex medical needs, family gatherings, multiple kids- multiples! Well, some days it’s a wonder that ANYTHING gets done.
No group photo got done until tonight but here’s the reality of my new year’s:
And one who worked SO hard NOT to smile…
10 Reasons Complex Medical Needs Parents DON’T Drink Wine- But SHOULD
November 20, 2012
10. If you drink too much you could get a headache & not be able to do the next 11 neb medication series…
9. Frankly, if you TRY to drink “too much” you will only pass out as you take a sip of your second glass- exhaustion will force you into a deep slumber & you will SURELY miss dinner.
8. Your “normal” child is prone to sudden onset severe asthma & she will begin to wheeze when you begin to pour…
7. The corkscrew has been repurposed to open medication ampules and it’s too much bother to clean.
6. The oximeters have “relax-dar” – if you so much as move the milk over to consider taking out the Riesling, they will inevitably alarm repeatedly until repositioned on both twins.
5. The next neb treatment is actually due now…
4. It’s time to blend, heat, set-up & begin the overnight feed so who has time to search for a back-up corkscrew?!?
3. Have you ever been to a home with multiples and had all of the kids well at the same time??
2. BEEP!! BEEP!! ‘No food out’- what the hell??? Didn’t I just flush the GTube 5 seconds ago???
And the number 1 reason parents of complex medical needs’ kids don’t drink wine:
1. He’s making that cough again. THAT cough. That cough that indicates tonight or tomorrow will be the date of the next ER visit.
Chasing
November 13, 2012
My kids are 6.5, 6.5 & 5.2 years old. They have never been to a parade. They have seen Macy’s parade on Thanksgiving & a bit of the one’s on New Year’s but have no real concept that everyday people actually go to & SEE these things in person. Having preemies that include twins with trachs, and a 5 year old with her own respiratory issues, fall & winter & early spring are times spent hunkering down away from germs, versus being out attending events. Group activities like parades or fairs never make the cut as “worth the risk” when thinking about my kids vulnerabilities.
As we began talking about Thanksgiving, my son remembered the Thanksgiving parade we have watched the last few years. (We are not a TV-watching family. TV is an ‘event’ in our home- so fairly memorable.) He asked if the parade was going to happen on Thanksgiving again- perseverative question cycles are a daily occurrence. I told him that it would be on and since that day about a week ago, he has checked in about 3 or 4 thousand times on the topic. (Thank you Autism)
I checked our town website and found out WE have a Veteran’s Day parade & that it was early Sunday afternoon. It happened to fall between all the multiple medical treatments that make up our life as a family with 3 complex medical kiddos, and it seemed reasonable to delay lunch to make it happen. He & his sister’s were excited to be going to see their first parade.
We drove downtown because my kids fatigue levels are way too high to make a half mile walk. By the time we parked, packed the stroller, got my 2 weakest kids buckled in, it was very near time for the parade to start. Altho it was just a short walk to the firehouse, it took us until 1:01p to get there. Yep. ONE MINUTE after the parade began. They saw the veteran’s on motorcycles and the fire engine that were the tail end of the parade. We tried to catch up- I put my other child on my shoulders so I could walk briskly while pushing the other 2. They saw the backs of our high school marching band…
Basically, my kids ALMOST saw their first parade this weekend.
But they enjoyed themselves anyway.
Sandcastle by the Sea
September 22, 2012
My kids have been to the beach a few times. Sand and water are not a great accompaniment for a trach so we typically go only after it has rained- to make the sand wet and less of a flying powder. Also, my kids have put their toes in the ocean but we give it plenty of distance because we know how each wave can be bigger than the last. Today we went to the beach to remember our friends who have died- to “send off a wish” as my youngest calls it. To remember and to hope for peace for our friends’ families, while creating some peace for our own.
Today was perfect beach weather for my kids: cool enough & cloudy enough to keep crowds of people away, moist sand after a night’s rain, cool damp air to enhance the moisture of their breath into their lungs. We parked the oxygen tank, found “wishes” and threw them into the sea. The waves covered the bottom of their boots and frightened Trachboy, so we retreated to the wet sand and built my kids’ first ever sand castle. It was a wonder to them and magical for me- I’ve never felt that comfortable with all that sand and water with my trachees. We needed today’s magic to bolster us through the week ahead. Hoping the peace stays with us a while.
A Second Helping
September 16, 2012
This weekend we got to go to pick apples again. It was a different event than the peaceful, leisurely outing of last year. Apparently, every weekend is a festival weekend at the apple farm. This weekend was also their community craft fair which made things EXTRA BUSY.
The highlights were the 3some enjoying their first “tractor ride” on a trailer pulled behind a red tractor – the DUSTIEST experience of my trached twins’ lives- & picking a GIANT bag of apples to bring home for making Gallettes and drying to eat for snacks. We will be needing to add some recipes to our repertoire in order to use all these up! Feel free to add some recipes in the comments- I can usually modify things to meet our grain-free diet. Enjoy our photos.
Basekamp Laundry Mountain 