The tapestry of the life of a medically complex family

Archive for the ‘Memories’ Category

7 days of 7 year olds

Another milestone: 7 years old. Sometimes in this life, you forget time keeps marching. Sometimes you feel like you won’t make it through. But then you arrive: 7 amazing years!

20130308-213915.jpg

20130308-213953.jpg

20130308-214010.jpg

20130308-214036.jpg

20130308-214058.jpg

20130308-214128.jpg

20130308-214209.jpg

20130308-214232.jpg

20130308-214248.jpg

20130308-214309.jpg

20130308-214331.jpg

Another Socratic Sunday

“Nature does not hurry, yet everything is accomplished.” – Lao Tzu

OK. Maybe not laundry, or vacuuming…

20130325-063653.jpg

20130325-063724.jpg

20130325-063738.jpg

20130325-063803.jpg

20130325-063816.jpg

20130325-063843.jpg

20130325-063902.jpg

20130325-063924.jpg

20130325-063939.jpg

20130325-063954.jpg

20130325-064012.jpg

20130325-064029.jpg

20130325-064047.jpg

1-on-1

My son is a twin. He’a a twin with a trach who has a twin with a trach. He also has a younger sister 17mos. younger than he, who is always with us too. Being a single Mom of many, one-on-one time is a precious & elusive commodity.

This morning he woke early & needed to run to the bathroom (14 ounces of fluid pumped in overnight…). I detached his feed and brought him out through the kitchen. Because it was after 6a, I pressed the start button on the Grind’N’Brew and gave up on the idea of getting more sleep today.

After feeding the dog & pouring my first cup, Trachboy & I snuggled at the kitchen table & talked about that today was February 1. We talked about January, what his favorite activities had been, and followed tangents from there.

Sitting, talking 1-on-1 with Trachboy, is his best environment. When more people are there, he clams up, he defers to others, he finds something else to do. 1-on-1 you see his sweet, loving nature and glimpse at things he thinks about, things he loves, what he wonders. This morning’s cup of coffee was my best event of the week. I am so thankful for 1-on-1 time with my special boy.

Socratic Sunday January 27, 2012

“Coming together is a beginning; keeping together is progress; working together is success.”
– Henry Ford

20130127-130706.jpg

20130127-130732.jpg

20130127-130752.jpg

20130127-130805.jpg

20130127-130823.jpg

20130127-130843.jpg

20130127-130852.jpg

20130127-130909.jpg

20130127-130924.jpg

20130127-130947.jpg

20130127-131013.jpg

Socratic Sunday

“Not life, but good life, is to be chiefly valued.”
– Socrates

20130107-012223.jpg

20130107-012256.jpg

20130107-012309.jpg

20130107-012325.jpg

20130107-012337.jpg

20130107-012357.jpg

20130107-012417.jpg

20130107-012435.jpg

20130107-012447.jpg

20130107-012500.jpg

20130107-012511.jpg

20130107-012532.jpg

20130107-012546.jpg

20130107-012559.jpg

Chasing

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.

20121113-141729.jpg