Markers of Time
I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.
It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.
One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.
I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.
A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.
A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.
A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.
What are two of your time markers?
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
Julia,
As you know, I have a nephew with Down Syndrome….and I am one PROUD Aunt too! But even though I am not the official parent, us supporting family members have these moments too.
The haunting: October 8, 1990 approximately 1:30 p.m. We found out that my brand new couple-of-hour-old nephew was born with DS and he was in serious congestive heart failure and if he lived long enough, would require surgery.
The good one: January, 1991 – that little booger came home from the hospital after having gone through RSV virus, pneumonia AND open heart surgery. The cardiologist at CHOA said the hole in his heart was the largest he’s ever seen and ever had to repair.
Next month he will be running in the track & field section of the Special Olympics.
Julia, congrats. Its great to hear stories of success and at Special Olympics everyone can achieve thier personal best!
The haunting: September 18, 2010. 12 hours post-op from a shunt revision when Micah was in scary shunt failure. Vomiting and true lethargy (floppy baby, not just tired). Had to rush him straight into surgery for the second time in as many days.
A good one: March 22, 2010 one day after his first birthday, Micah took his first steps using a walker!