Over the years, we have been working and praying toward life becoming just a little easier. Hoping for less pain and more joy for Riley, a little more sleep, a few less knocks, a little less struggle… Easier never really comes along despite our efforts; it simply changes.
Tag Archives: medicine
When I was young and seeking a career path, I wish my intuition/Fate would have led me to train in the practices I would actually need now that I am a special needs parent (maybe I should have paid more attention to the Ouija Board or Crystal Ball… hmmm where did I put that fortune cookie?). Anyway. Now, with a complicated (love these Politically Correct words! OMG) eleven year old son,
Our family friend, Laurie, volunteered to share a paper she wrote on the importance of Vitamin D. As caregivers, it can be challenging simply to keep up with daily tasks let alone keeping up to date on the latest health information.
Laurie sent this to me noting: “I was thinking about your kids getting sick a lot. They could be deficient, esp. Riley because he gets very little sun exposure and is on antiseizure meds. I have been learning a lot lately about the fact that a lot of us don’t have enough vitamin D because we don’t spend enough time outside (getting full sun exposure for at least 30 minutes a day). I am very interested in the work of the Vitamin D Council and have contacted them to get involved in spreading the word. I have summarized what I have learned in the attached article.”
Since his very first hours, Riley has taught John and I to be meticulously aware of his comfort and health far beyond the needs of any typical child. Each special needs child has a condition and experience unique to themselves; however, our shared experiences may still benefit one another as caregivers and attentive parents. This is especially relevant when addressing medical issues. There are also times I must remind myself to remain vigilant over every aspect of my son’s health no matter how long the list becomes.
Opening my eyes the sky was lightening with the break of day. Already past 6 am, simply still being in bed at this hour is a blessing. I took a moment to appreciate the quiet for a moment. The day is a little easier to face than it used to be. Riley rested and in turn I rested.
Our weekend started of full of promise and excitement. Our weekend began with a visit from “ReRe,” John’s mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.
Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League. Note, Ronan has discovered camouflage tie dye…. no stopping him now.
Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together. We drove northward to fossil dive off Venice Beach. The primary goal was simply to have some fun together. Fun has been sacrificed in our lives with the intensity of caring for Riley. Sometimes we wonder if we even remember how to have fun. The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible. We had some great fossil finds… those will show up later on The Shark Tooth Guy.
My happiest moment was stumbling over a Seahorse (no we don’t currently carry an underwater camera so I found a link). Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before. This time I made the discovery myself. She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on. Those encounters together are magical.
We were home by late afternoon and reality quickly reasserted itself. Do John and I really have the right to freedom at all? Riley was suffering for a day without us. He refused to eat dinner and vomited up his medicines. Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.’s dedicated to special needs children cannot work with him properly and we pay for that time away. Of course he lost all his medication. Riley took Zofran for the first time and to our great relief the vomiting stopped. However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.
We want to believe there will be some relief for all of us…. mostly for Riley, but as his parents we need a little joy in life too. Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.
We are all special… by Stacie Wiesenbaugh
Smiley Face And we were on our way home with Rx for morphine in hand to help get us through the night.
- Receive considerate and respectful care.
- Expect reasonable access to and continuity of care….”
The scene had horrified me, little did I know how close to my reality it would become.
Trying not to slip across the tile and spread the stuff more than absolutely necessary,
I rush Riley to the shower.
as if to say “Oh, glad that’s over, I’m a little tired now.”
No idea how he manages that.
Ronan cannot wait to get to Vacation Bible School.
We are all special… today I’m extra special… Stacie Wiesenbaugh