Chronic Illness
-
Souls and Stories
There is a two year old boy undergoing hip surgery today. Let that sink in – block out the distractions – and go back and read this sentence. And this is only one out of many children undergoing procedures today. I don’t know this little boy or his family personally, but the algorithm of instagram has introduced me to them. His name is Jackson. He loves Waffle House and he gets very excited about ice cream. He has blown the minds of his doctors with his growth and progress, and continues to grow and be such a light for my heart, and I am sure for many around the world.…
-
Looking Back. Seeing His Faithfulness.
If there is one thing I have learned about the special needs (physical/intellectual/emotional/behavioral/learning disabilities/differences- lots of way to phrase this) tribe, is that you upset one of us, you upset us all. Honestly, we try to breathe and let a few things slide, but it’s near impossible to do. I have been having a bit of a need to go back and look through a notebook/journal that my mom kept for both my brother and I. She didn’t write something everyday, but she wrote the key points in our lives at the moment, and funny stories or things we said, our many doctors appointments and school meetings, things that were…
- "Life" Books, Chronic Illness, Consider This..., Family, Friends & Neighbors, GRANDparents, Jesus, Mommy, My Little, Single Parenting
What the Sprinkles!?!?!
Oh dear, aww shucks, what the heck…. We do our best to avoid those sneaky four letter words that are so rampant in culture. We quickly try to think of a substitute… That’s what happened with my mom and I when one of us just blurted out, “What the sprinkles!” We were shocked, I don’t even remember what it was about, and sprinkles were in eyesight and so that became the substitute and now is a common phrase around the house. “Potty mouth,” as it was called in the 1990s, was a no-no in our house growing up, but as I have become an adult I have found there are…
-
Grief and Grace
The wonderfully crazy little thing called life caught up with me last week, and forced me to rest. My last post, I had written about how some first times are also the last time, by God’s wonderful grace we don’t know this at the time. To be able to have the memories period, becomes a huge place of gratitude for those who experience these first but last times. I know I have written before about the very real physical side of grief, and the toll it can take on your body. Having just gone through and recovering from a really hard week of this form of grief, let me just…
- "Life" Books, Children, Chronic Illness, Consider This..., Family, Friends & Neighbors, GRANDparents
They’ve Chosen the Wrong Battle
You’re now in a secret world. You’ll see things you never imagined; ignorance, rudeness, and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle and be present in that moment. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist, but most of all, you’ll be a mom to the most wonderful child. Geraldine Renton “They have no clue who they are messing with!” I have said this over and over in the past few weeks. Medical research funding cuts were enough to…
-
When Your Lucky Underpants Don’t Work
They should gamify your medical records so that each time you have a new and exciting symptom, you unlock an achievement in MyChart. Haha! If only this was true! I recently requested all my records – it took them a while – but I eventually received a digital file of a beautiful 7,000+ pages of records. I didn’t just request them for the fun of requesting them. I wanted them to go over some of my medical history. However, the overwhelming gratitude I have for every doctor, nurse, therapist, radiologist, the list goes on- who cared for and treated me – only explodes as I read through these pages. And…
-
Did I Hear That Correct? Surely Not.
I’ll have my first granddaughter in a couple of weeks… she’s not going to be a pincushion. We’re not going to allow that to happen. United States Senator (look up the quote and see what else this senator had to say) Am I disturbed? Am I perturbed? Am I angry? Why, yes, all of the above. And no, this post is not going to be all about vaccines and medical research. However, the debates and the funding cuts continue, and when this continues I will not stay silent. I will give facts. And sometimes some first-hand experience and knowledge. I don’t know if this senator has ever experienced his own…
-
Silence, not optional
“The government rest on his shoulders. The government rest on his shoulders. The government rest on his shoulders” Isaiah 9:6. This verse is on repeat in my heart, mind, soul, and lips. I come to you a day early, because there is a senate hearing tomorrow that is most likely to be a earth shaker for me and my fellow chronic illness friends. Now, I don’t like to go political on here, but I do feel like I am responsible for just giving some important critical facts. Otherwise what have I been doing for 37 years?!? The new administration has already silenced some pretty big deal information centers, departments, people…
-
Simple Christmas
Simple: not complicated; not demanding; manageable. I can say, with a grateful heart, that my Christmas this year was simple. Simple in the ways listed above. On this side of heaven it will never be “simple” in the way of easy; painless; or absent of grief. I will always long for that first Christmas morning with my own little girl. And all the other times I will continue to grieve this side of heaven. However, her name, Lucy, was spoken. Her name was written on packages, in the “From” and “To” spots along with mine. Her ornaments were hung along with all the others. She was remembered and held close.…
-
All You had to do was Ask
“God kept me close and gave me space all at the same time: to ask the questions, to express my anger, to tell him I didn’t understand. He didn’t, and doesn’t, hold it against me or use it to manipulate me into belief. God used this horrific, awful, inexcusable thing that happened to me to replace my shallow faith with one that could, and did, persist through anything. It doesn’t mean the pain hurts less, or that my disability doesn’t still affect my life every single day. It doesn’t even mean the PTSD and the anxiety and fear come any less often. It does mean when those things come and…
