Flashback Snapshots

Photos… home videos… recordings… handwritten notes… these things mean a lot when the people in them, who have written them, made them are with us. The magnitude of what they mean when we no longer have these people physically with us, is a heart-exploding emotion. Do you agree?

I tend to be the reflective, love of family history, love of history in general kinda girl. I’ve been told I am an old soul, and I can see that. I can find myself surrounded by black and white slides, vhs and cassette tapes, listening to George Beverly Shea. I find comfort in home videos, and I believe this is because of a rule we had in our house. Which was if you stayed home from school sick, there was no tv, the only thing you could watch were old home videos, and in some sort of way it brought the comfort needed to get better…

So I thought I give you some snapshots of my life story… for today birth to eighteen years old-ish… some you may know and some may be new…

Snapshot 1: Imagine a five year old boy, his mom and dad have just told him some amazing news. After years of thinking they would be a family of 3, they were going to be a family of 4! Only explanation was God! Let me tell you about this extraordinary 5 year old, who yes is my brother 🙂 He was given the job of coming to see if he had a sister or a brother, and then he was to go tell the waiting room. He was filled with so much excitement that he announced, “He’s so cute! She’s a girl!” He was so proud, that no one wanted to question him and ruin his excitement!

Snapshot 2: Four months old. No RSV vaccine available. RSV struck my tiny lungs. I was admitted to the hospital and, needless to say, had a long stay. Diagnosed with Severe Asthma, GERD, and so started my days of multiple nebulizer treatments, and clinic days at Duke Children’s. At the same time, my brother also was having challenges of his own, and was being seen at UNC-Chapel Hill. Let me just say, we had the most functional on the road life van, none of the travel vloggers could touch my mom’s work of art! I’m serious- it should have been a model for all medical mommas out there! And as we got older, we still had these appointments, AND my brother went to school in Greensboro, and I was in school in Burlington. And the van kept being a work of art! Carpool and all!

Snapshot 3: The doctors appointments, schools in 2 different places, you would think I would have maybe thought, “my friends families don’t seem to be like mine.” But I didn’t, and the only thing I can credit that too is that it was never made a burden, or big deal. It was what needed to be done, at that moment. We had grandparents that helped out. We made it work. We both had our one activity that we could choose- mine was dance, his was swimming, on the weekends we were Aj Race Team 🙂 We were both required to take piano (a musical instrument). We always had breakfast together, all 4 of us. And most nights there was something tasty in the good ole’ crockpot! And we always said “Watch over Thy Child” and goodnights together. When we had free time at home, you could find me with dolls, or dancing. You would find my brother with his race track made of plywood, covering the pool table, and the smell of white out and sharpies because there had been a major pileup, and repairs were underway! And every once in a while, we would get lost in the music and he would become the dj 🙂 It’s what I knew and I loved it. I loved every part of my “childhood.”

Snapshot 4: School was becoming a struggle. Fourth grade, homework took hours, I was lucky if I was able to complete it all. I was loosing my love of learning. And it was my turn to be tested and get assessments. By mid-fifth grade we had the results, the biggest struggle was comprehension learning disability, which hits every part of life, but especially every subject in school! I choose to see that we have a God who sees creation to eternity, and He makes no mistakes. And it is no mistake that my brother and I are siblings! Our challenges don’t look the same, our “action care plan” was not the same. We DID have the same support, the same home, the same sense of what TRULY matters when it’s all said and done, and that is JESUS! We were there for each other, sat in the silence of struggle and challenge, got frustrated, and let each other know what we thought. We had a comedy tour of inside jokes, about the world, stories that we knew no one would believe. We had lots of clinic visits together, and we had a lot of laughter too!!

Snapshot 5: Middle School, my goal was to pass! I had started getting migraines around fourth grade, and they had just gotten progressively worse. With not a lot of research on migraines in kids, CT scans showed nothing, so that’s where it stopped. My brother was finishing up high school, and this was a hard transition, letting go of my best friend, not seeing him everyday. Dance was over for me too, my ballet instructor had left the studio, and the goal of the new instructor was for us to be pros. That was not my desire. So school, piano, tutoring. I really didn’t have time for anything else because of homework. The school I was at only went through eighth grade, and parents had different thoughts on when their children should transition to a new school. Some said after fifth grade, or after seventh, or after eighth. Which meant friends left every year. By eighth grade, my parents and I needed to figure out high school, how my testing recommendations were written, in public schools I wouldn’t have any services. We investigated other private schools, but I didn’t meet the qualifications for services. So we landed on our only option, Homeschool. Something my mom and I never thought! Although we are best buddies, we were kinda scared! We survived and thrived! I regained my love of learning x 100! And most days I got my work done by 12:00 and had the rest of the day! One of the blessings of our household conversations, was that college wasn’t the “end goal” that was constantly talked about in other homes. My brother would have loved to have swam somewhere, but health sidelined him, and instead he got to be “Mr. AJ, who taught me to swim,” to a bunch of kids who will remember him forever. I learned work ethic, respect, consideration, a job well done and complete, are much more valuable that a degree on a wall. Homeschool allowed for an abundance of opportunities to find what makes my heart come alive! Babysitting: families, small group, childcare at churches: for study groups, special services, weddings, MOPS, Nannying, and I absolutely LOVED it!! This was and is my college! I learn every day and love to dig, research, and discover everyday!

Snapshot 6: School definitely was lighter and my love for learning was renewed, but, my health was about to hit me with full round in the ringer. In 2005, I went to one of my specialists, who loves Jesus, she took one look at me and she said, “you don’t look good.” To which I replied, “I don’t feel good at all.” She said, “we need to do a big blood draw. You are way too pale, and something isn’t right!” The results came back, my ferritin was 2 (normal 10-120) and Hemoglobin was 8.9 (normal 12-16). I was anemic for sure, but as many interns, residents, doctors, nurses, have so kindly pointed out, I was close to dead- or should’ve been dead with ferritin that low. Which I remember feeling pretty out of it that day in her office. These results led to diagnosis of Platelet Storage Pool Defect (basically my body doesn’t store platelets, it only keeps enough to keep my body going- so “backup platelets” for clotting do not exist. Any surgery requires me to receive platelets at least 24 hours prior) and Von Willebrand Type 1. So this landed me in Hematology, where I learned I could no longer take Ibuprofen. Which then led me to Neurology, because my migraines were excruciating and effecting everything. Then 2006 came with its own medical crazies, kidney stones! I was told a shot of lemon juice once a day will do. But they kept coming. It was time for a second opinion, urologist specializes in kidney stones. Lemon juice- sheesh, I would have to drink all the lemon juice in the world to flush these two kidneys! I have two kidneys that can only be managed by medication and fluids galore. And absolutely no blasting stones, because of blood disorder.

Final Snapshot for this post: I often get a very strange look when I make this following statement, “Childhood Chronic Illness is a blessing. You never know any different. So your ‘childhood’ is what you and the others around you make it. My childhood was amazing! I thought that everything I did other kids did too!” This is the absolute truth. Some may say I missed out on childhood, but how do you miss out on something you have no clue you’re missing? Of course I realized as I grew older others had a different “reality” but that didn’t mean my “reality” made me miss out on childhood. As far as I am concerned, I am not a victim of Chronic Illness, I indeed have multiple chronic daily diagnosis, but at the end of the day and beginning of the day, I am HIS, and I choose to LIVE IN THE INDEED!