spe•cial
Pronunciation: ’spe-sh&l
Etymology: Middle English, from Old French or Latin; Old French especial, from Latin specialis individual, particular, from species species readily distinguishable from others of the same category : UNIQUE

I hear the word “special” frequently in the day to day care of Gage and Quinn. They’re special needs kids. It’s a label. We can’t deny it. We’d prefer they weren’t labeled, but it does get the point across to people quickly.

In some medical circles we’ve been referred to as “the special Atlanta family” or “the special kids with OMA AND ARPKD” because of the kidney problems – and the probable hybrid kidney disease (with the vision disorder thrown in for fun) the kids have. Turns out, the kids’ condition could be so special, they don’t even have a name for the syndrome they probably have.

Then there’s special education, needed for their special needs. We’ve gone through the process of the county’s evaluation system for public education because Gage is entering Kindergarten. He needs a lot of help. A Special Education Teacher each day, to help him in the classroom to assist him with his deficiencies and his vision disorder. Plus OT and Speech a few times a week. His Special Education IEP (Individualized Education Plan) is in order, and the person in charge of Special Education has it already. We’re thrilled to have found what we think will be a warm and welcoming place for the kids and their special needs. We think it’s a special place.

I’ve dealt with the fact that the kids are special needs kids a long time ago. Every once in a while something might make me a bit sad about the challenges they face. Most recently, a couple of friends have had new babies, and I have a twinge of jealousy. Not that they have a healthy child. But that I won’t ever have the blissful ignorance of my healthy child in my arms again. I long to remember it felt like, before any diagnosis or therapy or treatment, but I just can’t.

Gage and Quinn are special, no doubt. And sure, it’d be my preference for them not to have developmental challenges or face life threatening surgeries due to a chronic illness. But understand this: if my only option was to have these kids with these special needs, well then, no question, it’s my special privilege to raise them.

Tell me how I explain to a 5 year old that he will have blood taken every week for a month or more.

Even Dr. Wonderful can’t help with that. She’s prescribed two new drugs to assist Gage’s body with the concentration of his urine. And his renal numbers need to be checked. One of the drugs can cause his Creatinine and BUN numbers to rise (not a good thing) so they must be watched closely. In fact, Friday, the day after the day in Bama, he will be stuck again to have baseline labs in town for Dr. Wonderful to work from.

Dr. Wonderful knows how difficult it has been for us with Gage and The Urine Factor. So, compassionately, she wants to help us help Gage. She wants to balance quality of life (ours and Gage’s) with the risk of letting those numbers rise a bit. So we enter the balancing act. I suppose if it were any other doctor I might be freaking out. But I’m not. I’m okay. I trust her. She asked me if I was okay with the risk…and I said: ”well…I’m okay if you are.”

Gage was a delight to be with today – even if it involved needles and a trip to a UAB Children’s Hospital. I brought a new sticker book, a book of maze’s for him to complete with crayons (don’t ask me how his vision disorder doesn’t effect him doing those, but he’s great at them), snacks, new kid CDs, Sally (the Ugly Orange Kitty), and his blanket and pillow. We could have been going on a big adventure anywhere talking about the highway construction, big trucks, how fast to drive, buildings, trees and finding potty’s quickly. But we weren’t. We were on a medical trip with implications.

And on the return trip I had a couple of hours to think as he slept with a shirt over his eyes to block out the light. I thought, what a sweet boy – innocent but not, all at the same time. As a parent it makes me sad that the reality of his world runs between that of a normal 5 year old and doctor visits, therapy, medical monitoring and drugs.

So, at the lab when Gage says “no neeedddles Mommy” with tears in his eyes, I don’t know how to explain to him in a different way than I have, in part, several times.“I know, I know…if I could take away the needles I would honey, but we need to do it to keep your body safe.” I know it’s my reality to help him cope, but I have to be honest, it still breaks my heart every time I have to utter the words.

Julia

The reality is actually that we would not have completed or survived the move had it not been for some friends (and family too!). We needed you. You guys came through for us. Again.

Since the house is still on the market we’d not done any recent packing because we didn’t want boxes everywhere so we had a lot to pack last week. Then, for all of the weeks for this to happen – Gage had a little trip to the ER in the middle of the night for a bout of dehydration treated with IV fluids. So that didn’t help.

I have to thank LR, who, for several nights in a row last week, came to help me pack when I just couldn’t get my head mentally around it. She packed the entire kitchen. And our friends SW, KG and SC helped pack and unpack and shuffle last minutes things from the old house to the new one. And by 8:30 on moving day, the kids were in bed, having taken a bath, rooms unpacked. And happy. It would have been much more traumatic on them (and us) if our friends weren’t here making sure their stuffed animals were neatly lined up in their beds. T and Julian spent two days making three trips of just boxes in a U-haul…like 100 boxes. And lamps. And artwork. And I can’t forget A & M who watched the kids for the better part of the day…taking them to a parade and feeding them lunch. When picking Gage up he ran to me to say “Mommy, can I come back here some day?” Grandma and Grandpa and Auntie pitched in for the afternoon…as always when we’re in a pinch. (and come see the tile backsplash that KG help me put in!)

As it turns out, we’re always surprised with joy over the kindness ALL of our friends and family bestow on us. I think you’d help us anyway, but I know that you know that we’re just overwhelmed with our lives sometimes with the care of Gage and Quinn and running our own business. I like to think that you all were placed in our lives because God knew what we would face with Gage and Quinn’s challenges. And that you would help us understand God’s grace and love with your willingness to help us. I don’t think you know just how much you are a part of the reason we have faith. You carried us and continue to just when we need you to in a way that always catches us off guard. And we thank you.

I am headed to Bama with Gage to see Dr. Wonderful on Thursday, the 8th. We’ll be discussing the lack of concentration in his urine and how we can help him with medication. In addition, she’ll do labs, so we’ll talk about his anemia and iron levels and if there are any new concerns due to that blood work. Poor Gage, bruises just leaving his arm from his ER visit last week, only to have more needles this week. Makes me sad to think of this reality for him. But I can’t get into that now. I have boxes to unpack.

Julia