worry – Kelsey's Kaleidoscope

Just Like That

Just like that, you cannot help but bring fear forward. It starts with a limp, continues to an evening pain that must be fierce for it wakes a sleeping Kelsey with sensations strong enough for tears. Concern, fear, and worry consume your weekend. Though all “appears” well on the surface, the doubt connects you with doctors out of necessity. Blood work is ordered with urgency. Life turns upside down again in your home. You also know it could be worse and pray it remains merely a concern.

Then, just like that, you are taken back to a painful trail of memories.

You check in at the lab; a very routine practice. There is no concern or fear for Kelsey because unlike the horror of a weekly injection, lab work is less often and for some reason, less concerning or worrisome to Kelsey. The brave and strong girl has no presentation of worry.

Another young man (baby by the sound) does not feel the same way.

He screams in pain for twenty minutes. All the while, the staff does their best to calm him down and the mother does her best to do the same.

Nothing works.

We sit in silence and I cannot help but drift back in memory to painful times when that scream was the norm and that pain was hers. Tears stream and I would like to go back and offer that mom a hug. Kelsey wonders the worry that brought that parent and child in today. I do, too.

The doors are closed and no one else is the room. We hold hands, and I pray for that little screaming voice inside and our own silent voices.

Twenty minutes later, “it’s over” is calmly stated by the staff. The mom took five more minutes to calm her child down. As they walked out of the office, distraught, I offered her a warm glance.

It’s now my child’s turn and though she does not scream externally anymore, we’ve had enough of those moments in the past to know how worried she is inside. I put on my best face and smile to offer her comfort and calm. Her determined face keeps me going, though I cannot escape the pain felt through confidence instead of crying this time.

We hope, we pray, and we await results hoping we worry a little less when we do.

Toothpaste

When rain turns to snow and your husband leaves an hour earlier than usual for work, the day starts off interestingly.

The dog wants no parts of a walk nor do you have an umbrella handy. You want to make the best of the morning.

You sing a few of your favorite songs with your kids over breakfast and you talk about what fun awaits them today.

You worry about a cough Kelsey has developed. You do not like the way her eyes look. You don’t want to say aloud the worry you have every day, but feel acutely today.

You all head upstairs to brush your teeth when fighting ensues in the bathroom. They are concerned about toothpaste. They are mad about the duration of each other’s brushing.

When you question your son about the rationale for being upset, he says it is because Kelsey is not brushing her teeth long enough. I always tell the kids how important dental health is to overall health, and we have been working very hard to help Kelsey care for her teeth independently.

Perhaps it is more than that, though, and perhaps that acute worry of yours is coming off in a way you cannot realize.

You hug your son and thank him for his concern. You hug your daughter and pray the day goes well.

You hope the weight of the worry will not stick like the snow causing uncertain travels on the roads ahead.

Ticks

Brad Paisley sings a song I’ve always enjoyed with a line that states, “I’d like to check you for ticks.”

Brad, though I know you will not read this, I will never hear that song the same way again.

This weekend, I saw two of those little buggers up close and personal. If you have pets, you may have had the pleasure of seeing them before. However, when I saw one in the center of my daughter’s belly, it sent me into a tailspin. It was a calm and internal tailspin to keep her calm and comfortable.

Those little creatures are odd, eerie, and exactly what you have read about or heard about in a Public Service announcement. Somehow, through a barrier of spray, one tick made its way up to Kelsey’s belly and one found its way onto Brendan’s.

I know that I am not calm about most issues regarding Kelsey though I make a conscience effort. This one made me frantic inside. We removed our new-found friends with tweezers and saved them (just in case). We doused the locations with alcohol and read about ticks on google for the rest of that evening.

We alert the docs, pray, and try to stay calm for ourselves and for our kids.

As always, we pray, remember to breathe, and hope for the best day in and day out.

Brad, I have no interest in checking for ticks again.

Brown Bear, Brown Bear

Brown bear, brown bear, what do you see?

I see an IV staring at me…

Wait. That’s not right. Nor is is a stretch from the truth. Wednesday, October 19 was supposed to be “Brown” day in Kindergarten for Kelsey, full of activities from the beloved story Brown Bear, Brown Bear, What Do You See? by Eric Carle.

Instead, Kelsey was admitted to a Children’s Hospital. She was devastated. Whether it was the book itself or the reality that life was not going according to Kindergarten plan, Kelsey was beside herself about missing the day. A Child Life member was kind enough to make sure Kelsey had a Brown Bear to hug during her stay, but even his warmth could not completely wash the tears or the worry away from her eyes. Worry and fear are not the faces a five year old should wear.

Earlier that day, Kelsey was in school, hiding her pain and inner torment. Her will is too strong to admit Kindergarten defeat. She said not a word and quietly made it through the day.

When I saw her walk out the door wearing a wool sweater on a day that was 86 degrees warm, I could not help but crumble inside. It was the inability to walk, feverish warmth, and the prevalence of deep purple and red lesions all over her legs that led us into the Emergency Room for a second time in two days. Unsettled and uneasy is how we felt with the urgency and abundance of testing that was completed in just a few hours time.

Overnight, Kelsey underwent countless scans and even a biopsy to discover the reasons behind her body’s attack. By 3AM, we were void of emotion and fuel in our tanks. We collapsed for a few hours as best as we could manage through the vital checks and check ins.

Kelsey awoke the next morning more energetic than she was the evening before, but she was quite cranky and very irritable. Can you blame her? Between the new piece of her body taken out for study and the evening spent without dinner or proper sleep, she had the right to feel any way that she wanted. While I fully supported the crankiness, I just wanted to take the pain away.

My poor, fragile little girl is also incidentally my beacon of strength.

I have been forcing myself to eat and stay strong through it all. If I am being honest, a new type of distress has recently set in as a result of the unknown and the many unanswered questions this episode raised.

Seeing Brown Bear staring at the IV and watching a five year old girl utterly crippled with pain made my family’s quest for answers even stronger.

We pray for strength, we pray for a cure, and we pray for answers, yet again.

We can not do it alone. Please join us in these prayers.

Please join us on November 25 for a night of hope to help us get one step closer to a cure. Please click on the link to purchase tickets if you have not already done so. We will be raffling a signed jersey from a Chicago Cub playing in the World Series right now, Rodan & Fields products, restaurant gift cards, Tide Water Aquatic Swim School Lessons, Photography sessions, Mary Kay products, a Pandora bracelet and gift card, and many more.

img_4518-1