Outreach Brings Comfort to Family
“Daddy – Daddy – I’m special! – look I’m special!” Those were the words my seven year old daughter shouted to her Dad as she showed him the new bracelet she was wearing courtesy of her Guideposts Comfort Kit. Both my husband and I choked back a tear as he said “yes honey you are”.
My daughter had been through a rough year of medical issues beginning with Lyme’s disease. She began antibiotic treatment within days of the tick bite, but she never seemed to get better. She would have good days and bad days. I remember the nights I had to rock her in a chair just to bring her some comfort from what seemed to be never ending stomach pain. What we came to discover was that she actually suffered from Celiac Disease which was causing her stomach pain and also keeping her body from functioning properly. This discovery came after months of treatment for Lyme’s. We were lucky to find the Celiac when we did.
The only true diagnosis for Celiac is an upper endoscopy. So at age 6, I brought her to the hospital for a routine endoscopy. She didn’t flinch when they inserted the IV. She was so used to having her blood drawn by this point that it was old hat. When they began the IV drip she immediately said it hurt and the anesthesiologist realized the needle was not inserted correctly and so the mad dash to switch arms – insert another line in her other tiny arm - the IV drip began and so did her tears. My heart broke with each of her tears. I couldn’t put her in my lap – I couldn’t rock her in a chair – I just had to wait until they sedated her so I could leave the room and wait.
I left the room, not knowing what to do to pass the short time she would be undergoing the procedure. I found the gift shop and decided to get her a gift to let her know how brave I thought she was – how special she is. There wasn’t much that peaked my interest and time was of the essence so I settled on a stuffed lion. I gave it to her as she woke up and told her I was so proud of her and that she was so very brave. She was happy with her lion and I think it reinforced for her that she is special and brave.
Fast forward almost a year. She had been eating a gluten free diet for several months now and complained very little. She always rationalized the times she felt sorry for herself by saying – its okay Mommy – its only food – I can still play with all my toys. I admired her strength and gave thanks to God for giving her the strength and spirit she was blessed with. Once she was on a gluten free diet and her body was functioning properly again we were once again able to treat the Lyme’s disease.
She was still suffering from a multitude of symptoms that were not alleviated from antibiotics for the Lyme’s and we came to learn that she had an additional tick borne disease - Bartonella. We were preparing to see her specialist when I told her she was probably going to need to have blood drawn. Well that seemed to be the straw that broke her little spirit. She was done – she was done with needles – done with foregoing cupcakes at birthday parties and pizza at school on Fridays. I had no idea how to help her regain her spirit.
That’s when I approached Rhonda for a Comfort Kit. I hadn’t thought of it before because she was always so strong. Perhaps she was strong for me and her father.
When I brought home the kit, we opened it together and she began to interact with each part of the kit - running to the kitchen to show her Dad her bracelet, giving me a sticker and hugging Sparkle.
Later, when the initial excitement quieted she took out the journal. She began to color and write in it. What I came to realize is that the lion I gave her in the hospital was a recognition of being brave – this kit – the journal – was a tool to help her find her voice and truly know she is special. The time we spent with her journal gave me the opportunity to hear from her what she was worried about – what her fears were and her prayers. It gave her a way to find her spirit.
Sparkle came with us along with the kit, its entire contents – and some gluten free snacks – to the specialist the next day. When he began his exam he noticed her bracelet and asked about it. She proudly held it up and said “I’m special.”