Some days I feel sad. Really. really. sad. Sad that I can’t make everything better for Colbie. Sad that nobody can YET. Sad to keep hearing “we just don’t know much about this rare, awful disease.” Sad because of the unknown and the horrible possibilities that come along with this KIF1A (KAND) diagnosis and sad because I see this disorder robbing her of things already. Colbie is 19 1/2 months now and our girl wants to GO. She wants to explore like any other toddler. She wants to tell us more than she can and do more than she is able and some days, this struggle for her just breaks my heart.
On these days, when I am not as strong, when she trembles more than usual or is extra “bobbly,” when her teeth grind together audibly, when she reaches and misses, falls again, when we are heading to yet another doctors appointment, when she’s super tired from the extra efforts, when she gets frustrated or is feeling bad and can’t tell us why, when she is drenched in sweat in her sleep, or squeezing her thighs or pulling at her face with her hands in a way that should hurt, but she doesn’t seem to feel it, when she gags on the food she isn’t chewing correctly, or making sensory movements that lead us to wonder “could that be a seizure?”, or when her legs tighten and I fear it’s an early sign of spasticity, I worry. I don’t care about milestones, I just care about how she feels and may feel one day, both physically and emotionally.
Other days, I feel guilty for having felt sad because I look at her and see one of the most PERFECT babies God ever made. I know how much worse things could be too. I see her big smiles, feel her sweet hugs, and hear her say her version of yes (“ess”) and I can’t help but feel happy and think about how truly blessed we are to have this amazing girl in our lives. I am thankful that she is doing as well as she is. Some days, most even, I live in a place of faith and hope and believe that everything will be just fine for our girl. I pray hard for this every day.
I know these highs and lows may follow us always and I know this new norm of appointments 3-5 times a week is here to stay. I will take her to 100 a week if that’s what it takes to help her fight this, but I won’t lie, it is getting hard to keep up with it all and I hope that I am giving enough to the other kids still too. I’m so thankful for those who have given me understanding, the space to breathe, to cry and to work through these feelings without judgement or pressure. To let them in, but also kick them out (the feelings not the people, but maybe them too sometimes, ha.) I know excessive worrying can be bad, but I suppose SOME worry is also what helps us to catch things early too. I have to allow myself to admit that I haven’t figured out how to turn that off yet, and may never, but I do know that although I may breakdown crying and that sadness may wash over me from time to time, that I will still stay strong for her, for our family and I will never forget how amazing she is regardless of this diagnosis. It will never define her for me.
Other days, I feel guilty for having felt sad because I look at her and see one of the most PERFECT babies God ever made.Tweet
6 thoughts on “Highs and Lows”
Your strength and the amazing courage & strength of Colbie is beyond inspiring. Words can’t do justice to describe your level of dedication and her resilience. I hear your exhaustion, love, & hope; I’m here for you & love you all. Praying daily.
You and your family are amazing! I will pray for new research and answers for Colby.
Praying for you daily.
My heart hurts to see this precious baby not be able to stand when she works so hard. I pray for a miracle for Colby. She is a little doll and I am so sure a very loved little girl.
I used to work with Byron in Milledgeville.
glad to have found your site and praying for your sweet family. I see a lot of Colbie in my grand daughter (no diagnosis). Thanks for the work you do to document. It is a great resource to other families. ❤
Thank you for your kind message and sorry for just now seeing this! I hope you find the answers she needs.