It has been a year since Jackson’s battle with Severe Involuntary Breath Holder Spells with Epilepsy began. Time has passed quickly, yet there are days when I still feel suspended in time. This year has been hard on our family but we are still moving forward.
It’s hard for me to believe that a year has passed since this journey began for us. I can tell you that each time you find out your child has some disorder, it sucker punches you deep in the gut. Having multiple children with health issues doesn’t make it easier and you genuinely hope with each child that they will be healthy and “normal” like children should be.
We are finally at a point in our lives where we are able to breath again and are finding balance. Jackson’s last medicine increase has his breath holding spells controlled for the most part and seizures have decreased with the decrease of IBHS episodes. I could not be more thankful for this reprieve no matter how short it may be.
When you have children with disabling health issues, it becomes hard to function and plan your day to day activities because you do not know what to expect or even how to plan since you cannot guess when a seizure or spell will happen to them. Events get cancelled, schoolwork is put off, living becomes second to surviving. This has been our life for the last year.
At this stage, I’ve learned that seasons are short and each quiet period must be packed with catching up on the things we’ve had to put off. Housekeeping is done in these time periods, restoring balance to the home so that we are ready for the next unsteady path. Schoolwork is also done during these times so that when needed breaks come we do not fall behind. Life and living come first for a while and surviving does become second even for a brief time.
After living this year surviving, we are ready to live life again and move forward, hoping the days remain balanced and settled for a while. Whatever happens, I will take what I can get and enjoy these moments while we have them for they are gone all too quickly.