As this special date in history occurs, and as Braden's half-birthday approaches, I've been reflecting quite a bit on our life. I certainly understand what it means to live the expression "No rest for the weary". You know how I was telling you taking care of a medically involved child like Braden is like having a newborn - all the time?
If you've ever had a big event you've been planning kind of take over your life, and keep your adrenaline going weeks on end, that's kind of what it can be like. When the adrenaline wears off, and you finally relax, you get sick - really sick. This is what having Braden is like, and when we finally relax, rest and let the adrenaline wear off, we usually get sick, because it just takes over your body because the adrenaline is gone. So any little sinus infection or other, once it grabs ahold of your tired body, it can completely wipe you out.
Every single day, we have a new set of worries, a new rush of adrenaline, a new evening of light or little sleep, a new period of vigilance over whatever ailment Braden faces that day. EVERY DAY. It's a life that constantly keeps us on our toes. Here's the list of things we monitor on high-alert every single day1. Seizures - are they under control? Can we stop them if he goes into status? 2. Urine Output - has he gone in 6 hours, have we tried all our "tricks" to get him to go?, will we have to take him to the ER or clinic to have him cathed? Is there a blockage in his tract, or just sediment? Do we just try pushing more fluids? 3. Comfort Level - is he comfortable? Is he having kidney pain today - is that why he's so whiney? Or is he whiney for other reasons? Will I be up with him again tonight to manage his pain and comfort him? 4. BM output - when was the last time he went, does he need mirilax or a suppository or more water in his diet today to help? 5. Body Temp - is he too warm today, having hot flashes or is he too cold now, is his heart rate dropping because he's too cool? Do we add blankets, take them away, try fans or try snuggling for body heat? 6. Drool/Snot Patrol - yeah, really. Is it clear, or has it turned colors? Do we need to give extra breathing treatments today? Call the doctor to get a sample taken because it's turning colors or getting thick? 7. Port access - will the nurse get it this time? Will we have to stick him a few times to try access? Will we have to take him to the hospital because we can't get access? Will this mean another surgery to replace the port if we can't?
These are the set of day in and day out worries that somedays feel like they will age me twice as fast. But the rewards of caring for a special child like Braden are hopefully being stored up in heaven for us. It's hard to let other worries in life seem more important most days, it's usually other people without this kind of perspective that try to drag you down into things that don't really matter. I'm thankful for the people in our life who, because of Braden, know what things in life really are important, and are forgiving on the days we may fall short when the issues of the day seem overwhelming.
Thanks for your continued prayers for all of us. Braden, Brad & Kodi