For you caregivers out there of individuals with special needs, this one is for you. This life we have been given is not easy, and in many ways is blessed. But some days it just doesn't feel that way. Sometimes life can just feel plain unfair. And few and far between, every few years, I have a meltdown. My latest meltdown happened right in the middle of our family trip to Kansas and Missouri. Anyone caring for a medically fragile, technology-dependent individual knows that going ANYWHERE is no picnic and an extreme amount of stress, anxiety and pressure. Our family trips are now relegated to traveling once a year or less because anything more is hard on Braden, and the summer months provide weather that is far easier for him to tolerate than the cold we get in the Central Midwest.
If you are a caregiver, you have day in and day out stresses, and frankly, we cannot afford to have meltdowns all the time. So every few years, things start building up, bubbling up to just under the surface, until finally - it's just all too much, and the meltdown comes. You can't control it, you can't stop it - those tears just need to get out and there is nothing you can do about it except let it happen.
For those who are not the caregiver, and you haven't followed this blog before, there are things that we carry around with us emotionally all the time, that thankfully is not the burden for most people. We are in constant battle mode....
Battling keeping our child/loved one healthy and alive
Battling keeping their machines in working order because they keep them alive
Battling your own mind to keep everything properly organized, collected, cleaned, serviced, and available for your loved one
Battling to get the right medications, at the right time, at the right price
Battling the insurance company to pay their share of what your coverage is supposed to cover
Battling the providers to charge the right amount and not overcharge and collect monies you don't owe them
Battling the collection agencies because you have been sent to collections over charges your insurance company owes, not you
Battling doctors to juggle the appropriate health plan that takes the big picture into account
Battling doctors to find answers instead of just calling this one "a mystery" and not finding a root cause
Battling agencies to provide the right workers and appropriate hours of coverage for respite care
Battling our government to not cut off the funding you get for your loved one
Battling to keep your own emotions in check because you are dealing with your own cycles of recurrent grief caring for your loved one
Battling to keep your home life and work life equally organized when sometimes these issues can be all-consuming
Battling with your partner because you don't agree on a plan of care, or how to handle the extraordinary finances
Battling to keep your marriage healthy because all of this can be a tremendous stress on the relationship
Battling to get out of bed every day, because... did you read all of the above?
Recently my work has handed me some additional curve balls to deal with, and my former perfectionist and high performing self was having a hard time dealing with some things that were just out of my control - like, the weather. So my stress level went up (I started getting canker sores due to the influx of pressure and stress I was feeling overall). I had been battling tonsillitis and bronchitis for over a month, which required two rounds of medications to get it knocked out - I hate being sick!! I have three pending dental procedures/surgery and my face has now been swollen for about four months now. I had a lot on my plate at work, and normally I am packed for a road trip a week out - because with Braden, there is just so much to remember. Well... for the first time ever, we weren't fully packed THE DAY we were leaving... and we went to load the gate on the back and the wheelchair and big case were two inches too long to fit! So we had to deconstruct the wheelchair to make it work, and left a few hours late. I had planned on getting 5 hours of sleep to make the overnight 15 hour first leg of our trip, but I only got 3. I was hoping my husband and kids would get the rest they needed while I drove. Let's just say, it didn't go all as planned, and hubs had to deal with the kids more than anticipated. Meanwhile, these canker sores were getting worse. I was waking up daily with lips so swollen I look like Lisa Rinna or any other Housewife of Orange County - it hurt to smile, talk, and especially eat or drink. Day 2 of our trip, we got out to visit a family member, and had to stop three times on the way to our destination across town to suction Braden to clear his airway, because he wasn't keeping his oxygen levels up. Did I mention it was pouring rain, and we had no cover, and I had to dig out one of the machines to stabilize him? When we finally arrived at our destination, I couldn't plug any of Braden's six machines in because this older home had only 2-prong outlets and everything I needed to plug in was a 3-prong (including the power strip). (And keep in mind all of the above "battles" going 10 years strong)
{INSERT UNEXPECTED MOMMY MELT-DOWN HERE. TEARS. PERPLEXED HUSBAND. HUSBAND COACHES ME TO BREATHE. HUSBAND LOCATES 2-PRONG TO 3-PRONG ADAPTER}
Let's take it back down to DEFCON 4 or 5. Breathe.
Sometimes I just allow myself to have a bad day for the whole day and be weepy whenever necessary. Given we see the family once a year or less, I was allowed about 45 seconds of a melt-down before having to pull myself together again to greet family members arriving along with us. You need to know that it is OK to have a meltdown. We just can't stay in that mode for too long, we have too much to be responsible for.
After my meltdown, I was able to regroup a little and I finally got my dentist to agree to send me in a script for steroids. I had unsuccessfully tried over eight different home and over the counter remedies for the canker sores that weren't working - I needed something to relieve my daily misery! By day three they finally started clearing away after about 15 days of pain, and my attitude got a whole lot better too. I was able to enjoy the rest of our trip to see family - some I hadn't seen in over 10 years at an extended family reunion.
HERE IS THE BOMBSHELL SECRET I WILL SHARE WITH YOU:
I have a confession to make. Moms and dads of medically fragile-technology dependent children, those who constantly have to be plugged into a wall... those who can only dream of a day where there is no tethering to machines and electricity... I am talking to you right now. I am sharing openly so you know YOU ARE NOT ALONE. Here it goes...
Every summer, I go through a small bout of depression because we don't have the life everyone else has. We live in the South, so to see ALL of my friends, even those with less medically fragile individuals with special needs take off to their fabulous beach vacations, and I have a little pity party for myself. I get a little depressed. MY CHILD has to be attached to a wall - he is vent dependent, attached to SIX machines during the day, and leaving the confines of his room is not practical, nor safe. (We don't even keep "regular" doctor's check-ups because it's too hard and too much for him).
I'm a little sad to watch EVERYONE go on beach vacations, find some R&R, and come back with tans, pictures, new memories and a refreshed spirit. These are the times I don't feel so "blessed", because that R&R is super rare, and often not experienced as a couple or family. We don't get to all sit outside and enjoy the fireworks, we don't get to go to the beach or pool as a family, we don't get to go to the movies or go out to eat when visiting family, because someone is caring for Braden during that time - and that falls to Brad or myself.
I'm not asking you to feel sorry for me, it's the last thing I want. My purpose in baring my soul here is two-fold:
1. To let other caregivers know that the meltdown is OK, it's healthy, and I GET YOU... you are not alone.
2. To let those who are blessed with a different kind of life to take inventory of those little things you probably take for granted... those things I wrote about above... that you get to experience every part of a vacation or time with family or regular life in any manner you wish without limitations.
I hope you don't waste any time making beautiful summer memories with your family - whatever that may look like for you. Life is fleeting, and our time here is limited. Don't let the petty stuff in life keep you from your joy, or from relishing the small things. My prayer and wish for you is to find gratitude for the life you have been given, that you find the blessings in your own journey, that you learn a new way of thinking that allows you to not take the small things for granted, and that you take time to enjoy the ride. When my pity party and meltdowns are over, I can see how my blessings overflow, and I am equipped to deal with my life, even when it seems unfair.
I slowed down the day after our trip and allowed myself to go spend time on an outing with other special needs moms making a painting. While the timing wasn't ideal just coming off the road, my soul sure needed the refreshing from others who understand my little melt-down and pity-party. They gave me encouragement and love - just what I need to keep me going. It's a small thing, but a little "me time" is necessary to renew my strength to keep going to fight those battles. I hope you find your little "happy" too, even when it may not look like everyone else's.
Blessings and love,
Kodi, Brad, Braden & Laila
