|Grandma G and Courtney|
You know the saying “when it rains, it pours”?
Well right now I am walking through a freaking tsunami and let me tell you, I feel like I am drowning, JUST when everything was looking up. You know those weeds I spoke of earlier, well they have been doused with a serious dose of Miracle Grow and are trying to choke the life out of me.
How does one keep getting up when every single time you do, something else comes along to knock you down and make you think twice about getting back up again?
I am tired of always feeling like no matter what I do the hits keep coming and I am getting creamed in the process. The idea of trusting God for every single breath, every single need is a hard concept for anyone to grasp, even when you have had as much practice as I have. Apparently I still have lessons to learn in that area, because god keeps testing me. UGH!
When I promised to be open about my life here in this space, I decided to not hold back about what it’s like to raise/care for a severely disabled/medically fragile child. The ups and the downs.
There is great joy in this journey. I have learned to love in a deeper more profound way than I could have ever imagined as a young wife and mother. I understand what it is to lay down one’s life for another, since I dedicate my daily life to caring for Miss Courtney. I have met God in the middle of the night time and time again amidst my prayers and witnessed miracles that would make you shake your head in absolute wonder.
On the other hand there are dark tunnels of sadness that wash over you at times and try to suffocate the life out of you. They take away the hope that you will ever get out from under this huge mountain of medical bills, therapy bills, special dietary needs, intense feeding schedule, wheelchair lift van repairs, specialized equipment purchases needed to care for her daily including specialized braces for her legs so she can stand and help you transfer her form place to place, etc…etc…etc…
All a parent wants is to be able to provide for their child no matter what those needs are.
We don’t have a fancy car or clothes, or a tony address. We shop at Walmart and on a good day you step it up to Target. The outlets are a total bonus. Nothing we have purchased has ever been bought at full price and I know how to negotiate like a middle easter bazaar merchant. We pay our bills on time and take care of all we have been blessed with.
Still…I feel like we are falling further and further behind. I feel like a loser who can’t get it together. Their are always choices to make. There are times of plenty when we save and in the blink of an eye it’s all gone and more taking care of Miss Courtney. I pray for discernment and wisdom over every decision and sometimes there is still no peace.
So what happened to pour vinegar on my already open wound you ask? Well it was two-fold.
First, Courtney’s wheelchair van, “Big Bertha” is having more repairs done. After looking for a used Wheelchair van that we could afford and would meet Courtney’s transportation needs vs. paying for the repairs, we have decided after much prayer and price comparison, to repair the van to the tune of $2700.
We need a new radiator (it’s cracked and leaking), brakes and rotors, a coil, upper and lower ball joints, etc…etc…etc… It’s a lot given what we have already repaired in the last nine months. BUT, it’s still cheaper than buying a new/used van right now, especially with a whole new set of in-patient hospital bills getting ready to roll in here over the next month.
We need Big Berth to run for another 15-18 months before we can safely afford a van payment.
We also found out this afternoon that Miss Courtney’s lungs have been permanently compromised by the pneumonia and we will have to do some work on strengthening her respiratory system. She will be susceptible to pneumonia’s from now on. I look at my daughter and she seems so strong and then I realize exactly how fragile she really is.
I don’t know what else to do. I know that God’s got this but I don’t know what the answer looks like. I am plumb wore out my friends. Plumb wore out. I am flat on my face before the cross wondering how we are going to get it all taken care of.
This space was not meant to be a fundraising site, yet at times it is. Its hard to come before you and ask for help. I know there will be judgement and criticism. That’s part of being human living in a fallen world I suppose. It’s OK. I am big girl. For Courtney, I’d do it all over again 25 million times over.
So many have helped our girl in the past seven years. As recently as last month, I was able to retire two long standing medical bills as well as a previous repair in Big Bertha due to the generous gift someone sent. There are no adequate words of thanks. Truly there are not.