Ever heard the saying “don’t cry over spilt milk”...
Well, last night I cried over hamburger meat. Before you try to guess, no I am not pregnant. And besides, I was never a super emotional pregnant lady....I was the "nauseous over everything" type of pregnancy. And let me tell you, after five pregnancies it only got worse, joys of aging I guess.
Last night we were trying to get dinner cooked while finishing a pantry project. Note to our readers, I cope with stress by tearing out a wall or knocking out a closet and rebuilding it. In my previous life (pre-special needs/developing researcher/foundation director/wife/mother of five/two terminally ill life) I loved to build things. Every year on our wedding anniversary, Eric would get me a new tool. He was the first man in my life that didn’t shame me for “acting like the boys” and I learned I was pretty good with a skill saw.
Now, I find the tearing down and rebuilding stage of a project is very therapeutic. It allows me to go to a familiar place in my head and it is protective in a sense to turn it off for a bit. Being the mother of two children who suffer terribly daily, and can literally die any day is a heavy I can’t explain. The projects allow for release when some days/weeks we are homebound attached to oxygen and life lines. And trust me....one thing I am so grateful for is that Father is faithful and He will never leave you and His strength is a daily sustaining power.
I am also thankful for saw dust....
I started the "pantry project" weeks ago, on a week Vivian had been terrible struggling. Our house morphs into a hospital and the beeping of the O2 monitors and the sounds of seizures, coupled with a screaming child numbs you. I found myself wanting to take out the pain and the hurting on the wire shelves in my pantry. They never worked well, I hated the way things fell through, and honestly the shelving was just thrown in during the building stage. They never made sense, but I was always so tired and there is never a “good time” to tear things out so we dealt with them for almost 10 years now.
After a week of sleepless nights, hours of research trying to understand what had shifted in Vivian’s little body to bring about such cruel seizures, one day I had had enough. Vivian had started to finally shift into a settled state after we, working with our doctors, had tweaked about every known element we could. One of the moves had finally worked and something about her rest....I found my energy.
I sent the kids and Eric out to get out of the house for a bit of fresh air, I kept D and V to rest, and out came the hammers, crowbars, and trash bags. Because this has been their life since birth, surprisingly, all of my children (including Drake and Vivian) can sleep right through an oscillating saw or drill plummeting into the sheetrock. They must know how therapeutic it is for mommy and they find therapy now from it too.
Last night, as we were dry fitting shelves and hanging strips of wallpaper, the bigs had started spaghetti for us so we could get dinner going, the mess cleaned up, and all sit down to eat together as a family like we do most nights around the kitchen table.
HK was feeding the dog, and Birk had laid down with Drake and Viv to read them a story. She does this often and my heart explodes each time as such a simple thing means so much to know our bigs value and love their younger siblings to intentionally pour into them. For years now, all Drake and Vivian can do to reciprocate love is move their eyes in their direction, or lean close to let them know they are listening. Being none verbal and practically paralyzed from neck down limits their ability to even socialize with their siblings. It never stops the bigs from grabbing their arms and physically wrapping it around their own head, imitating a hug and smiling widely and proudly as if Drake or Viv had initiated it themselves. The way God teaches me love through watching my children love each other unprompted is something I hope never grows lost on me.
I stepped away from the pantry to stir the meat for the spaghetti sauce. I was close enough to where I could now see and hear Birk’s book choice she was reading to Drake. The Crippled Lamb by Author Max Lucado. As I listened and watched Drake’s eyes intimately follow every page she presented him with I felt the overwhelming sensation of tears hit my cheeks.
The story of the lamb,
being born “broken” to the world....
being left and made fun of....
believing he was broken and left by the world that deemed him worthless....
As I stood and watch my precious babies, each beautiful and so full of life...but the harsh reality that the devil wants so badly for us to believe, that two are broken and worthless to the world. That although I see this gorgeous healthy child reading to her equally gorgeous brother and sister....because they were created different.... that it is ok to disclude and shame them... because of no fault of their own, and watching them suffer horrifically daily just to survive, a far harder life than anything “healthy” had to endure to live.... the world is ok letting them only suffer until their bodies can suffer no more....
came crashing down on me....over our pot of dinner....
But Father caught me as I sobbed quietly as not to let the children see me crying...Just like the crippled little lamb....God, the Father, created Drake and Vivian for a purpose. God created them for a purpose so much bigger than I could have ever known.
I won’t spoil the book for you, read it and see what the little crippled lamb was created for. Such a precious reminder or God’s perfect timing.
My children were created to suffer until the time that God appoints for so many to know healing. That is why we continue to step forward with research and treatment for children suffering with NKH.
I can not stop their suffering..yet...God knows how much I have begged Him to remove this cup from my family....BUT I can trust Him in turning their suffering into hope.
Children, across the country, have hope because of what God is doing through the Drake Rayden Foundation and the faithful giving of so many. If you know our children, if you have walked with us these last six years...thank you. If you have supported our efforts before, we ask that you join us again. Now is the time.
Asking you to sacrificially give so my children will one day live....is extremely humbling. Please know we do not ask flippantly. Our projects are going to be aggressive in 2023 and God always tends to step us out further than even we can hope for....
But the harsh reality is that treatment will not come....
unless you join us.
Don’t just watch the difference God is creating for NKH through DRF...
Join the movement, grab a rope, and BE THE DIFFERENCE.
Follow our donate link to sign up to be a monthly lifeline partner of any amount. I am happy to help walk you through any questions you may have. Reach out to info@DrakeRaydenFoundation.com with any questions and I will personally walk with you.
No amount is too small, and your information is kept completely confidential. You could be the difference between NKH having treatment and a child not seeing their second birthday.
All you have to do is click HERE and BE THE DIFFERENCE for children living with NKH. After you read this, share it with someone that needs to hear our message. In the subject line write, "I AM THE DIFFERENCE”. When you help us share, when you give sacrificially, when you become the difference you help fight for the one. Help us fight for the one that God so preciously loves. Help us bring hope to NKH.
To God be the Glory,
Forever.
Amen.
Join today at DrakeRaydenFoundation.com/Donate . Click monthly donor and you choose the amount and where you would like your donation to go. No amount is too small. Our goal is
40 Lifeline Partners for the month of December.
Can you partner with us to help bring hope to children living with NKH?
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