Eric and I knew raising multiple children were going to be eventful. Raising five children, two with terminal diagnosis, is on a different level of stamina, but we are ever so grateful for God's endurance through every twist and turn.
This past weekend we ended up back at the hospital, this time with Drake, and into emergency surgery Sunday morning.
Our week leading up was pretty uneventful. Baseball games, therapies, homeschool, work. Everything was well and honestly nothing out of the normal.
Thursday, Drake and Vivian had their normal PT sessions at home. They do PT twice a week, and speech/feeding in home with their amazing specialist that have cared for them for years now.
We noticed that Drake was a hint more fussy on Thursday afternoon. Sometimes due to Drake's extreme scoliosis, voiding can be uncomfortable. We assist and help him to stay comfortable when needed and he seemed very comfortable after he had a good movement.
Friday we noticed a bit more fussing, but again nothing major. We have an amazing aide that comes to the house to help us care for Drake and Vivian on Thursday/Fridays. She is a Jesus loving, recent Clemson graduate, going for PA school soon, and is literally a God send for all she does and how she cares for them.
Other than some increased agitation, Drake was very happy and calm throughout the days.
Saturday when Eric went to get him up for his normal morning routine of bathing, getting his suit on, and morning food and meds, Eric mentioned Drake's knee was super uncomfortable when Eric moved it.
Drake wears a suit our orthotist and PT created for him that allows for a lot of flexibility and solid support to assist in his scoliosis care. The kids always say Drake and Vivian look like super heroes when they have on their suits. Suit or not, to us, they will always will be real life super heroes here in our home.
Saturday afternoon Eric and I called our PT to come look at his knee to have a second opinion. She came and we all agreed that having it xrayed was best just to be on the safe side.
His knee had no bruising, no redness, no cuts or visible blood marks on the skin. There had been no injuries that made us concerned and overall, he had had a pretty uneventful few days with his seizures. It did have some mild swelling behind the knee and was hot around that area to touch.
Eric loaded him up and took him to our local ER, as I stayed with Vivian and the bigs. Eric explained the events leading up to the visit. A physical exam was done, and xrays were ordered. As we waited on the xrays, the team looking at Drake mentioned they thougtht it might be a bad sprain but nothing too major.
Xrays resulted and to all of our surprise, poor bub had a break in the femur down towards his knee.
The orthopedic doctor explained that Drake's bones had signs of not mineralizing like kids his age. Which coupled with the metabolic complications and him not weight bearing, this was very common.
When a child plays, jumps, runs, all of this pressure stresses the bones and causes the mineralization and hardening of the bone. Drake being fully dependent for care, and his spinal injury two years ago, leaves most of his movement in his lower limbs to outside sources. His precious little body is more brittle, which is just heartbreaking for this Mama.
I am not sure how the toughest humans I have ever known and loved can live in the most sick, brittle bodies.
Just shows how you can't break the spirit of a fighter.
Bones may break, bodies may be sick....
But our hope and faith is in the Lord and He will never fail.
After all the labs were drawn ruling out infection. And all the specialist consulted, the decision was made to admit Drake for the night and prep him first thing for surgery. They stabilized his leg with a soft cast, and gave some pain medicines.
Once we realized this was going to be a more extensive stay, I got on the phone and started calling in the team of support. I am so, so very grateful for our village.
Truly could not do any of this without each of you.
We readied all the meds and foods to care for Vivian here, and I packed up everything Drake needed for the next 24 hours, and off to the hospital I went to be with Eric and Drake.
Hospitals are hard enough during the day, but the night can be even more taxing as there is no rest. Being tired on top of all the people in and out of your room just adds another layer. Eric and I always try to do the nights together as much as possible to help lighten the burden on each other, and give Drake the best advocacy possible.
We stayed in the ER until a room was ready around 2 am.
4 am is when the ultrasound team found a vein to start fulids,
and 6 am the doctors started rounding to talk of steps forward.
We walked him down to pre-op around 8:50 am.
We met and discussed with the team all the knowns, unknowns, what meds he can and cannot safely have, and the procedure to stabilize the bone back in place.
Drake had two pins inserted to stabilize the bone. A hard cast up to his upper thigh and down to his toes, to maximize stability of the leg.
He recovered from general anesthisia with intubation very well, and we were able to stay with him all of the times, aside from the actual surgery, which was such a blessing.
After four hours of monitoring back in our room, they allowed us to take him home later Sunday afternoon.
His first night home went very well. I think he was so thankful to be home in his own space, and the bigs were so lovey and grateful to have him home again.
Our path forward is seeing the orthepedic group a week from today, removing pins around 3 weeks, and then roughly 3 weeks more of the hard cast.
They are very expectant of full healing as long as there is no complications or infections.
Monday Morning....
I couldn’t help but sit in all the feels today.
Normally I have a day to process after an event like this weekend, but Monday came and so did all the meetings and work items. The hardest part in life is you can’t hit pause to catch your breath, as much as you wish you could.
Thank God for the gift of strong coffee.
Today I was on a biweekly research zoom with our research team at Clemson. I had missed the last meeting due to Vivian’s blood transfusion, and so today I had to make it work.
The team is amazing and they are very understanding. Research has been such an interesting journey. Just like any field of work, you have teams of people that are in it for the goods and glory, and then God directs you to the people willing to get in the trench with you and push forward.
When I say the last five years God has brought us the pipe layers of research teams….I truly mean that.
We went over some final details for an IRB we were working on to allow for a collection procedure to go through final litigations. We had the last few details to work out and then launch the project.
I showed my human side today.
I was tired. If I am honest, I don’t even know if I had brushed my teeth before the meeting as we have had so many moving pieces with getting Drake cared for since being home.
I normally try to be super eager to find the missing links, dig up the correct protocols to get us over the unknown obstacles that block our paths forward, and grab the rope and wrench forward together.
Today, I was wrestling.
Back in 2019 when we brought in the different teams of legal representation to help us keep accountability in our research projects it was absolutely necessary but it came with a cost.
The cost of freedom to disclose what we were doing.
Before all the paperwork and contracts, I could openly share about everything we were doing, everything we had vision for, all the potential, and all the hope.
Also, five years of getting to sit at the round table, you see first hand all the moving pieces of research data. Sharing information before it is time can actually cause more confusion as the monthly data can shift so much even with the best control groups in place.
I felt myself wrestling with God this morning on the call as budgets and fundraising and future plans, and agendas were once again on the table of discussion.
For 7 years we have lived this heavy load.
Devastating diagnosis
End of life prognosis
No treatment
Finding treatment
Research projects,
Budgets,
Planning events
Never ending fundraising…
Paperwork, filings, more paperwork..
Weekly, bi-monthly, Monthly Meetings across the country…
Updating/not updating
because now things have to be reviewed by all parties before releasing..
Trying to share our story to help encourage others
No sleep, hard nights, seizures, hospitalizations, trying to care for all children equally all while running companies to provide for our family,
falling short, getting back up,
finding a rhythm,
Living a life in the public view
Criticism
getting blind sided,
getting back up,
pushing forward,
not quitting,
Pushing forward,
Pushing forward,
Pushing forward…..
Today as I was on the call being reminded of just how human I was from the tired reflection I saw starring back at me in the zoom camera.
I couldn’t help but wrestle with God.
God….I know all this is needed and necessary,
I know you chose our family because I can see how many times I have tried to give it back to you, and you continue to bring the people to strengthen us to keep carrying it forward.
But I am tired….
I want to go tend to my children.
I want to be “just mom” again
I want to be done….
I want to let go of this season….
I want to change course…
I want to give this to someone else….
Then…
like He always does..
I felt Him shift in my spirit.
I felt Him steady my feet.
My child…
I know you are tired, because I too knew what it was like to be tired.
My child…
I know you are heavy laden, because I too carried weight, the sins of the world to be exact.
My child…
I know you are confused about the steps forward, but be reminded, I didn’t ask you to figure it out, I asked you to be obedient to my lead.
And because you are so strong headed, although I do not create pain and suffering to humble you, I can use their pain and suffering to continue to humble you so that you do not get too ahead of my leading and chart your own course.
Remember…I know you, therefore I know what is best for you…
My child…
I know you want Drake and Vivian healed, I too love your children, they are mine before they are yours, and I created them. I never wanted children to suffer.....sin changed everything.
My child…
I know you….. because I created you for a purpose.
So… focus on the task at hand today.
Focus on my face in all of it.
Hold on to me… And I will make your paths straight.
Yes Lord, yes… forgive me for being overwhelmed and allowing my emotions to get ahead of me.
I trust you Father.
Wherever you lead me, I trust you.
Forgive me for trying to find the path myself.
Today I was reminded that I have a choice to look at this journey everyday the way God has intended it or the way the devil would have me perceive it.
Is the pit we are in a path of protection, with guards all around to protect and settle my mind as to allow for intimate time relying on Father’s faithful provision for our daily needs, and to be strengthened by my weakness without His provisions.
Or focus on what the devil would have me believe that this is the pit to death, with hopeless towering walls, futile effort, and never-ending fear.
When adversity strikes, obstacles form, and events surprise us…
God would have me see it as a season…planting requires a seed to be completely buried. To trust the sewer to know the exact depth needed to protect and give the seed the best chance for life and protection in the hole.
The devil would convince me that the dirt being shoveled in our face as we frantically try to climb our way out is just that… the end. The grave is dug, the dirt movers have already been called in. We will wear out, and eventually give up hope.
So for years I have fought ….years we have fought the physical and spiritual battles ragging.
But today, God reminded me…
don’t pick it up again Tarah.
Don’t start the climb.
Choose to trust me…
Choose to see this as the planting I have prepared for you.
The harvest is coming….
Hope never shines more bright than when it is darkest.
Allow the dirt to pile on, sit in peace as the pit fills (if necessary), because we trust that no matter what the devil has planned for our family, God will ultimately burst forth fruit from the pit.
Our only job is to be obedient in trusting His will over our life, and resting in peace that Father has it all planned out already.
If only we can be still and know that He is Lord.
I am not sure why Vivian was in the hospital a few weeks ago, or why Drake now had to go.
But…we are choosing to be planted.
We are not uprooting our peace and hope and going back to the frantic fighting forward.
Jesus is worthy
God is faithful
Holy Spirit is who He says He is.
So we are hopeful and at peace.
Please pray with us for continued healing and a quiet spirit as we continue forward on the path God has our family. We are so grateful for your prayers and support.