Yesterday I was sitting with our PT discussing some pretty severe issues we are seeing with Drake’s scoliosis and his poor little legs. His left leg is swelling and we aren’t sure of how or why. We are reaching out to our team of doctors to see if an X-ray is sufficient or if we need to do a more extensive exam and monitor blood flow to the leg with an MRI.
Drake has had 5-6 MRIs in his little life. Most studies have been over his little brain and trying to gain any knowledge into what is happening with his disease. Malformations can give insight to how and why things are not developing normally, which then allows us something to trace and study to help alleviate the symptoms.
Always...always chasing symptoms....
Drake has always suffered from a severe curve in his spine. Years of awful seizures, coupled with no treatment, compounded with no muscle tone for structure...it is a force to recon with. Something shifted when his heart stopped in July. We do not fully understand what happened. Although his mind is coming back to us daily, his little body has taken a pretty big hit. His lower extremities have no movement and his little legs hang now. His lower spine and hips are extremely locked in a compounding twist that in order to have his upper body straight means that his right hip has to be almost touching his right rib, resulting in his spine being twisted almost completely under his little body.
He is so brave....I know he hurts and I know how bad it must feel. He never complains. He will cry out if we move him wrong letting us know we have pushed too hard, but he always settles his eyes back at you almost as to let you know that he is ok. Almost to reassure us he knows we didn’t mean to hurt him. I have never watched a child that can not speak, speak a thousand words with one look.
I called Eric home from work yesterday early. I hated to call him as I know how much he has to push on work days to get everything done. He is phenomenal at helping others and I love watching God refine and grow him. All I could text was, “please come home...everything is fine...I just need you to come home”. He came home shortly after his two o’clock appointment and quickly was trying to asses what was going on. I don’t normal call so he knew something was happening. The house was well, Drake and Viv were doing relatively well considering how quickly they can become critical...
He kept asking me what was wrong and honestly I couldn’t find the words. My soul ached, an ache that is so familiar and so hard to wrap words around.
This week a precious family lost their little one. She was gorgeous...the precious family was a young family, with a million odds stacked against them. They fought for her and for each other fiercely. They created a beautiful life for each other and for that little girl. They did everything right...they loved, they cared for, they honored, they PT, OT, Speech'ed, they went to doctor after doctor, they fought for her...
They hoped...
And they woke up this Tuesday to their precious baby....gone.
That beautiful baby no longer knows the pain of NKH...did I tell you she just turned four....Four years seems so short...but the hard, painful reality to a parent with a child living with NKH....you know the hard agonizing days, and how days can feel like an eternity of suffering for their precious bodies.
Praying over their family this week, feeling the sting of how fragile these precious babies are....trying to hold onto the truths God gives us when we are hurting, praying for peace over them, praying for peace over the fears that flood in knowing that this is my babies' future...
Yesterday it was an overwhelming crash into Father. I sat at His feet and just talked to Him.
Lord, I don’t understand...
When you are a rare disease parent...you are told from day one...
”No matter what you do....it will not be enough....
Our doctors exact words to me, sitting in that little patient waiting room while Drake clung to life support...
”Tarah, even if you started tomorrow... you would never make it in time."
Yesterday that echoed in my mind...all day.
When you are a rare disease advocate...you tell your child’s story a million times a week...to anyone, to everyone. You educate their doctors, you talk to their therapist, you explain their symptoms, you analyze everything....because everything means something.
Then you fundraise...on top of taking care of their daily needs, medicines, appointments, diet changes, weight shifting, prescription orders, supply orders, PT, Speech, OT, nursing, bed sores, scoliosis, seizures, pain management......you schedule your fundriasers around birthdays, around events that fit supporters schedules....you try to be as thoughtful of people’s time, as they have families and work they are trying to manage....
And you have to fundraise....
You are a rare disease, patients are the ones responsible for funding their own treatment.
People are always shocked to know that patients have to fund their own research. That seems awful to expect the families of children so sick to have to fund their own treatment research. But it is the hard fact....you know why....because that is how society has set the stage for a family with a rare disease. We have learned to get more excited about a new release of a new app on our phones, or a tv sitcom than we have been told about than a bake sale to help with treatment for a child dying.
So you know how families with rare disease fund research? We use our children’s birthdays, or we have to use their funerals. All the time in-between those two dates get lost. Children fall into being numbers and the statistics seem to take over.
1 in 500....
1 in 76,000...
Your child has weeks to live....
If they make it that long....they won’t see their second birthday....
$300,000 to test the new treatment...
3 years of funding commitment to insure its worth researchers time to look for the treatment
-Don’t get tired...you are the only one pushing
-Don’t give up....no one else is coming
-Don’t know enough.....learn, you don’t have time to make mistakes
-Don’t get discouraged....you have to look into their little eyes and tell them hope is coming
-Don’t falter...you aren’t going fast enough already
As I sat wrestling with God....Father, I don’t understand....we fundraise, we research, we generate massive efforts to change the disease, we unearth treatment, we meet with families to help guide them on the new research, we meet weekly with research teams around the country....we coordinate doctors education, we track every ounce of movement with Drake and Viv, we calculate everything, we are writing manuscripts,
we are running as fast as we can possible run......
how can it not be enough...
why is it not enough Father.....
How can we make it be enough so these precious children can see tomorrow?
How can we carry this so these precious families can stop carrying this crushing weight.....
I sat and just let Father hold me...and honestly He didn’t give me the answers I begged Him for....but He held my hurt. He held my pain, my inadequecies, and He held my fear. Because He is big enough for all of it. All of the pain, all of the suffering, and all of the fear. He is big enough to take it and make something beautiful with it... that is what He does.
Today we start again....
we get up,
we start the tracking,
the caring,
the fundraising,
the research,
we start the pushing
...again.
Because He reminded me in my hurting of a verse that for years we have worn on our shirts. He reminded me of the trust I have in Him because He is enough.
He is Enough
Galatians 6:9
“And let us not grow weary of doing good, for in due season, we will reap, if we do not give up."
Please pray with us for the family that will bury their precious baby this week. Pray for Father to be ever so near and real to them.
To Him be the Glory
Forever and Ever
-Amen
