February 2, 2018, my mind was fully on the upcoming surgery David will be having in March. Along with all of his other chronic issues, he also has curvature of the spine. It is very common in kids with cerebral palsy. As they grow, their spine continually curves. Most can't just be fixed with a back brace because of their muscle tone, so it is a delicate decision when to do the surgery. The doctor was waiting until David had 60% curvature. After 60% then the curvature can start causing real problems to the point that it can start crowding organs and cause brand new issues that shorten life expectancy and affect quality of life. Already, the curving has caused noticeable leaning which when he walks with his walker affects his hip which although David never complains, has to cause pain.
The surgery is a 4-8 hour surgery with a stay in the PICU following and then a stay on the peds floor and then a lengthy recovery at home. We chose March to do it because the cold and flu season would be almost, if not completely over and David would have enough time to heal so that by summer he could be doing water therapy in his pool.
The surgery itself scares the bejeezers out of me because it is a spinal fusion. His time under anesthesia will be very long (David doesn't do well with long surgerys and that much anesthesia) and quite frankly, we aren't sure what Davids walking, sitting and moving abilities will be following the surgery. Yes, he should be able to sit, stand and walk better, but........ Once again, we will be dealing with a whole new set of normals.
It was my intention that while David was recuperating downstairs post surgery, that I would finally finish redoing his bedroom all in Spongebob. (Yes, he will be able to go upstairs after the recovery, because he will have a stair chair.) I have literally imagined how excited he would be the first time he goes up those stairs to see his Spongebob room. It is part of what has kept me going, thinking about this surgery. In fact, I never thought anything would or could take a back seat to the worry over the surgery. Apparently somewhere out in the universe though, someone said, "Hold my beer....." because February 3, 2018, I found something that is giving the worry over Davids surgery a run for it's money.
Going back a bit, the house we live in is the house I grew up in. My dad purchased it for my mom and us kids back in 1976. My parents were divorced and this was part of their divorce agreement to each other. Mom lived in this house until her death in December of 2002. In February of 2003 my dad approached me and asked if my kids and I would like to move into the house. We had been living in a mobile home outside of town since my husband had died unexpectedly, just months after David was born. Moving back to "my" childhood home gave me some piece of comfort as I had three boys and I was on a journey of raising them by myself, something I had no idea I would be doing. I did verbally make sure at the time that if we moved in that he wouldn't decide to up and sell the house and uproot us. He said that he would deed the house to me upon his death. This is a verbal promise that has been made to me over and over again in the last 15 years and the last time was July of 2017. "You will never lose your home! That is your home!" He was my dad. I never questioned it's validity.
On February 3rd, our whole world blew up. I was called to my dad's, where my brother handed me a letter of eviction stating that we had until March 1, 2018 to be out. It was also stated that anything left on the property such as pool, deck, shed, etc, would become their (my dad and brothers) property. Now come on....it is February in Kansas. Most days our temps are not above the 30's. The pool is frozen solid but we are to have it drained, dismantled and removed by the 1st? We are talking a 18 x 33 foot pool.
According to what I was told, their thinking was that my dad wanted the money in case he had to go into long term care. Fair enough. I was told that I could purchase the house at 75% of the appraised value, them both knowing full well that we live on social security and I stretch that from month to month and that due to life, I couldn't buy a stick of gum with my credit. However, regardless of their reasoning, this thing was done behind my back and premeditated, giving us no time to prepare for anything. It was a devastating blow for many reasons but the most import was David.
David is potentially about to lose the room he loves, the home he loves, possibly his dogs. He is going to lose his pool that was donated to him, possibly his school, teachers and classmates and everything he has known for almost his entire life. When I reminded my brother that David was having a major surgery in March, his reply was...."Well you'll be moved out by then." Really? Who says or does that?
It took me a few moments after leaving "the meeting" with them to get my wits about me. It was a blow that came out of nowhere and I had to find a way not to implode David's life and all he knew. David just doesn't handle change well and this is more than just a little change.
David and I live in an amazing community. There is true goodness and kindness all around. The community of Mulvane has gotten behind us and are trying to help raise the 75% so that David can keep his home. It is no longer just mine and David's fight (which is what I am used to) but we have warriors all around us, selflessly fighting right along with us. Unfortunately we are talking about 75% of $104,000.00 plus closing costs and I believe my brother mentioned contract fees, so this is not just an easy thing. This is a daunting task and March 1st is drawing closer with each passing second.
There is a fundraising site YouCaring, that many have graciously donated to, and for those that don't like those sites, there is a PayPal you can donate to with the email address lelam3@sbcglobal.net and finally for those that feel a bank is the only way to go, there is a donation account set up at our local bank:
Carson Bank
P.O. Box 158
Mulvane, KS 67110
There are also fundraisers being planned and people offering their help in anyway possible. I am overwhelmed and beyond grateful that people in our world as well as complete strangers care so much that they are generously doing what they can to help. I can't even fathom the kindness.
One of the biggest things and probably the greatest long shot, is that many have turned our story into the Ellen Show. I was amazed when I heard that so many people had been sending our story in, but I am fully aware that we are one of a million people that need help and our story doesn't compare to some of the need out there, however.....even a long shot is worth trying. So in trying to get others to continue sending our story in, one of the people trying to help us posted on facebook that she would like to see stories about David and what he means to people. Well.....this entire blog is David's story. I started it years ago and it is a time line of Davids life. But I decided I would write this today and tell Ellen and the world what David means to me.
Dear Ellen,
My son David is 17 years old. That just sounds like a statement, but in fact.....that in and of itself is a miracle. David was the gift we didn't know our family wanted or needed. He was the most wonderful surprise when we found out we were pregnant, but the unthinkable happened and David was born prematurely at 27 weeks, 13 weeks premature. He weighed 2.2 lbs and was barely 12" long. He had a grade 4 brain bleed, seizures, strokes and he got Candida (a yeast infection of the blood.) He was on a vent in the NICU for 3 months with the doctors telling us that he was "beyond critical" almost daily. More than once we were told that he wasn't going to make it through the day, so to prepare ourselves. He was a miracle though and after 5 months in the NICU....we brought him home. Sadly, his father only had a few more months with him, then he died suddenly of a brain aneurysm.
Since the moment of his dad's death, I have done it all alone and as hard as it has been at times, I am honored to be his mother and to have the job of raising him. David has cerebral palsy, hydrocephalus, he is hearing and visually impaired, developmentally delayed and he has a seizure disorder. More than that though, David is an inspiration! He has undergone painful surgeries to help his muscle tone and help him walk with a walker. He has come close to death several times and from what I understand, much of the time he is in pain. You would never know this though. He just keeps going.
David, although very developmentally delayed is also very smart. He doesn't speak but he never seems to have a problem getting his point across. He is funny with an amazing sense of humor and his laugh is so contagious. He can't help but snort when he gets tickled and everyone in the room can't help but laugh right along with him.
David has taught me that we all have our issues but he has never let his disabilities or issues get in his way. He loves life and he loves the people in his life. He has also taught me that normal is just a word. He has taught me patience, the beauty of life and what it is to love a thousand times more than I ever dreamed possible.
David's favorite things are his 9 year old corgi Spud, anything that makes musical noise (I was in the process of getting him a drum kit), his 4 year old niece Willow, Hot Wheels cars and watching Spongebob and Cops. He loves music and he especially loves to hear his older brother sing.
David appreciates the smallest things and never complains about anything. He pushes himself like no other and at times makes me ashamed that I can't keep up.
David is involved with Circle of Friends at school which is an organization which has general education kids as peers for the special ed kids and together they go on outings and do fun things together. The kids all love him. He has known them all of his life and they have learned how to communicate with David and to love and appreciate him as the special human being he is. It is an amazing thing to see.
Ellen, David has spent his entire life fighting and yes that is quite an accomplishment for a 17 year old who wasn't even suppose to get out of the NICU. Because of Davids diagnosis's, there will be more pain in his life, more surgeries, more scary moments, but David will fight it all and I have no doubt win because of his strength of spirit and his love of life. With all of this though, David simply doesn't deserve to lose his home. He doesn't deserve to lose everything he knows and loves and he doesn't deserve to maybe have to leave the town and the people he has grown up with and who love him.
So yes Ellen, I am begging for some help. I am a mother and I checked my pride long ago. I will do whatever it takes to help my son and if you can help, I promise to spend every day of the rest of my life paying it forward.
Sincerely,
Lisa Elam
aka David's Mom
I pray that Ellen comes through on this. I get so stressed looking at the youcare page. I know you are. We have to have faith and keep praying. Come on Ellen please please help!
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