Can you imagine?
Life is a mystery. It was always meant to be. Sometimes that mystery can be a wonderful combination of blessings with a few moments of despair to keep you grounded. But what if your life is meant to be different? What if it's not the same and there are more moments of despair than you could ever give yourself the credit to handle? Despair always starts with one minute of one hour of one day. For some people that minute can turn in to a week, a month or even a year of challenges and problems they never thought they would face... but for people like my family and I it changes the expanse of our lives. My life time, my family's lives and the lives of everyone we know and love have forever been altered by the series of challenges that I wish to tell you about.
I could start from the beginning but that is not where the reality of our situation set in. Of course if you know me you know I am the mother of four wonderful children (Abby, Logan, Bailey and Brock) and the spouse of a brave man named Chad Jackson. I'm sure that if you know us you know how we met, how long we've been together and you may even know some of the struggles we've faced. But many of you reading this do not know us. So I suppose this is the time that I must present myself to you. Become worthy of every dollar or moment you can spare. I hope that our story can speak for itself and that I do not have to spend every waking moment imagining how I am going to get through this. I am fighting for the lives of people I love and to me that is worth more than all the money in the world. Realistically I know that it has to be worth a fraction of that to you and so I implore you to continue reading.
Bailey, our red headed monkey and youngest daughter, came along nothing less than sass. She was born to us and her two older siblings in Louisiana, among family and friends. We held down jobs to live the American dream with nothing more than grandchildren, porch swings and maybe a guitar solo or two in our future. Things were supposed to go that way, you know. Guitars, karaoke, having friends over for company every now and then. Making memories with our children in our beautiful state with my amazing partner.
Then one day things changed. That day for us was in the hot month of July in 2013. Everything was normal and then it wasn't. Right before our eyes our worlds were shifting from the normal we had come accustomed to right to the moment our six year old daughter, who was always so full of life, collapsed before us. I guess I should have known then that it was the moment that would propel us forward but even I had the hope that things would get better. Like the toss of some proverbial coin the fates landed on tails when heads was the winning choice. Our daughter went through test after test for answers we felt we might never get. We sought a solution, we got a diagnosis... Bailey has POTS (postural orthostatic tachycardia), EDS (Ehlers Danlos Syndrom), gastroperisis and a multitude of other diseases, disorders, syndromes and big words that sunk in to the depths of our world forever etching themselves to who we are, who she is.
Rare, she has it. As rare as POTS and EDS is, it is extremely uncommon in a child her age. What this meant for her we were still unprepared for. Seizures, headaches, fainting spells, accelerated heart rate, early onset puberty and her future? Even the doctors mumbled their responses at us with heartbreaking guesses of immobility.. bed ridden in simple terms. Our little girl, larger than life, could be bed ridden by the time she is done with puberty and the cure, the answer... was a tree falling in the woods. Her normalcy and ours blew away like dandelion seeds on the wind. My job was one of those seeds as I had to stay home to take care of her as the doctors tested, poked and prodded to get answers. Of course where I failed to bring in an income Chad had to provide so he picked up a second job and although we didn't see as much of each other we'd come up with a new normal. A slightly altered normal and we might have adjusted to this new normal if life hadn't destined us with more problems.
In 2014, just a month shy of a year to when Bailey collapsed, Chad started to develop a cough and trouble breathing. As with everything in life we went in expecting to learn he had something easily fixed. Like a cold, congestion.. anything normal. Surely we wouldn't be handed another huge burden? Surely we had enough to deal with already? But then this... He is dying... the doctor even looked stunned. How could this possibly be? He is in his early 30s and he has the lungs of a 90 year old unike anything the doctor had ever seen. His lungs are dying from the top down. It's a joke? It has to be? 'When can I go back to work?' Chad asked. The doctor grew serious. 'You don't understand,' he replied, 'I don't think you ever will go back to work. You have two.. maybe three years to live.' He points to something on the x-ray, a big black spot of empty air where white should be and his words start to swim blankly. Words we DON'T understand. Words we don't want to understand or grasp or pretend are ours now. These words that will come to take over our lives so completely.
If we were glad for a diagnosis with Bailey we would have been happy with one for Chad but we don't have one. Nobody has seen anything like this before. Yet, after six specialists all came to the same conclusion. Chad needs new lungs. There is no way around it, they tell us, he will have to go through a double lung transplant. The survival rates were frightening. The fact that they decrease every year was mind boggling. We can't, he can't, and I can't do this. I can't expect our kids to go through this. But we have to and so we do. Yet, there is no way to go at it. No way to tell your children, your family and your friends, the whys and hows. You get lost in the chaos one sick child creates only to learn your rock, your steadfast partner, is sick as well. Not only did this affect me, as I deal with the day to day struggle of keeping everything together, and my partner and daughter, both faced with serious health conditions, it also affects my other children (Abby, Logan and Brock) as their lives were also turned completely upside down and would only be further toppled by what was and what is to come.
We tripped in to a world we had never known before. Chad's issue is genetic, something he was born with, something our children might have. Since no doctor can come up with a diagnosis they don't know what to look for and of course we all are tested but for what we aren't sure. We all battle forward not knowing what the future will or would hold and feeling much like soldiers in the front line of a war we had never signed up for. Without an income Chad had to get SSI benefits so that we had something and where working provides, SSI supplements. Our bills became stacks, the collectors quickly become unwanted wolves at the door and there is no end in sight.
We were told that our best chance was to move away from the support of our community, friends and family in Louisiana four states north to Ohio. Our best chances were the hospitals there, not here. We were being told that we must dive in to the center of a community that does not know us. To try to make new friends with people who have never heard about our lives or the trials we have been facing. Even though our Louisiana community rallied behind us and brought together the funds and equipment we needed to make this move we stepped in to our van feeling guarded. Yet, we still maintained the hope that all would be fine because we are in this together.
Here we are now in Ohio and it is nothing like our home state that we love and miss dearly. However, we have gained the support of people here and have a close knit group of friends who do their best to help us where they can. Yet, even they are aware of the fact that without the help of the world our journey is still an uphill battle. The costs associated with a double lung transplant is astronomical. If you don't believe me please check it out for yourselves. (http://www.transplants.org/faq/how-much-does-transplant-cost
Our monthly funds are quickly depleted between rent, utilities and medical bills. Throughout the month we rely on food banks and others to be able to feed four children and have the gas to drive back and forth to near daily doctor appointments. We've entered in to a world of food stamps, medicaid/medicare and the good will of others. This foreign world of putting our lives out there for all to see, judge and decide. Which leaves me at your mercy.
Ignore the number you see on the side of this gofundme. Think about how much it realistically cost to support a family of six and then factor in that two of the family members are critically ill. That number quickly becomes a drop in a bottomless pit. I've seen gofundmes for just about everything from a new purse to an entire lifestyle. I've watched in bewilderment as they have met their goals or even in confusion as they got donations simply so people could leave a comment. At the same time I've sat starring at a table full of bills feeling like the floor was going to open up and swallow me as I know we don't have the funds to pay them. We've had disconnect notices, our kids have missed important things because we can't afford for them to attend and we've basically stopped our normal lives to accommodate the cost, stress and physical aspects of these desperate times.
My once vibrate husband can't make it ten steps without needing to pause for a breath. Our beautiful young daughter has questions about her uncertain future that we cannot answer. Every day has become a race from doctor appointments to what-do-we-dos and any sense of normal has seeped out the window little by little. All I can do is have faith that God will provide for us. Faith in the fact that there is good in people and that we can extend our net of friendship and support to the people who hear story or see this fundraiser. YOU are important to us and you matter more than you CAN ever know. Every dollar counts, every share, like and comment on our Facebook page matters and you make them matter. So please take one moment out of your day to do something for a stranger who is desperately relying on a world of them for HELP.
Thank you so much for taking the time to read our story! Feel free to share and if you have any questions please let us know.
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Luke 6:38 “Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”