So it's been a few good weeks since I had a complete breakdown, so I'm probably due. It all just hit me tonight, like a ton of bricks. And I'm back to an angry place. Emotions, grieving and times of trial are peculiar things. You never know when things will just smack you upside the head and disrupt your entire world, just when you thought things were "fine". I figure since my toddler is going through this developmental spurt and trying to make up for lost time by experiencing the terrible twos and the threenagers at the same time by melting down on a regular basis, I probably am entitled to an occasional melt down too. Jayson's meltdowns are much cuter than mine, though, because they involve that adorable pouty lip and some wicked hand flapping.
So what triggered this meltdown? The world. The world and its greed, its money and its lack of caring.
I'm experiencing a great deal of frustration, and it's frustration with the world. I doubt anyone would claim to really thoroughly understand how the world works, but I think most people have a peaceful relationship with the world. Not me. I'm angry. I feel my understanding and perspective has been thoroughly shaken up. There are so many things that don't make any sense. This is a very troubled world, and a very unfair, unjust world. Growing up I always thought of doctors, hospitals, and the medical profession as people and entities I could trust. Now, I'm not so sure. The things I know would shock you. They would rock your world too. I'm learning about how doctors play games with children's lives to involve them in research studies, or to avoid burning bridges or harming relationships with other doctors. When a friend tells me she was told her son can't see a particular specialist for a newly discovered life threatening condition because it would damage the relationship between two of her doctors, my mind is blown. When this is seen as acceptable behavior by her son's doctors because his genetic condition is terminal anyway, my heart is broken. When I learn that before I ever get a second opinion out of state, I need to first peruse the list of research studies taking place at the hospital to see if Jayson would qualify because it is a real fear and possibility that the hospital could take custody of him to force him to participate and give me a restraining order, I am shocked. When I know personally some parents who have gone through that hell when they went to get HELP for their kids, it becomes real. It's not just a story on the news. These things happen. I didn't know about these things before. I had faith in "the system". I thought doctors were heroes, and now I realize only some are. I thought hospitals were built to help people, and now I know that's only one of their many goals. I'm in a very vulnerable position; my son's life depends on doctors and hospitals. My whole world depends on them. How can my world depend on such a broken system? How can people not see it? A better question, how can people see it and not do anything?
Money. That is what this world is all about. And maybe if I had some, I'd feel more comfortable with that fact. I had a big epiphany tonight, and I need to think it through when I'm a little less emotional, but I think I'm done. I'm done jumping hoops and wasting time, all for the sake of money. I've been pulled into it somehow, because I've been thinking that's what a good special needs mom, but I thought wrong. I can't fill out one more damn financial aid application, or one more medicaid or SSI application. No more. They suck the life out of me, and for what? Nothing. We are always denied. The one time we were approved for temporary financial aid by an angel it helped us for a big 3 months, before the medical debt was back again. I spend hours a day for days or weeks to complete these applications. I scour the house for that one document they need. I make several phone calls for the other couple of documents they need. I have meetings and evaluations for more information they need. All for the sake of saving a few bucks. Yes, we need it. Yes, we're destitute. What special needs family isn't? But there is something that I'm lacking even more than money---- time with my precious son. In the end, it's not going to matter how many applications I did, how much assistance we received, and all of the financial "opportunities" I took advantage of. In the end, I'm always going to have wished I had more time with my son. And I'm not talking about time sitting in the same room with him when I handed him his ipad for hours so I could make the zillions of phone calls and fill out the hundreds of pages of applications. True, quality time. If today was Jayson's last day, then I missed it. I'm not going to miss his tomorrow.
I've asked myself what my problem is? Am I weak? Not productive? Not dedicated? How do all of these other busy families apply for all of these disability assistance programs and financial aid when it seems like I'm the only one struggling? Because we aren't the same. We are different people living different lives. I feel like my time with my son is too short as it is. Every day is a gift. Within each precious day I have to work 3-4 hours, and 8 hours on Fridays. I have to spend a couple of hours taking care of his basic and medical needs. On top of that, I have daily phone calls to make involving doctors appointments, medical billing, upcoming procedures, etc. I also use up some of this time sleeping and napping with J, because we often have very rough nights. Before you know it, the day is gone. If I want to spend quality time with him, teach him, work with him, help him with therapy, and make memories with him, there is no time for anything extra. It would be different if that something extra was something that inspired and strengthened me as an individual so I could be a better mom, but financial aid paperwork doesn't do that. So I really think I'm done after this last application I'm in the middle of completing.
For those who are not aware of how tortuous some of the applications are, let me enlighten you. Currently I just completed a 16 page application full of some non-nonsensical questions. It also asked for a list of Jayson's medications, and left 4 lines. It asked for a list of Jayson's doctors and left 4 lines. It asked for a list of all "positive" relationships in Jayson's life including family members and friends. Not only did it ask for names of doctor and positive relationships, but dates of visits, phone numbers and addresses too. Now that the application is complete, I need to send in his birth certificate and SS card. No problem. I also need to schedule Jayson a psychological evaluation... on my non-verbal cognitively delayed 3 year old. I also need a collection of his medical records relating to his diagnosis. That would be easy, IF HE HAD A DIAGNOSIS!! For most who complete this application, it is very clear what medical documents should be sent in. For us, we have no idea. I'm not sure which conditions, hospitalizations, labs, etc. relate to his diagnosis because we don't have one. This makes it very challenging to know what I should send in. Yes, I clearly called the office to clarify, but our case worker is out of the office... for the next month. Sigh.
To complete the aforementioned application we are needing to print some medical records. We are also in the process of communicating with a lab on the East Coast that may be able to do Jayson's Whole Exome Sequencing!!!!!!!!!!!!!!! I asked what I needed to get them, and I felt defeated before I even got started. I need the doctor's order. I know we have one, but actually getting it from the doctor may require an act of God. I have yet to meet another parent who has ever gotten this doctor to reply to an email or return a phone call. To get into see him by appointment is impossible, he is booked over a year out. Gotta love genetics. I used to have his medical assistant's number, but I've misplaced it. I've been tearing my house apart looking for it and the many other medical paperwork I'm needing for the handful of applications I'm working on. My house likely contains a forest worth of paper, all that is organized in different places. I also need ALL of Jayson's medical record to be printed and sent to them on the East Coast. I guarantee NO ONE outside of the medical world knows what that really means. We are talking about thousands of pages of medical records. Possibly, tens of thousands. And the cost for these medical records??? HUNDREDS of dollars. I have friends who informed me that for them to print just a couple of years of medical records it cost $500-$1000. For medical records!!! And no, despite all of the technological advances in medicine, we still do not have a way to streamline this process. They can burn DVD's but many of the files won't open, aren't legible and they can't be saved or emailed anywhere, so what's the point??? IHC and UofU medical files cannot be shared with electronically with those out of state. So, all we have is the paper system. The crazy thing is that I know darn well it doesn't not cost $500 to print a couple of hundred pages. And once I get those medical records, I will need to turn around and pay the money to have them copied at a copy center, then pay the shipping fees to have them shipped where they need to go. Medical records has turned into yet another money making business. Can't the medical system see they are killing us??? Yes, us as Special Needs parents are drowning. When can we ever catch a break???
This medical record billing is honestly the straw that broke the camels back for me tonight. Life is desperately unfair. This isn't the life I've chosen, it's the life that's chosen me. I am happy with my life, but it is incredibly challenging. There should and needs to be some breaks for families living in these difficult situations. Isn't it enough that I never sleep because my son is up several times a night suffering from God only knows what? Seizures, headaches, infections, restless leg, body spasms, apnea, etc. Isn't it enough that our marriage is given a low success rate simply by being special needs parents? Isn't it enough that we will be paying medical bills for the rest of our lives? Isn't it enough that our poor son has gone through 12 surgeries, approaching number 13, and lives in a constant state of pain and suffering? He gets fed in his stomach through a tube!!! He can't sleep without being hooked up to monitors and oxygen!! Isn't it enough that we can't grow our family because we know nothing about Jayson's genetic syndrome and we can't afford adoption? Isn't it enough that our vacation time is spent on hospital stays? No, it's not. They're going to charge us an arm and a leg to have our son's medical records that we need in order to apply for financial help and to get genetic testing for our son. See World? You're not so kind. You're money hungry, and you're greedy. I miss the world I thought I knew when I was 12, and even 21. This world is unfair and harsh. And days like today, it hurts and it makes me angry at you world.
So here's the truth that is not often said. Special Needs Parenting is more difficult than most people realize. It has recently been brought to my attention how rare it is for someone to share this special needs journey so honestly. I've always been real, and I've always been honest. I am part of a unique population of special needs parents, and parents of the medically fragile. I write for myself, but I hope I give my friends a voice too. This journey is hard. Think of those you know in your circles of church, school, Facebook, and neighborhoods who have been called to be special needs parents. Recognize their journey is hard. It's harder than the posts on Facebook; It's harder than the tears shed in church; It's harder than the silence and withdrawal. The battle never ends, not for a single minute, not for a single day. Recognize their commitment, their dedication and their strength. Recognize their superhuman powers and acquired talents. Recognize their exhaustion, frustration, fear, and need for help. The recognition does not relieve the difficulty or the pain, but it makes the difficult times not feel so lonely.
Thanks to those who recognize my struggles and encourage me to keep going. I can honestly say that because I have been honest and willing to share our story during our most difficult struggles, I have never felt alone during those times. The world may disappoint me, but the good people in it sure don't. xoxo
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