I have learned to roll with the punches. Having a child with a completely unpredictable, highly complex genetic disease has taught me my plans are not my own. That what I thought my life would be is not even close. And that I truly have almost no control. This lesson has come at a high price. Lot’s of grieving, counseling and a really good anti-depressant. And I feel for the first time since hearing the words Tuberous Sclerosis Complex I have come to terms with the reality of my life. However, 7 years in and we are tired.
This is an EXPENSIVE life and having a child that still is in the “can’t be left alone, needs to have eyes on them 24/7” phase is exhausting.
We realized about 2 years ago we were going to need some help.
I have spent 18months fighting to get Emmaus state services. You see most state services are based on income, however, it is possible, but extremely hard to get a child with disabilities onto medicaid only looking at THEIR income- which is usually zero. We finally got her onto medicaid, which I felt like was a huge win in our fight. You have to keep in mind every single step of the way the people who are “helping” with this process are overworked, and truly not invested, and so it basically fell on me to make sure people are doing their jobs and our process is moving along.
If I did my job as poorly as most of these people all my patients would be dead and I would be in jail.
However, they are our only hope of getting these services in place and so choosing kindness, working with them, trying to encourage them, and let them know what this means to your family, it is all part of the process.
Once on the waiver it is time to apply for supports, which happens to be part of the deal, if you don’t use the supports you lose the waiver, but wouldn’t you know it- it is almost impossible to actually get the supports. We finally did, and then two weeks later, during our annual review the review board decided we actually weren’t able to get them for a long list of ridiculous reasons. And then magically after my total meltdown and call to action with our case manager we were granted them again.
I have come to terms with Emmaus’ disease. With flexing my career, where we live, our finances around her having TS. I can deal with the unpredictable, because SHE is precious to me. These challenges, how we have adapted, the incredible joy she brings, and more than that- how we have chosen to live with reckless hope, All of that is our story.
However, I will not be a slave to this broken system. I am so thankful for the resources we currently have, don’t get me wrong. They are giving us freedom we have never had. However, they do not come without a cost- an emotional cost, the unpredictability and fear they might at any time go away leaving us suddenly without help, or a plan. That is not how you should have to live life. And it is not how I plan to do so.
THIS WILL NOT BE MY STORY.
And so once again I must evolve, I must grow and shape something that gives us freedom to live differently. These are the things that change us. That drive mankind to be more, to do more, to live lives of freedom.