The other day we had to call the fire department just to get Rylie in the house after school. (Just add that to the list of things I never thought I would say…) This picture can represent a few things. First, it can represent the literal- that Rylie’s outdoor lift to get into our house stopped working as soon as I got her to the top, and the door locked and would not open, trapping her inside. It was 20 degrees outside and feeling panicked I called the fire department in the meantime while we tried to troubleshoot how to get her out…
The picture can also show how you can find joy in any circumstance. That you can find the positive in anything. Rylie was smiling in the picture, trapped on the lift, in 20 degrees, for over 40 minutes. I will tell you that I was certainly not smiling, as I have made multiple phone calls over the last couple of months to try to get Medicaid to send a provider out to service our lift because it was making a weird noise. They had yet to respond, and you can imagine my frustration realizing had they came in a timely manner this could have probably been avoided. But Rylie is smiling because well, it’s the fire department. And fire trucks are one of her favorite things ever, and- because somehow this kid seems to almost always find the good in any situation. It is like she automatically assumes there must be something good about even the most dire of situations. But Rylie wasn’t cursing Medicaid or complaining about the wind chill on her cheeks, she was smiling. Because she found something to smile about…
Lastly, this picture could serve to represent the broken system in which individuals who clearly have no idea what it means to live with a disability, are the ones making decisions on what people with disabilities should and shouldn’t have. And one of the things that they (Medicaid) deem unnecessary to pay for is a second accessible entrance for our home. They allowed us to use Rylie’s waiver funds to have the lift purchased and installed, but I found out this week that we are fully responsible for providing an alternate accessible entrance (like a ramp), EVEN though Rylie has $10,000 in a waiver fund that renews every year to spend on things like home modifications. We can only apparently use it for home modifications that Medicaid approves and deem necessary. That is also why after 3 years of denying an alternate specialized seating for Rylie (because she has a wheelchair so “she does not need another place to safely sit” according to Medicaid) we finally found a way around in an alternate funding source to purchase the chair. We even had a doctor’s note for the chair stating it was medically necessary because it allowed her to sit in a position to alleviate pressure because she is so prone to pressure sores. In addition to other documentation and a letter from her therapist. But because Medicaid has been given the authority to decide what is and isn’t ‘medically necessary’ they easily continued to deny it based on their conclusion. And again, even though she has another $10,000 in her waiver funds for equipment needs just like this one, we could not touch it because of the reason it was denied by Medicaid. And in case you are not infuriated enough, there is nothing in place for individuals like Rylie in an emergency situation like when our lift breaks, to provide an urgent repair, or alternate accessible entrance. We still have to wait for her case manager to send papers to the lift company to sign, then return to the case manger to sign, for her to then return the document again to the lift company, at which time they can come out in the next 2 or 3 days to look at the lift. But if they need to order parts it will take even longer.
Now maybe you are thinking, ‘Well, that is just life. There is a process to get things done and fixed like this.’ Well, yes. BUT, in the meantime we have to figure out how to get Rylie in and out of our home safely in the middle of an icy winter, up and down multiple stairs in her wheelchair if we need to take her to her doctor’s appointments, to get her on school transportation, or anywhere else for that matter. And since I (Lorie) can not physically do that by myself, I have to ensure that another adult is here when she does need to leave the house to physically get her out.
And by now, I’m sure some of you are thinking, ‘Well, you guys should really have been more prepared and had a ramp installed even if you did have to pay for it yourself.’ And you wouldn’t be wrong, but maybe just a bit ignorant. I canNOT even begin to articulate accurately ALL of the things that go into caretaking full time for a child with a significant disability and multiple complex medical needs. And you know what? I cannot do it all. We cannot do it all. And we try 100% day in and day out to keep our daughter alive, well, clean, and nourished through tube feeds. Currently while we are pumping formula through one feeding tube, we are having to drain bile from the other feeding tube and keep records of the amounts while weighing the diapers our now 16 year old because she was getting dehydrated so we now have to monitor urine output and calculate how much Pedialyte she needs to keep up on her electrolytes. 3 times a week she has to be given a medication to force her to have a bowel movement because she cannot have them on her own. She is on 10 different other prescription medications that need to be given though her tube throughout the day, and we have to suction extra secretions from her mouth with a suction machine so she doesn’t get choked. We are at multiple doctors almost every month to keep up with her diagnoses and care needs, and often because there is something new that needs to be addressed, and currently we are discussing and considering 4 different surgeries from 4 different specialties for her to go through in this next year. I spend much of my days messaging and calling doctors and other medical professionals, or having to fix or check up on the supply companies or pharmacy because inevitably someone does not fully do their job, leaving a mess for us to sort out. SO, if you think we probably should have been prepared then well, yes… but we weren’t. Because we have been busy doing the one million other things we have to do daily just to keep her alive. And because I guess we just didn’t think of that one other thing we needed to take care of since our lift has never broke like this and left us in this kind of predicament.
Now, I really hope you don’t feel pity, or read this and just feel bad for us. That is not the intention here. And you don’t have to tell us how great we are or that we are heros for what we do. Because honestly you would do the same if it were your child. What I DO want you to feel though is outrage. I want you to feel frustrated and angry with us at the lack of accommodations provided for people with disabilities. And I want you to see those in your own communities and neighborhoods with disabilities and know that things are not good enough for them. The world is not welcoming for them. There is SO much they and we have to fight for just for basic rights and care and general accessibility in the every day world. And it is NOT okay.
Feeling sorry for us doesn’t change anything. Actions speak louder than words. And in this case, they speak VOLUMES more than mere words.
In the Crip Camp documentary on Netflix (that I’m insisting you need to watch if you haven’t already), there is a quote:
“You don’t have anything to strive for if you don’t know it exists.” And while this quote was said in the context of someone with a disability recognizing their potential, I also think it is a great way to speak to everyone who is unfamiliar with the struggles and difficulties that people with disabilities face on a daily basis. Because if you have read this far, now you know a bit of what exists in our lives. Giving you something to now strive for with us and for us. You can’t say you didn’t know because if you are reading this sentence it’s because you read everything before it that told you…
See, the thing is, even though you may not be able to fully understand, you can stand with us in advocating for what is right. And you can sit with those like our daughter who cannot physically stand and just be present in being their friend. And you can be our personal fire department, so to speak. I was reading on a website about ‘10 Traits all Great Firefighters Have’ and included in the list was self sacrifice. It stated, “Self-sacrifice means that you are equally concerned with the well being of others as much you are with your own well being. Those who possess this trait volunteer their time to worthy causes. They have a natural propensity to help others and have a giving spirit. They also tend to be those we label as courageous, because they are willing to take risks and make sacrifices in order to help others.” It made me think- shouldn’t we all be more like firefighters? Maybe not by fighting literal fires but fighting through advocating for those who are marginalized and valuing their lives as important as your own?! I also found it interesting in that definition that it says they tend to label those as courageous because of the risks they are willing to take and sacrificing to help others. Self sacrificing is ‘courageous!’ See, I called the fire department that day because I knew they would come without hesitating. I also knew that they would risk anything to get Rylie off of that lift, because she is just as valuable to them as any other person who would have called on them for help. (And I realized just how serious they were when they brought out the giant crow bar to which I convinced them to wait and try a less violent way so as not to damage her very expensive lift even more). Firefighters don’t decide if they will help, they decide how they will help. So often we are fending for ourselves by ourselves, whether it is Medicaid hearings, or fighting for her literal rights as a human being. Medical supply company botches that we have to sort out, or an extra set of hands to physically taking care of every daily living need for our completely dependent daughter each day. Hours waiting in doctors offices and late night cries when some days have just been SO heavy. And many days it is just. So. Lonely. It is YOU who can help be bridge the gap to bring change to how we respond to those most overlooked in our society. It is YOU who can change the narrative to this population, in how society responds in love instead of neglect. Not if but how. And it is YOU who can be the literal voice for those like my daughter who does not have the full ability to verbally fight at a level that will bring change. A voice for a community of people who are so often not seen or heard. IT. IS. YOU.
I’m hoping by now many of you reading are feeling that you do in fact want to do more, but maybe you do not exactly know what that realistically looks like. So I’m taking it upon myself to helpfully give you some creative ideas to reach out, stand up, and speak out:
Ask questions.
Okay so maybe actually it’s just the one thing. But perhaps it’s the most important thing of all because it places you in the posture of becoming educated and aware, and bridges the gaps where you can truly empathize with someone different than you. The crazy thing is, one question could quite possibly lead to multiple other things! You could ask, “What do you need?” Or maybe in the form of “How can I best support you?” People need to be given the freedom to speak their needs without feeling like a burden. And because those with disabilities or myself and other caretakers are not used to being asked this- they may initially respond with not knowing how to answer. This would be a case in which maybe it would be good to help give them examples of ways you would be willing to help like: *helping them get to an appointment *giving them a gas card for appointments *spending time with them during some daily activities or routines *how you can physically assist at times *helping them with cleaning their house or other household chores *offering to bring a meal *offering to hang out for support while they make multiple Medicaid phone calls (This one could also involve bringing a punching bag and or larger than Venti sized coffee) *And last but not least—you could simply just be their friend.
Now, maybe you think all of this is great but it gave you a funny feeling in your chest. Like that little bit of anxiety you get when you think about the unknown. Maybe the feeling you get when you lose control of something. It’s okay. Because the answer to the question you ask may very well be something you are uncomfortable with and may even scare you a little. It’s likely it could be something super unfamiliar, or maybe it would be something simple like bringing a meal. What matters is how you respond to these feelings of uncertainty. You have a choice: you can give in to your anxiety and the unknown and never experience the blessing of entering into a relationship like you have never had before, OR you could push through any fear, ask a question, and let Jesus do the rest. To simplify: Be like a firefighter. (That whole courageous thing.)
Here is a beginner tip: Focus on the asking. If you focus on all of the what if’s you will certainly drown in your fears and anxiety of all of the uncomfortable possibilities that may await in the answer. But if you take one small step to just ask, I’m confident you will not regret what may happen next. I won’t guarantee it will instantly be exciting and easy- But I will guarantee – you won’t regret it.
Now excuse me while I pour another cup of coffee and follow up for the 6th time this week about that lift that still has not been fixed. Another ‘fire’ to be put out you might say. I have an extra chair and mug if you’d like to join me…
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