They’ve Chosen the Wrong Battle
You’re now in a secret world. You’ll see things you never imagined; ignorance, rudeness, and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle and be present in that moment. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist, but most of all, you’ll be a mom to the most wonderful child.
Geraldine Renton
“They have no clue who they are messing with!” I have said this over and over in the past few weeks. Medical research funding cuts were enough to rattle everyone who has ever seen or benefited from these life altering research grants and funds. And to now potentially cut some of the universities and schools who receive grants, could lead to many losing their trial treatments, medications, and life saving therapies. Not only cuts to research, but claims of being able to find the cause of autism by fall 😳 How rude! Really, how appalling! And this is when I start to feel a little mischievous advocacy creepy up in my soul. You mess with kids- you mess with medical parents advocating for their children- you certainly don’t know who you have stepped into battle with.
I’ve been that child. I’ve been that parent. I’ve witnessed parents and children. We will be advocating for all children until our last breath. So, I’m not sure who didn’t get that memo to DC, but I feel the medical mamas, papas, grandparents, aunts, uncles, siblings, and others rising up!
I’m not going to write specifically about finding the cause for autism by fall- because honestly, autism is very real and has a wide range of mild to severe. And the research I believe is in a critical stage. Therapy, medications, environmental helps- there is lots of research, lots of information when you “google,” but it really comes down to treating the individual child. And the whole finding a cause, is an insult on this community and those who love them.
What I will write more specifically on is medical research. If you have benefited from medical research or have known someone who has, then you know how critical this funding is. Many of these trials are groundbreaking for cancer research. For example, when I was first diagnosed with Von Willebrand Type 1, there was a medication that was needing to be FDA approved, but they needed more proof that it did what they claimed it would do. So my parents and I signed a bunch of papers and I was given an IV of this new medication and labs were drawn, and now they have enough proof and it has the FDA stamp of approval. Also with my blood disorders, all my lab results get put into this large database for blood disorders to help with research. I will never know if it gives the researchers an “AHA” moment, but I can at least offer.
Another way medical research has impacted our family, is through my mom. She was diagnosed 12 years ago with an immune-deficiency. However, it took 10 years to target what immunoglobulins were lacking and also find the right IVIG medication therapy that could rebuild her immune system. Her immune system will never be 100%, but the advancement in this area of research is incredible!!! I have been completely blown away by what she is learning and navigating.
A couple of posts ago, I mentioned I had requested my medical records and had been reading through them. Well, when I say they don’t know who they are messing with, my records could tell a story. It brings me to tears. A parent’s gut is to be trusted. And all praise and glory to God. I have always felt very well loved, but as I read these records, I am in awe of the perseverance and self-education, simply because I was their child. That’s a feeling of joy and comfort that you cannot fake. And the fact is this was happening at the same time for my brother in other clinics. In addition, my brother and I never went to the same school, nor were any of these doctor’s appointments close to home or school. My brother’s school was 45ish minutes from home. And our appointments were a good 45 minutes from home. As far as I remember, my brother was having appointments about every 6 months, and I was having appointments about every 3 months and then every 6 months, with multiple doctors and not on the same days.
So imagine a parent or parents who have been keeping up with the above schedule, plus having to remember medications and times to give medicine. Meetings with school authorities. Making sure you get the insurance that will cover the majority of your family’s medical needs. And then, WHAM, everything comes to a complete halt. Devastating. Not only medicine and research, but schools are losing funding, so what will they cut first?
What about the world-wide medical research and health initiatives? When we cut these as the United States, we not only are hurting those on the receiving end, but also the whole world including us. And what was that percentage of the budget? Oh yes, 2%. Seriously! We call ourselves a “Christian nation,” but that’s a big joke. We are shipping out foreigners. Stripping healthcare from the least of these. And bullying those who we view as “less than.”
Now, don’t take this as I am defeated, because I am not at all. I am a medical patient, a medical mama, a medical daughter, medical sister, medical granddaughter who is not afraid to speak up, stand up, let you hear my roar! (I was Simba in a dance when I was little😊)
What shall we do with all my rambling today? Well, here’s just a few suggestions:
- Do you have a friend or family member that has a diagnosis you are not familiar with? Take a little time to educate yourself on it. National Institute of Health, CDC, healthy children.org are good places to start.
- Pay attention to what’s happening in the News with the NIH, CDC, World Health Organization.
- And ALWAYS pray for those on the front lines advocating, giving it their all! Pray that God will sustain them, open their weary eyes to the miracles, restore their energy, protect their immune system, that He will take every thought captive that is not from Him, and that they will have peace when they have done all that they can.
- Pray for those at the CDC, NIH, and in other government to have the courage and integrity to speak up no matter the consequences- easier said than done.
- If you know someone working in the medical research field, encourage them, let them know they matter, their work matters.
If we don’t take advocating for our children seriously, then who and what and when will they advocate for? They are always watching…
Life Book of the Week: My voice is a Trumpet, by Jimmie Allen
