I packed up Archer’s supplies a few days ago. No more medical supplies in my dining room. No more syringes to save so Archer could play with them, he liked the 5mL syringes more than the 50mL. No more logs on my refrigerator for his daily vitals and no more hidden curos port protectors hiding under the table. I suspect I’ll find one years down the road. These small green alcohol-containing port protectors never seemed to find their way to the trash. They always got left behind no matter where we were. Brandt and I both knew we wanted his supplies to go to good use. We asked around for a missionary program but didn’t land on one until I asked my church group. A friend had posted an idea to call a respiratory therapist we had both worked with prior. Someone I met through my homecare days. Turns out she has use for them in a missionary setting. I couldn’t think of a better place for his supplies to go than to someone who couldn’t afford sterile supplies on their own. I have no idea what country they will go to or even when they will go, but I have faith in knowing that Archer’s legacy will be brought around the world in a way that can help others thrive.
We never had the opportunity to donate any organs of Archer’s. I badly wanted to donate his kidneys because they had functioned well after his coding event. We pressed on for answers about donations. Turns out we would have had to let Archer go without us present. They would have to do the harvesting of organs while he was on life support in an operating room. That wasn’t an option for us. We already knew we wanted Archer to be in our arms when his earthly body stopped functioning. By donating these supplies, it helps us know that a portion of him will be helping others. This warms my heart.
When I was packing everything up, I was reminded how many obstacles we had to overcome as a family just to get the care we needed. The biggest obstacle was health insurance. The beast. The bad omen in healthcare that rules all the decisions and basically makes you want to puke every time you have to deal with it. I cannot tell you how many times I was told “No” when speaking with pharmacies and supply companies. “No we do not carry that anymore, No you need a prior authorization for that, No your medical plan does not cover that.” People, I’m here to tell you that there is ALWAYS a way in the healthcare and health insurance way. Every time they told me no, I cranked up my assertive side and politely reminded them that they were wrong. One of the most recent Nos I was told was when I was informed that his supply company didn’t carry the filtered tubing necessary for his infusion. Excuse me while I inform you for the 5th time that this specific tubing is not only necessary but is also life-sustaining for my son! I had to speak to multiple people for them to finally recognize, “Mam, I am sorry that you were misinformed, we will get this for you right away.” You bet you will because I know there are other companies you can reach out to. Don’t short-hand us on our supplies because you don’t want to admit to a competitor company that you can’t meet the demands of your patients. Absolutely not, and completely unacceptable. The struggle between pharmacies and healthcare providers is unreal. The communication is poorly accounted for.
I cannot stress enough the importance of advocacy. Throughout our children’s lives, we have had to work with seven different pharmacies. I didn’t always have to raise a ruckus, but at least 8 times out of 10 I was guaranteed to set aside 45 minutes to order one medication. The frustration was manageable but very annoying. It makes you want to jump through the phone and type for them. I was never too cruel; I choose my words wisely. It is safe to assume their lack of knowledge is due to poor training and hopefully not pure arrogance.
Inside the box of medical supplies, I included a thank you card. I also left my number and Archer’s website. I hope to eventually know how these medical supplies are used and learn how many people’s lives have changed because of these supplies. Helping others has always filled my cup. Brandt is the same way. He fills his cup by lending a hand. This used to aggravate me at least 50% of the time because it takes time away from our family, but I’ve gotten better after I realized that’s how he maintains happiness. We both enjoy being available to help someone in need. I think there is a much bigger picture that will eventually be painted with the tragedies we have experienced. I wrote earlier about the plan not being our plan but being our Lord’s plan for us. In order for this plan to happen, I have to be willing to endure the events that plans often entail.
Today I am concentrating on opening my eyes to see the gifts around me instead of seeing the negativity. It is so incredibly easy to let negativity consume you. Terrorize you and demoralize you. That is exactly what I was doing when I decided to see Brandt helping others rather than doing the things I had asked him to do. “There are only so many hours in a day” I would often say. I centered my interpretation of his help on me. It’s never been about me, but the negativity flooded my eyes and ears to be self-centered, negative, and demoralizing. Spinning that scenario around to see the positive side was a radical moment for our marriage. Now, we can both understand what drives us, what fills our cups and makes our lives joyful. We enjoy helping others and in turn, we love life. We strive for it.
Recognizing what fills our cups this early in life is a genuine gift. I imagine some people may go years without knowing what can make them happy. I suspect those years are filled with blind eyes and ears that do not listen. Keep in mind, our surroundings are so graciously impacted by our perception. If you don’t want to see the good, you won’t see it. It is truly that simple. Don’t overthink it or make it any more complex. If you choose to not see it, you just won’t see it. Your days will be dark and dreary. You’ll be filled with feelings of dissatisfaction, poor determination, and accept events without putting up a fight. Your fight is for yourself. Not anyone else. Fight for your happiness. Fight for your perception to be clear. Fight for eyes that can see the beauty in such sorrow, the light that comes from the darkness. Fight for your ears to hear the calling of your heart to fill your cup. Allow your ears to hear the most intricate details that are hidden from the human eye. Be an advocate for yourself, your loved ones, and for people you’ve never met. Put yourself out there even in the most vulnerable settings. That’s what this blog is doing for me. I am putting my story out there and hoping to fill someone’s cup. I don’t need recognition to be satisfied. I only need the opportunity to share.
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