I dialed my friend Kathryn and she answered.
"Can you believe it, Kathryn? We just finished chemo and now she has pneumonia? Oh my gosh, are you kidding me?" I say in response to her, "Hello."
For a moment, I think I stopped hearing noise altogether. I could hear my heartbeat thudding in my ears, I could feel my mouth go dry. But I couldn't speak, and I couldn't even think in that moment. I was frozen, paralyzed.
"I didn't mean that to sound harsh," she went on. "But, I'm a kidney transplant survivor, and I will ALWAYS have a different life because of that. I'm going to Mexico next month with my husband and I have to plan very differently for this trip than he does. I have to have labs run, I have to make sure all my medications and prescriptions are current and that I have enough for the whole trip, and to last me a couple of days after we get back. I have to carry a different set of emergency phone numbers than other people when I go on vacation. I have to think about my medications and how I'm going to take them when I'm in a foreign country with different water and dining habits. But, I'm GOING to MEXICO on a vacation...and that is a huge blessing and I just have to accept that I am going to experience it differently than a person of "normal' health."
Those words, the ones that felt so brutal in the moment, changed my life in an amazing way.
"Tammie Jo, this is your life, stop waiting for it to change."
I have a child with a rare disease. She will ALWAYS be rare. We will ALWAYS be a circus show when we go somewhere new and that is to be EXPECTED. Stop waiting for that to change. Be courteous to them, and ask them to please stick to the issue at hand, and explain that having a pointless parade of doctors coming through the room is not helping to heal anyone, nor is it helping our daughter's anxiety.
Stop waiting for the people in the grocery store to NOT stare when they see our daughter with her white cane. They aren't used to it. It's not that they are rude, it's that they don't know how to respond because they don't see it every day in their world like we do.
Stop waiting for the schools to be able to meet every single desire that we have for our daughter's education. Does the law say we are entitled to it...absolutely...but there are budget shortfalls and teacher shortages and overcrowding in schools and we need to be realistic. We are all doing the best we can and I shouldn't assume that anything is being done intentionally to short-change our daughter.
Stop waiting for the medical bills to all run through smoothly. I know, in my human brain, it seems that 3 years should be enough time to get all the glitches straightened out, but they aren't, and I will continue to see rogue bills show up which Medicaid should have paid. I have the phone numbers, and I have the order of options and which "options" to select written down...just make the calls, be diplomatic about it and get it resolved.
Our sermon at church this past weekend about getting rid of bitterness in our lives. Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice." Ephesians 4:31 NIV.
I will never know what it feels like to have a "normal" child. This rare disease world is all I know. It involves almost every "-ologist" you can name, and that's aside from the various therapists we have seen too. But, recognizing that this is the journey God designed for us helps me to recognize that I wouldn't have it any other way. And I know God has broken our hearts many times with WAGR syndrome, and each time has given us a new chance to show empathy and compassion to someone else, in Jesus's name.
If you find yourself anxious because of the constant "shoe-dropping"...maybe it's time to search really hard in your soul and see if you need to stop waiting for things to change.
Pray: Heavenly Father, bitterness is hard to detect because it masks itself in pain, anger, and worry. I pray, Lord, that I may continue to purge myself of bitterness by accepting what IS and praying for my heart to be in tune with YOUR will for our lives. Amen.
~ Tammie Hefty
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