Learning How to Sail

Never Say Never.

Such a tiresome cliche, but that's the thing with those old sayings, they didn't become cliches without being true. Over the past year, our family has relearned this truth over and over. Yet, the past 2 weeks we have been hit upside the heads with the humble stick.

If you remember, we are in the process of starting therapy for Caroline. She has gone through all 4 therapy evaluations and now we wait on the therapists to complete their reports and then we will meet with our Early Intervention coordinator to choose how much and what type of therapy we want. Now, there's someone I never thought I would be dealing with- an Early Intervention specialist with DHS. When I was first contacted by the therapy center, I was informed we would have to go through DHS since Caroline is younger than 2 years old. "It's just protocol" she said. I was immediately uncomfortable with the idea. Though I told myself "I'm not an elitist" (though I discovered that yes, just call a spade a spade, I am a snob) I didn't feel we were "DHS material." I reasoned those services were for those less fortunate, bless their hearts. Then, I was educated. I met with the coordinator and learned about DHS and their services. Then, I met with each therapist. Though the coordinator had suggested applying for TEFRA- an extension of Medicaid for disabled children- I brushed it off. We had been hearing the TEFRA speech from ACH since before Caroline was even born. I said to myself, "well that's not Caroline, disabled...that's not our situation...we have private insurance."
Then, I met with the physical therapist. She played with Caroline and completed her evaluation and then asked me, "have y'all looked into TEFRA?" I said yes, which wasn't a lie, but that we had private insurance and had already met our in-network and out-of-network deductibles- a really twisted sort of brag now that I think about it. Anyway, she nodded and explained that our private insurance does not cover any type of therapy for "children with disabilities." That sort of knocked me over. We had been sitting on the floor with Caroline and I rocked forward and said, "not even with all of her diagnoses?" "No, sadly they will not pay. Now, if she were an adult and had a stroke or car accident and needed therapy, they would, but your insurance company does not pay for therapy for children." She went on to state that Caroline is "severely delayed" and would need more therapy than DHS would cover.  Later that evening, Josh and I were going over the numbers. There was no way we could afford therapy on our own. So, here we are doing what we said we would never do- pouring over the application for TEFRA. Medicaid for disabled children. I don't like it. I don't like the terminology or the connotation, but I am learning in order to make it on this crazy ride, you have to use what you are given.

Caroline may be "severely delayed" right now, but I have promised her that we will do everything we can to ensure she won't be for long. No matter what, Caroline won't be defined by a diagnosis or disability. She is our mighty girl and will be defined by her infectious laugh, tight hugs, and big kisses.

Sometimes it feels as if life is just tossing you back and forth like a little ship on the high sea. Have you ever been on a boat in a storm? It's scary and unpredictable. I'm all for boating but I want smooth-as-glass waters and sunshine. Being Caroline's mom has been a blessing because it is teaching me how to sail in any weather and put trust in the Captain who knows how to navigate the waves. Now, our family is in the middle of another storm. Josh's dad was recently diagnosed with advanced, Non-Hodgkins Lymphoma. The type he has, follicular, is treatable but not curable, yet. We have been reading and learning a lot in these past 2 weeks about sailing this particular ship. We have learned about bone marrow biopsies, PET scans, and chemotherapy. We don't like it. We hate it, but we know our Captain is good and He will provide the resources we need to sail this ship.

Life can change in a phone call. Never say never. Be kinder than necessary. Love each other hard.