The Journey to Rest

Ever feel like a hill will never end? That’s how I have felt for years. It began even before Evan was born.

As time went by, I wondered if Evan was behind…he was so much smaller than others and had so much catching up to do. Fast forward to our nine month checkup and we started the evaluation process for First Steps. We also set up an appointment with a developmental pediatrician when he was about 18 months old. ENT came next with tubes placed when he was 20 (I think?) months old. Neurology came then in April with an MRI in June. Finally, we had a diagnosis. I contacted Family Voices the day after. Applied for the medicaid waiver and waited.

At the interview, the lady talked with us about respite hours that were available to us before the waiver would go through. I didn’t think I needed the help or the hours because Evan doesn’t require much medical involvement.

If you have never applied for the waiver, you are in for a shock. You would think that a child with a disability would immediately qualify and receive extra financial support. To give you an idea, ONE speech session (depending on what was focused on – feeding therapy, oral motor, verbal, etc.) ran about $900 before insurance. And this was only for 45 minutes.

We waited. I e-mailed or called once a month to see where we were on the list. At the time we applied, it was about a nine month wait. We applied in June. In April, I received a letter letting us know we could now apply for the waiver. Apply.

We weren’t finished yet. Thankfully, after talking with a few people, forms were filled out and an interview was set up. Then we waited again.

Almost a year to the date of applying for support, we received his card in the mail informing us that his Medicaid support would start in July and it was retroactive for three months. Three…we had waited twelve.

The waiver not only assists us with therapy costs, it provides a budget that can only be spent on certain things. Respite is one of them.

We picked a company to work with and then hired a few people (some we knew and some college students) who would be trained by the company and then be with Evan so my husband and I can go on a date, or clean house, run errands, go to the doctor, or just have a break.

It has been the best gift. Currently, as I type this, there is a college student downstairs who makes Evan laugh and gives him energy that I just don’t have some days.

It took almost a year and a half before we were able to use these hours. A year and a half.

If you know someone who has a child (especially a child with a disability), check in on them. Ask if you can drop off a meal. Ask if you can bring them a coffee. Ask if they want to take a walk or take a nap and you hang out with their child (if you’re able to due to COVID – we have had a very tight circle because the more exposure puts us at risk of losing precious in-person therapy sessions). Or even just see if they want an adult conversation on the phone or on the porch.

9 thoughts on “The Journey to Rest

  1. “a hill that never ends”… I am sorry, where do you live? I would help if I could. I just started X-country skiing again after many years. We went to a place and initially it was flat, but then there was a hill (I used to love the hill) I went down and fell midway. I was terrified on the next and then the next, but I got thru… by walking my skis and then slowing myself You have kept moving forward and are starting to realize some of the joy in the journey. The system is so cumbersome and I thank God that you are persevering to get that precious therapy. XO

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  2. It is such a relief that you can get care, both for your child and yourself. Yes, we all should be on the lookout as to how to help others who care for those who cannot care for themselves. Caregiving is hard work.

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  3. Oh, what a challenge. I have a friend whose son and daughter went through this process for their daughter. I remember how we all celebrated when they got their support. What is tough is exacerbated b/c of covid. Blessings to all of you and thanks for the tips to the rest of us for ways we can help.

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  4. Yours is an IMPORTANT story to tell. Keep writing. You will help yourself and others. Do not become invisible. Your family – and countless others – MUST be seen and heard. My prayers and thoughts and strength are with you.

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  5. Without filling your own cup you wouldn’t have any energy to take care of anyone or anything. It seems that the system does not consider this and therefore it takes so much time and effort to receive the necessary help. I appreciate that you share your stories with us and make us consider new perspectives.

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  6. I am so sorry for what you have gone through and I am so glad you are writing about it. Folks who don’t have children with special needs have no idea of the hardships so many families encounter. Keep getting your voice out there!

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