By: Mika Hartman
Planning for the future is filled with both excitement and uncertainty. The future holds many variables that complicate the planning process, some within our control and others completely out of it. Hindsight may be 20/20, but when trying to predict the future, you’ll likely encounter numerous forks in the road. Depending on the choices you make, your course can change multiple times. Adulting is hard.
This applies to everyone; however, when you have a disabled child living at home, the necessity of "getting all your ducks in a row" turns every plan upside down. As older parents, we don’t have the luxury of unlimited time, and with the rising cost of living eroding our savings, it's nearly impossible to feel optimistic about the future.
How much money will Hudson need to live a good life after we are gone? Who will step up to be his guardian when we can’t, especially if that situation arises sooner than we expect? How can we ensure that he won’t be placed in a nursing home at 40? Will the government take away his benefits if he inherits too much? What constitutes "too much"? Will his sister be able to live the life she dreams of before she becomes responsible for him? Will she have a better support system than we’ve had? The questions linger on endlessly.
I recently read a heartbreaking article about a mother diagnosed with terminal cancer who took her own life and her disabled son’s life as well. She must have felt utterly unsupported on their journey. Her husband had already passed, and she saw no other option. As a Christian, I understand what the Bible says, but I also empathize with how that mother must have felt. Living in a bubble, it’s clear who truly cares. The harsh reality is that those who show up in person are far fewer than those who simply make a donation or post on social media for awareness. While I am grateful for both, it is not a balanced scale.
When you have only a few friends willing to be present in your life, you start to feel guilty for asking for anything. The fear of driving them away is palpable. Thoughts run through your mind: “Oh gosh, what do they need now?” “Is there another fundraiser?” “Another walk?” “Is there something else they want me to buy?” “Hudson is only six; how much more will they ask?”
As mentioned, Hudson is six. My husband and I have become very skilled at "tag teaming" everything we need or want to do that isn’t for Hudson. We’ve even tasked our 17-year-old with some babysitting responsibilities. Unfortunately, we rarely receive offers to get away. Recently, I asked my best friend to save a future date so my husband and I could attend a wedding out of town. This requires planning, and it’s just for one overnight stay. The thought of planning Hudson’s entire future and well-being is, to say the least, daunting.
All of this is true:
- Down syndrome is beautiful.
- Down syndrome is a gift.
- My son with Down syndrome and autism is a real-life hero.
- Hudson has made me a better person.
- I look forward to seeing everything Hudson accomplishes in life, both big and small.
- We feel honored and blessed to be his parents.
- We laugh every day.
All of this is also true:
- Some days are hard.
- Sometimes we feel lonely and forgotten.
- The future is scary.
- My death is the scariest part.
- No one wants to hear about our challenges.
- Not everyone on this journey is kind.
- We have to ask for help but don’t always receive it.
- The tears aren’t always from joy.
If you’re reading this, I want to say that I love my life and face every challenge with hopeful enthusiasm. My life carries the pressure of needing to succeed because I have no alternative—I must get it right. Hudson depends on me. Some days are easy and well-executed, while others are challenging. Some days are a mix of both. I approach every day with my “momma tried” motto. Whether I meet all challenges with a five-star rating is determined by Hudson, and I would guess the answer is “yes” because of his love for life. Loving this life doesn’t mean I don’t second-guess or overthink everything. I need to do a better job of taking breaks; an occasional day off would be nice. Preparing for the future we wish for Hudson is our responsibility, but his future can improve if his circle is larger—all it takes is EXTRA planning.
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