Courtesy photo

Raising a child with disabilities is both a challenge and a blessing.

The challenges are as individual as the person: some more medical and some more developmental and/or communicational. Some kids with disabilities have more cognitive and social issues that make navigating typical environments a challenge every day.

If you ask parents of kids with disabilities what they fear the most, many — if not all — would say, “the future.” It is the future that keeps us lying awake at night when we really should be sleeping. (Parenting a child with special needs can be exhausting.)

The future is only as far as our worries take us.

I remember the night my infant daughter had her first emergency surgery to relieve the pressure of the fluid that was drowning her brain. I was worried about the next 24 hours and whether she would live through the surgery.

When she made it through that first surgery and was lying in the crib — smiling and cooing — in the PICU, I worried about her surviving the next brain surgery to resect the huge mass that was compressing her brainstem. Would she live or die?

The first five years of my daughter’s life were a tumultuous time of adjusting to parenting four children in the midst of numerous medical crises and trying to educate ourselves on living life with a rare disease. As my daughter grew, the gap between her and typical kids widened and my view of the future expanded — in both hopeful and worrisome ways.

It was hard to plan for the future because sometimes we only had enough energy to plan the hours — and then the days — ahead. I learned strategies of prayer and meditation and embracing a lifestyle that could best be summarized in the old adage which reminds me to take life “one day at a time.”

But I do recall some specifics times when worrisome thoughts of the future went beyond the day and weeks ahead.

One of those experiences happened when my daughter turned 10. For some reason, the double-digit birthday threw me into a panic. One one hand I was celebrating this milestone, on the other, I feared for her future.

Johanna had close to 50 surgeries by that time and was diagnosed with an incurable rare disease. But she was still walking, talking and breathing – mostly on her own – with a little assistance and support from professionals and our family.

We had many miracles which inspired not only us but many others who loved her along this journey of hope.

Still, 10 years old was only three years from being a teenager and a time when most adolescents begin to take some responsibilities for themselves and caring about others.

For me, Jo’s 10th birthday was the time when I had to face that she needed more mobility assistance when we were out in the community. We needed to use either a walker or a wheelchair, depending on the distance and the environment.

It was then that I made the tough decision to get a handicap sticker for the car so we could park closer to our destinations. That sticker was an admission that Jo’s challenges were likely to be with her for the rest of her life. It was a bleak time for me which turned more positive as I made a decision to make her life — and mine — a little bit easier.

Another of those times of facing future fears happened when I was pulling into a parking space at Target. It was a rare situation when my college-aged kids, myself and my youngest were all in the car at the same time.

A van pulled in next to us with a group of older men and women with disabilities accompanied by a few aides. Though they all seemed well-cared for and happy, my heart broke at the thought of my daughter living with someone else besides our family.

My young adult kids noticed the look on my face and my tear-filled eyes as they assured me “Over our dead bodies is Jo ever living in a group home. We’ll figure it out — together.” While we all appreciated the love and concern people take for others and the services available in our local community, it wasn’t the future we wanted for Jo.

I smiled a timid smile and thanked them as we made our way slowly into the store. While I was proud of my kids for stepping up to the plate, I also knew that they had no idea what any of our futures held. We just knew we would “figure it out — together.”

This past week, as I sat in a formative meeting with hundreds of parents and caregivers of adults with disabilities, those fears of the future and frustrations loomed heavily in the room. It was visible on many faces, audible in the words and tones of caregivers as we discussed the theme:  “Who will care for my loved one when I’m gone?”

The presenters didn’t have answers, but the program that hosted the forum was asking for our input to help them advocate for our needs in local and state governing agencies. It was a creative sharing of ideas as well as fears – and both were expressed in an environment of respect.

I was glad that I was there amongst the valiant warriors of my peers – caregivers who appreciate one another’s deepest fears as we admire each others’ strength.

At one point I turned to the older woman sitting next to me as I whispered —  “I have a little prayer I learned from another warrior Mom: Lord, let my daughter live a full and abundant life and let me live just one day more.”

The woman smiled at me and nodded as I continued — “I also wouldn’t mind a few more days to take a carefree vacation before I leave this world.” We chuckled together as if we’d known each other a long time – even though we’d only just met.

Lest you think I only pray and wonder about my daughter’s future care, I plan as much and continue to gather resources to make her life as easy and accessible as we can for the possibility of her living without me.

But when worries of the future threaten to overwhelm and even the “one day at a time” motto fails to steady my heart, I remind myself to lean on the Lord to take the next step.

I have experienced and come to believe this truth in the Apostle Paul’s Letter to the Hebrews 13:8:

“Jesus Christ is the same yesterday, today and forever.”

I know this to be true. Jesus got us through 22 years of trials and blessings. And just as He gives me strength for today, I can trust Him for tomorrow.

Also, this scripture hangs at my front door, to view it when I’m coming home, going out and walking up the stairs:

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future” Jeremiah 29:11-12.

None of us knows what happens tomorrow. I choose to trust in the Lord who gave me strength for yesterday — who gives me courage today — to hold onto to the promise of a future full of hope.

Take life one day at a time and when you find that’s not enough, I encourage you to turn to the one who holds tomorrow in His hands.

The survival of local journalism depends on your support.
We are a small family-owned operation. You rely on us to stay informed, and we depend on you to make our work possible. Just a few dollars can help us continue to bring this important service to our community.
Support RiverheadLOCAL today.

Eileen is a writer, speaker and wellness coach with a bachelor’s degree in theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Email Eileen