Fractured Fairy Tale: The Story of Finley’s House

By • 3 years ago with one reply

Lend me your imagination, if only for a few minutes.

Imagine a 20 year old man and an 18 year old woman meet at a church camp. They really hit it off, but are separated when the camp ends and they lose contact with each other. Imagine they find each other again in Bedford, England, after 3 years while the young woman is doing volunteer work with a church.

Is it fate? Kismet? Serendipity? Simple, blind luck? It doesn’t matter. All that matters is that they’ve found each other again. And this time they don’t let go.

It sounds like a fairy tale, or the plot of a beautiful movie about separated lovers, but this is real life for Matt and Heather Sweetman. They fell deeply in love, made a home in Chicago, and had four children. If this were a movie, this is where the ending credits would scroll on the screen, the music would rise in volume and tone, and the audience would depart the theater with smiles on their faces and their hearts full of love.

This isn’t a movie, however, and sometimes real life can be…well, real.

Meet Finley

Eight years ago Matt and Heather began a family together, eventually having 2 boys and 2 girls. This happened to be their magic number, as they said that “3 was too few and 5 was too many! With 4 everyone has a buddy! No third wheels.” First came Jones, then another son named Macrae. Following on their heels were two girls, Paisley and Finley.

First time parents will closely monitor their children, hyperaware of any little sneeze, cough, or delay in meeting their milestones. The more children that parents have, the more they relax, knowing what to watch for and what to expect. Because of this comfort Heather could quickly tell that something was going on with young Finley’s development at around 4 months. By 6 months Finley still hadn’t hit important development milestones, and so Heather and Matt, based on a recommendation from their doctor, enrolled Finley in an Early Intervention Physical Therapy program made for children aged 0-3 years. After finally seeing a physiatrist, Finley was diagnosed with quadriplegic cerebral palsy.

You may have heard of the disorder, but if you do not know the particulars, cerebral palsy usually appears in infancy or early childhood and has an adverse effect on the movements and coordination of muscle groups in the body due to damage or abnormalities in the brain. In the case of quadriplegic cerebral palsy the lack of muscle coordination in the arms and legs of a child mimic quadriplegia, causing the limbs to appear stiff and make it difficult for a child to walk, crawl, or even sit up.

Real life intervened in the Sweetman fairy tale. That, however, doesn’t mean our movie soundtrack is taking a tragic musical turn.

Strength in Numbers

When a big change hits a family it can either split them apart at the seams through stress and pain, or it can bring them closer together through the bonds of unconditional love. Heather, Matt, and their children have been strengthened by their “strong faith, a good community of friends and therapists, and taking things one day at a time.” They have also worked on their communication with each other.

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“We talk a lot about what is going on, emotionally. We are almost daily processing through various emotions from sadness to anger to delight in this precious girl… We have tried not to hide our grief but to be real and honest and open. As a result our faith, marriage and family are stronger for it.”

Heather’s strength is needed daily as she serves as a stay-at-home mom for all her children and caretaker for young Finley.

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“Caring for a special needs child has been quite a challenge both physically and emotionally. Despite the great challenge I honestly don’t want to be doing anything else. I had a mom who chose to stay at home while me and my brothers were little and it made such a difference in my life. I want to be that for all my kids. Transitioning to taking care of a special needs child is like grieving the death of a close family member. As a parent you expect your child to grow normally. Your greatest desire is for them to be healthy and strong. When this doesn’t happen you have to start facing the reality that reasonable expectations will not be met. The future has a giant question mark hanging over it and this can all be hugely overwhelming. I have had to learn (and still learning) to live day by day, and some days choosing to live hour to hour. Choosing not to worry about the future is a daily battle but it has helped me be more present and enjoy this life we have been given.”

Having a strong bond will not protect a family from the slings and arrows of outrageous fortune, it can keep them grounded and able to deal with the strain. And it can also help them find an opportunity where one may not be evident.

Creating Art for an Accessible Home

As Heather said before, having a special needs child creates a unique set of challenges. Since Finley has a difficult time getting around, the Sweetman family want to make their home more accessible for her. It is, unfortunately, an expensive endeavor. Matt and Heather found an answer to help them create a second source of income. They have opened a Zazzle store and are now selling beautifully designed prints with inspirational messages on them for Father’s Day. Their ideation process is simple: “We find phenomenal photographs that we can buy the rights to or have open rights. Then we write unique messages that we have not seen before.” The messages are stunning in their power. The need for these messages is what drove Heather and Matt to create them in the first place.

“We felt like there is a gap in the market for words that show respect and honor to men, especially fathers.”

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As the tale goes on for the Sweetman family, you can be a part of helping them write a fantastic chapter about their new accessible house for Finley. Check out their store to find all of their wonderful designs!

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