One Good Day – Daniel’s story

How much are your memories worth? 

The answer, of course, is that they are priceless. 

We hope to make them every day but everyday life can get in the way. 

Sometimes you need one good day to remember how.

Meet the Osasumwens

There’s Daniel: he is five years old and he is smiling, his eyes bright with the joy of the moment. He’s snuggled on the bed with his big brother David who is 11. The two are close, it’s obvious just to look at them together. They are watching a video of themselves at the zoo on their Mum’s phone.

That Mum is Esther, and she’s smiling too, watching images of a day that was different from all the others. A day that, when remembered, still lifts her spirits. Husband and father Charles can’t join in tonight: he’s working overnight at the hospital as he does most nights. But he was part of that day, a day Esther recalls with a sense of wonder. “We never knew it was possible for us to be happy.”

This is the story of the Osasumwen family, Esther, Charles, David and Daniel, a family built on hard work and love in the face of extraordinary challenges. And it’s the story of one good day that helped them remember who they are: “It reminded us that we’re more than carers,” says Esther. “We’re a family.”

Complex Needs

Imagine if your child was diagnosed with a neurological condition that affects movement, making muscles stiff, weak and difficult to control. Then consider a movement disorder that produces painful, involuntary muscle contractions and twisting. And then there’s a condition where the airway above the vocal cords collapses, affecting your child’s breathing and making eating difficult or impossible. And what if your child fell behind their peers in a range of key skills including verbal and cognitive skills, social and emotional development and daily living skills like feeding, dressing and going to the toilet. 

Any one of these would have a profound effect on your child’s life, on your family and on yourself.

Daniel was diagnosed with all four.

“Being in hospital was very, very difficult for us,” recalls Esther today, the emotion resurfacing. “Every day and every hour there was a different diagnosis. You were still trying to digest one and another one came.”  As she came to terms with the enormity of the challenge, Esther made a defining choice: “Someone just has to be strong for Daniel and that is the person I’ve chosen to be.”

Daniel’s needs shape every aspect of family life. He can’t speak, walk or sit up. He has a PEG tube fitted to deliver nutrition, fluids, and medication directly to his stomach. He is still wearing a nappy and requires round-the-clock care. His range of conditions involve both high muscle tone that can become painfully tight, and low muscle tone in his neck that affects his control. The combination makes medication tricky — what helps one symptom can worsen another.

The most difficult times come when Daniel cries but, unable to express himself, can’t tell his Mum where he hurts. “He cries basically for everything and it can go on for hours,” she says, acknowledging the frustration. The situation is complicated by Daniel’s range of conditions. “The tightness in his muscles could be for excitement or for pain.” says Esther “So when he’s excited he’s tight and when he’s in pain he’s tight. It’s really hard to know when he cries.”

Yet, what strikes you about Daniel is how responsive, lively and happy he seems. Esther marvels at his resilience: a boy who “sees the joy” and whose happiness “radiates” through the family. “We’ve learned to embrace our journey.” she says “And what we do is we try to be grateful for the things Daniel can do.”

There’s a clear line between Esther’s positivity and Daniel’s engaging smile, but she doesn’t pretend it isn’t tough. “Life is hard,” she concedes “I have mental meltdowns. I cry, then I just try to pull myself back up again because I know if I go down, my son will go down, the whole family will go down.”

A trip out for this family is almost always a visit to the hospital. Every outing must be meticulously planned so that Daniel is bathed and dressed in time. His muscle tone means he can’t sit comfortably in a buggy, so he has to move around on a specialist board. If you’re wondering how they do it, Esther’s answer is simple:  “We just keep pushing.”

Sacrifices

Esther’s sacrifice – willingly made – has included her own academic and career ambitions. She holds a Master’s degree in Education and had planned to continue to a doctorate. “I am a career driven person,” she says firmly, “I love to work.” But she has vowed to put Daniel first: “I have dreams, I have things to pursue, but they all have to wait.” 

Money worries add another layer of difficulty. For the journeys to and from hospital they rely on taxis and they don’t come cheap. Charles works night shifts but still helps care for Daniel during the day, leaving him to manage appointments and caregiving while exhausted. “Financially, if you’re a parent of a child with a disability,” Esther says  “it’s never going to be enough. You have to manage with what you have and watch the pennies.” Those pressures are particularly testing in the winter when the family’s costs rise as the temperature falls, “Everything costs money, ” says Esther, who knows that heating and hot water don’t come cheap.

A trip to Edinburgh

Esther and Charles knew they needed a break. They’d never had one before and just didn’t think it was possible. The cost of accommodation and the likelihood that Daniel might be uncomfortable in a new setting meant the idea never went anywhere. Even if they’d done it, Esther points out, they’d have had to use a credit card and it would need to be paid back eventually. 

They decided to apply for a grant from Family Fund to pay for a couple of days away. They were delighted when they heard they’d been successful and opted for a short break in Edinburgh. They stayed in a hotel with facilities that meant everyone could participate, best of all the swimming pool, as well as comfortable spaces where they could be together. And the fact that there would be no bill to pay allowed the family to finally relax.

Daniel loved all of those treats, so many things they’d never been able to share before, but judging by the boys’ smiles when they watched the video back, the highlight was the trip to Edinburgh Zoo and time spent with pelicans, penguins and giraffes.  Daniel was genuinely happy and his older brother David could be a child, not a sibling-carer. 

“The trip gave us a chance just to be a family together,” Esther reflects. “for many families — being together is normal. But it’s not for us.” The chance to swim together was particularly significant because Daniel was in the water with his whole family. “It was” Esther says, glowing at the memory “the first time we were doing something that everyone participated in.”

The impact of the Edinburgh trip for the Osasumwens family cannot be over-stated. The trip shifted something fundamental in how the family sees their future. Before the holiday, happiness felt like something that happened to other people. After it, they were renewed by their own happiness. “Being away from home, it’s like leaving your struggles behind. You come back refreshed, with a new mindset. Like yes, I can go on again.”

One good day can change how you feel about every other day.

For Daniel’s family, one good day brought joy, hope and dignity and it reminded them of who they are. “We are especially grateful to everyone who’s ever donated,” Esther says, speaking directly to the Family Fund supporters who made Edinburgh possible. “You’ve given us a reason to be hopeful and a reason to be happy make lasting memories. We’ll cherish it forever.”

For Daniel, David, Esther and Charles it was a day to smile, share and enjoy family time together.

This winter, your gift could make One Good Day a reality for a child like Daniel – bringing comfort, calm and rest to families who need it most.

Any donation, big or small, can help a child feel safe and settled this winter.