How families with special-needs children endure the war - opinion

When a child is injured or falls ill, the lives of the people surrounding him or her change forever. Time stands still and the clock starts ticking in scares and anxieties. We pray. We hug each other. We hope for the best.

We know that we are the lucky ones. We have access to very good healthcare in Israel. Our knowledge, skill, and devotion help even very sick children to cope with the most threatening circumstances. We do everything possible so that our precious children continue to live, our babies survive, and their small hearts keep beating.

Sometimes success comes at a price. Life doesn’t always return to what it used to be.

We, the rehabilitation specialists, assure the exhausted family that everything is still possible: travel, pleasure, studies. Don’t give up, we say. There is indeed a future to look forward to. The world is your oyster. That promised future, though, may now involve a walker or a wheelchair.

Suddenly it’s necessary to ensure that pavements are accessible. That the school has a lift. People stare at the child because they are different. Some gaze with pity. Some with disdain. Life becomes a series of encounters. Each one takes a toll. At the end of the day, no one understands quite as much as you do what your baby needs. The stand-in doctor certainly does not. The dour faced taxi driver even less so.

Gradually the family starts to create a new routine. The home is adjusted to the new situation: doorways are expanded. A ramp is built to bypass the stairs. A supportive educational framework is sought, and therapists are located for the absolute best care. You even find the right emotional support group for the siblings. One of the parents has to change jobs so they can come home earlier and help.

Slowly, life begins to settle into familiarity.

Families loose all sense of familiarity 

And then, just as the first rays of sunshine can be seen through the clouds… war. Suddenly Dad is called away on reserve duty, and Mom is alone. Alone with three kids, one of whom is disabled. The Kindergarten is closed. The air raid sirens sound. And you’ve just used the last of the epilepsy medication. And what about the appointment with the expert for which you waited four months already which just got canceled because your dedicated pediatric neurologist is somewhere in a bulletproof vest applying tourniquets to soldiers on the frontlines?

Sirens sound in waves. You hear explosions. The older daughter cries. The middle starts to bed-wet again. The littlest, who’s been through so much already, is the only one whose face breaks into the sweetest smile because from her point of view, her mother’s right here with her, which means everything’s fine.

And then you’re told you need to evacuate, because your house is in a war zone. Your home, your safe haven, the place you cherish, where every picture and every cushion are positioned just so. Upheaval: everything shifts yet again. Now the family, your possessions, your medicines, your carefully constructed daily routine, your embracing framework, the remainder of your sanity, need to be gathered and packed in a suitcase, and you set out into the unknown.

 You are allocated a room in a pleasant hotel, and you’re being received warmly, with so much empathy. The room might in other circumstances have been part of a romantic dream vacation, with beautiful scenery and enhanced by indulgent buffets. But what would certainly have felt like pampering in other times suddenly becomes a new nightmare.

The hotel room is clearly unsuited to an entire family whose nerves are on edge. It’s small, meant for people who spend most of their time sightseeing or at the pool. The noise in the corridor prevents your special needs child from napping and completely upends the routine which you put together step by difficult step. The room is neither comfortable for a five-year-old who has recommenced bed wetting, nor for a tween who absolutely must chat with her friends with the door to her room shut.

But more than all those aspects, the room simply isn’t built for a child whose every element in life has been professionally and precisely adapted to account for special needs.

The hotel room does not have an adjustable bed, there’s no specially adapted chair for mealtimes, nor a kitchen for preparing food with the right consistency. There aren’t enough wall plugs to charge the various electrical devices vital to that child’s life: oxygen saturation meter, feeding pump, ventilator. As you seek a way to integrate this new temporary mode of existence, you’re simultaneously seeking ways to hide the horrific images blaring on the TV screen and TikTok from the older children.

You’re also pummeled by advice and suggestions on social networks and news channels. Pretty words like resilience, routine, reinforcement, support. There’s talk of togetherness and being victorious. But your thoughts are full of concern: Where’s your partner? Is he cold? Did you remember to give your little girl her evening medication? Is it terrible if the kids don’t shower again tonight? How much strength you need not to cry.

Your count your small victories: you found time to read your child a story before bed. Your resilience is a bit of time out for yourself to dye your hair. As for routine… pointless to even mention it. You wake in the middle of the night, flooded by thoughts, and know that you won’t be getting any more sleep: It’s now two weeks without the rehabilitative therapies your little girl needs.

Every step forward was purchased with so much hard work: is it all going down the drain? What about the canceled appointment: should I look for a different doctor? Start the tests in a different clinic? Integrate my little girl into a new educational framework?  You feel the tears threatening to flood.

Tomorrow is a new day, and how are you going to cope without help? The wonderful volunteers who knock at your door don’t know, sadly, how to look after your little one, with her very special needs. Everything, absolutely everything, from A to Z, is on your shoulders.

No respite. Your conscience is hammering away at you. Really! What sort of mother are you? To what kind of world are your children being exposed? Those pangs of conscience clammer on with increasing force.

No one’s able to tell you how long this will go on. Nor is it possible to plan anything. All the dreams of travel, studies, and life: none are valid any longer. They’re all locked away until further notice. You cry again.

You’re woken in the morning, barely able to open your eyes, by a phone call. Your partner. He’s on his way to spend Shabbat with you. In a corner of the room your tween is building a tower with your five-year-old. A breeze flows through the open window: that fresh scent of rain. Your special girl suddenly calls out “Ima” and it’s the first time since her illness began that you’ve heard her say that, intentionally, knowingly, a huge smile on her face.

And despite its ups and downs, you think: how strong life is.

It is much stronger than us.

The writer, a pediatrician, is director of ALYN Hospital.