Parent Caregivers and The Secret War in Holland

There is a beautiful story called Welcome to Holland. It describes finding out that that your newly diagnosed child with a disability won’t be the healthy child you thought you were having. The author compares it to planning a trip to Italy and landing in Holland instead.

It’s a beautiful story meant to give parents hope by explaining to them that even though they prepared for the fast-paced exciting life in Italy and learned the language that they should give Holland a chance. And once they get used to it they will grow to appreciate the beautiful slower-paced life there. This life isn’t what they planned for, expected or wanted, but in time they will grow to see a different kind of beauty. Holland has a unique landscape, tulips, and windmills. Parents landing here unexpectedly will need to adjust to a whole new life, and learn a different language. Holland is not where they thought they would be, but in time they will grow to find happiness and love the life here anyway.

I’ve been living in Holland, and yes, it is beautiful and I am happy, but it is far from perfect here. The beautiful story is only half the picture, and doesn’t really explain the magnitude of exactly how different this life will be.

I’ve been here for over 20 years and I discovered right away that there is a secret war in Holland. It is a war fought by us, the parents of children with disabilities. We must fight all day, every day to get services for our children. We fight to receive funding for medical care, we fight with schools, doctors, insurance companies, and we even fight with other people over handicapped parking spaces. We watch friends bury their children and cry with them grieving their loss while wondering if we’ll be next.

We are literally fighting a war, and many of us have symptoms of PTSD. Living in a war-torn nation doesn’t mean life is always unhappy, but it can be extremely difficult and stressful. People living on the outside don’t see most of this. We are expected to be strong, we need to be strong for our children, and we are strong, so we fight in silence.

Holland is beautiful. I have come to love and appreciate the life here. But sometimes you need to live in a place for awhile to really become a local, and to know the things only locals know and share only with each other. By looking at the beautiful pictures of our children you’d never know about the secret war in Holland.

There are many physical and mental health issues related to being a full-time time caregiver. Especially when you’re the parent of a medically fragile or disabled child. There are no breaks. We are responsible for keeping our children alive and advocating for them. Some of our kids are 100% dependent on us for their survival, they’re fed through tubes, and can require different treatments and need many medications administered throughout the day.

We suffer from many physical problems related to taking care of our children. We are affected by many things that no one can see. Oftentimes we don’t share all these details, even with our close friends or family.

Our own problems get put on a back burner out of necessity because our first priority is to care for our children. This is not ideal but sometimes we simply have no choice.

As our children grow bigger this can compound the physical difficulty of taking care of someone with a disability who is dependent on us for absolutely every need 24 hours a day, 7 days a week for their entire lives.

Insurance companies sometimes refuse to pay for anything that is deemed a convenience item for the caregiver, things like accessible vehicle conversions, or electric lifts for the home. This can results in additional out-of-pocket expenses for the families.

My son is 20 years old and I’d never trade having him alive for anything. But with that being said there are consequences to my own health, physical and mental. This is the side of Holland that others don’t see. The full time caregiver is often on call for the entire life of his or her child. I’m never more than 20 minutes away from my son’s school and get called to pick him up if he’s sick or if anyone in the building is sick.

Living in a constant state of “readiness” is exhausting. I’m ready for anything all the time. There are no breaks from this type of hypervigilant parenting. I’m not complaining, just explaining so people can get a glimpse into our lives and maybe reach out to someone too strong to ever ask for help.

Parents like me can become exhausted, mentally beat down, physically compromised, and tired of fighting for everything. We live beautiful happy lives and are grateful for every moment we have with our children. Sometimes we only share the beautiful moments, the things people expect to see in Holland, but aside from beautiful windmills and tulips there is a secret war going on in Holland. We oftentimes don’t share all those details with anyone.

If you know a family in this situation, regardless of how they appear to be doing, or all the happy pictures they share, they are fighting a war most people don’t even know about. Check on them. They’ll probably say they’re fine and will never ask for help, but I can tell you from personal experience that they’re not always fine. The most helpful things to me are when people don’t ask what I need, they just stop over with coffee or do something thoughtful without asking. They know I’m strong and will likely never reach out for help. Sometimes the strongest people are the ones who need the most help. Parents like me are very accustomed to taking care of everything ourselves it won’t even occur to us that we need help, and we probably won’t ever ask.

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