by Carrie Summers
Caring for a child is a hard job; it takes flexibility, consistency, patience, endurance, and love. Caring for a child with special needs adds a whole new layer of challenge to an already hard job. The stress of constantly worrying about your child’s health and well-being can quickly take a hard toll on any caregiver.
Which is why taking care of your own mental health is of paramount importance. We can best care for our children when we’re not overwhelmed and drained.
Our Story: Living with Severe Food Allergies and Intolerances
My sons have a motley crew of food allergies and intolerances. Between them, we deal with Food Protein Induced Enterocolitis Syndrome (FPIES), Milk Protein Intolerance (MPI), and a traditional antibody allergy to egg. I have to vigilantly watch every bite that goes into my children’s mouths—even with non-food things like art supplies and shampoo–to ensure they are not sickened by what they eat. Because we have conflicting dietary needs, I cook two meals for every mealtime from scratch (almost no pre-packaged food is safe for us). Eating out is not an option for us; I’ve yet to find a restaurant that can safely feed both our children.
We carry compounded diphenhydramine (Benadryl) and an Epi-Pen with us wherever we go; our oldest child’s egg allergy can have deadly consequences.
Our youngest son is almost ten months old and has not been able to eat any foods. He survives solely on my breast milk; so far, every formula we’ve ever tried for him has caused him to get sick. Consequently, I eat an incredibly restricted diet: grass fed beef, russet potatoes, carrots, onion, garlic, sea salt, black pepper, olive oil, decaf tea, and stevia. This is safe for him, for now; but it is stressful to know that your milk production is the only thing keeping your baby alive. There is no reprieve from his demands for food, not now, and not in the foreseeable future.
I don’t resent any of it; I know there are far scarier things my children could suffer from. However, food is such a vital part of life…every social activity, every gathering revolves around food in some way. My guard is always up; my stress never really goes down.
It gets tiring, you know?
So these are some things I’ve learned to help deal with the stress, to help make being my children’s caregiver more pleasant and manageable.
Find a “Tribe”
Look online or ask at your doctor’s office, but find other people dealing with the same situation as you (or as close as possible). These other caregivers will understand what you deal with in a way that no one else ever possibly can. I’m not exaggerating when I say that I would be completely lost without the other FPIES parents I’ve met; they don’t disbelieve me the minute I claim my son is having a strange reaction to hand cream. They understand and can offer solutions to problems I’m encountering, and if nothing else, I know I have a group of like-minded parents in my corner offering me support and cheering us on when we have a food victory.
So find people that “get it,” and hold on to them for dear life. Even if you never meet in person and only ever interact online, they will help make your life better.
Find Good Doctors
As much as possible, within the limitations of your finances and insurance plan, find a good doctor. Find a doctor who makes you feel satisfied: that your questions are not being ignored, that your child’s needs are being met, that you are not a nuisance because your child doesn’t fit into a mold which makes you ask so many questions. Find a doctor that will make you feel like you are doing a good job taking care of your child.
If you have to visit ten different specialists to accomplish this, it will be worth the effort. When you realize your child is going to have to go to the ER—again—you will be far less stressed out about that scary proposition if you know your regular doctors will not write you off as a paranoid parent. Good doctors are worth their weight in gold; find the best one for you through whatever means possible.
Reduce Your Circle of Friends and Family
This may sound harsh, but it is sometimes sadly true. There will be people in our lives who do not understand our children’s complex medical needs, who think we are over-exaggerating the dangers they deal with, and who may even sabotage our efforts to keep our children safe.
Eliminate them from your life.
It doesn’t matter who they are—your own mom or dad, your sibling, the best friend you’ve had since first grade—stop calling them. Don’t invite them over. Avoid them at every opportunity.
They are not only a potential threat to your child’s health (and perhaps even your child’s life), but they are a serious drain on your mental health. Having someone you love—who is supposed to love you—constantly second-guessing your decisions and actions will make you start doubting yourself. Even if you can stand firm in your knowledge that you are doing the right thing for your child, having to battle with your family and friends over your actions is exhausting. No one who is caring for a chronically ill child has the energy reserves leftover to fight such ridiculous battles.
Perhaps, as time moves on, your friends and family will come around and become part of your tribe; perhaps they never will. Even if you lose them forever, though, your child’s health and your mental health have to come first. It’s hard to do, but it is necessary.
Remove Perfection from Your Vocabulary
Your house will be messier than you’d like. Laundry may not be done as frequently as it should. The kitchen may not be cleaned to your usual standards (if at all!).
There are enough demands on those of us caring for children who are complex that we have no choice but to prioritize. Those things that are vital to keeping your child healthy and safe are important. Everything else will fall on a sliding scale; some days you will have the energy and time to do some of them, and some days you just will not.
We will not have magazine-ready homes, we will not be able to volunteer for activities in a way we used to, and we may not even have time for a bath on some days! It’s okay. Focus on the priorities, and let go of perfection. Let “good enough” be your mantra.
Accept Help and Take Breaks
While you may find friends and family who are the opposite of supportive and have to be removed from your life, you may be pleasantly surprised to find there are people in your world who were mere acquaintances who begin reaching out to support you. When these acquaintances—or even strangers—reach out to lend a hand, an ear, or in some way offer help, take it. Take any help that is offered to you in any form it comes.
I’ve had friends come by just to socialize with me because they know that meeting for lunch is impossible, and that I get lonely never seeing other adults. I’ve had friends come by to clean my house because they know we just got back from the hospital and are overwhelmed. I’ve had friends simply call to ask if I needed anything at the moment, and sometimes I do. Sometimes I don’t. But the fact that they called makes me feel less alone and replenishes my emotional tank.
Also, take breaks whenever you can. I’m not talking “Mom/Dad’s night out” kind of breaks–those are probably not going to happen, sadly. But if you have a spouse or family member whom you trust, leave him or her to care for your child long enough for you to go to the grocery store—alone. Just getting to drive somewhere without pre-planning every step of your journey, and wandering the grocery store aisles without splitting your attention in three different ways is a welcome reprieve to our highly focused days.
If all else fails, steal ten minutes to go walk around your house a few times. Some fresh air and movement will recharge you enough to hopefully make it possible to get through your day.
Whatever your faith, do it. Pray. Meditate. Repeat mantras. Whatever your belief system, rely on it.
Praying helps connect you, it helps ground you. Praying reminds you of the truth of the world. It can lift your spirits and take the burden of responsibility off your shoulders, because you know you can give that burden to God and He will take it. It’s easy to forget that while WE are the parents of our high-needs children, God is the parent of us all…and He’s a whole lot better at handling stress than we are!
If you can’t do it throughout the day, then make it a priority to pray first thing in the morning and last thing at night.
Our spiritual faith is an important part of our well-being even in normal circumstances; while under the constant stress of caring for a child with complex needs, faith and prayer become invaluable tools in our mental health cabinet.
Remind Yourself that “Love” is a Verb
Love is not an adjective. It’s not descriptive. We don’t say, “I pretty you,” or, “I tall you.” We say, “I love you,” because love is an action.
Every single thing you do for your child is an ACT of LOVE. Whether it is giggling and laughing with them, or holding them while they lay unconscious in the hospital, it is ALL LOVE.
The Bible says that,
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. (1st Corinthians 13:4-7)
Lao Tzu says, “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
We protect our children. We hope for our children. We courageously persevere through untold battles for our children.
Remembering what love is somehow makes me feel stronger and braver, and reminds me of the selflessness involved with living that action. And it gives me the strength to carry on through another day.
So remember, YOU are LOVE.
Take care of yourself, so you can continue to Love your children with every fiber of your being. Don’t let yourself get so drained that you can’t go on; taking care of yourself is, in a very real way, another form of taking care of your child.