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8 Questions That Might Keep You Up at Night When You Parent a Child With Complex Medical Needs

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It’s 3 a.m. and I’m tossing and turning, listening to my child breathe through the baby monitor as I have for over 20 years. Many parents have nights when their thoughts keep them from sleeping. When you’re the parent of a child with complex medical needs or a disability, no matter their age, your worries can be numerous. Besides the usual parental concerns about the right school, the right discipline, and your child’s social skills, there are things unique to your child’s diagnosis — in our case that’s Aicardi syndrome.

These are eight questions that might keep you up at night:

1. Are we seeing the right doctor?

There is no doubt the right doctor is crucial to getting the best care for your child, and it’s not always about the most knowledgeable doctor. The most knowledgeable doctor, if they have a terrible bedside manner, is not going to help you and your child. There must be a good relationship between the doctor, child and parent. I like a doctor who will listen to what we have to say and who is able to explain things in terms we can understand. They must communicate clearly, and be willing to do research or consult with others in the field. This evokes a feeling of trust between patient, family and medical practitioner, which I believe is vital when you’re struggling to grasp the enormity of new terms flying toward you. When everything is so new, you try to keep your head clear enough to comprehend volumes of information. An understanding physician is vital to moving past the diagnosis and learning to handle all the demands of a different kind of life.

2. Are we using the right medication?

You might start doing research about your child’s diagnosis and the medications available to treat the conditions that are now part of your every day life. You want answers to your questions and concerns, and you want reassurance.

3. Are we doing all the best therapies?

Starting with Early Intervention and continuing throughout childhood and beyond, therapies might accompany your child’s diagnosis. Every time you hear about a new therapy or a great therapist those middle of the night doubts can creep in. When this happens, look at your child and your unique situation. If what you are doing seems to be working and you’re satisfied with the therapist, you are probably using the best you have found. It’s always good to keep an eye/ear out for what else is available, but you will know if things are going well or not. Trust your instincts. Keep perspective and look at the big picture. Just because something works for one person, doesn’t mean it works for everyone. Sometimes you have to let well enough alone.

4. What if we lose your health insurance?

This is a big one– changing health insurance is not an easy or comfortable thing to go through and can cause countless sleepless nights. Changes in insurance frequently come with a change in doctors and covered services. This is a nightmare for the family of a child with multiple medical needs. How do you condense the years of a complicated medical history into a report that gives an accurate picture of all the medical issues to a new practitioner? You hope the current doctor will be available for the new doctor to consult if necessary, and willing to help you transition by being open to your calling to ask for their input until a new relationship is formed.

5. What if funding is cut?

This is as stressful as losing or changing health insurance. There are programs available that are funded by the government (federal and state), as well as nonprofits. Many nonprofits receive some government funding, and there are of course state agencies that have that same funding source. Rules, availability and eligibility guidelines constantly change. By the time you figure out one program it seems it’s gone or changed in some way. It happens at such a fast pace that frequently your case manager might not be able to answer your question, or may give you an incorrect answer. Thinking about losing your respite, or camp or special equipment funding is stressful indeed. Your child will at the least be disappointed and at worst be in danger for lack of funding for a necessary piece of equipment. Your family would feel the bad effects of losing respite, if you have it. It’s important to try to keep on top of changes by attending informational meetings, fairs or webinars as offered. I’ve found the best way to find out about these events is from other parents.

6. How can we keep things going on such a tight budget?

Finances are another one of those things that can change quickly. Losing a job is the biggest nightmare because not only is there no money coming in, but your health insurance could be gone. Your child still has the same needs so how are you going to pay for their supplies, therapies, medications, doctor visits and meet their needs? Even if there is no change in employment status or insurance, costs rise at a much faster rate than pay. Staying on top of finances can be frustrating and is stressful. It’s one of the biggest worries.

7. What if I get hurt and cannot take care of my child?

This is another disastrous turn of events that is always a real possibility. You try to take care of yourself, but between the actual physical care of your child, advocating for them, holding down a job, caring for other family members and a home, there is very little time for self-care. Even if you manage to carve out time for exercise, a hobby and eat well, accidents happen. You try to have a plan in place for emergencies, but it is still something that will keep you up at night because nobody takes care of your child the way you do. So many nuances of their care cannot be adequately conveyed because the knowledge of what a certain look or sound means is a result of being there 24/7. The most you can do is write everything down and keep it available in an emergency packet.

8. What if my child outlives me? What if I outlive my child?

These two questions go together and are the most haunting for me at 3 a.m. You probably have made arrangements for any eventuality, but those two things are hard to think about. You imagine your child not understanding where you are, being cared for by someone who perhaps doesn’t know what a sound or motion means. Worse, what if the person caring for them doesn’t have the patience you have? Nobody knows her like you do. Those thoughts might run around and around in your mind — it’s upsetting. And the thought of you outliving your child can take your breath away. When they are sick, as you stand by their bed in the middle of the night watching them sleep, or listen to them breathing through the monitor, you wonder, “is this the illness she can’t recover from?” You think you would not be able to go on, you wonder, against your will, how you could possibly ever recover from that event. You may know people who are living with this unimaginable pain. It scares you. It makes for a sleepless night.

These are some of the things that could haunt parents of medically fragile children on sleepless nights. It helps to share them with other parents, write them down, and do what you can to ease your mind.

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Thinkstock photo by: KatarzynaBialasiewicz

Originally published: April 28, 2017
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