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When I dreamed about becoming a mom, I never once asked myself the question, “What if my child was chronically ill?”
When we think about becoming parents we think in terms of healthy and whole. We hear, “We don’t care what gender the baby as long as he or she is healthy.” But what if the baby isn’t healthy? What if your child had to spend more time inside hospitals and doctor’s offices than at home?
Nothing can prepare you for parenting a child who is medically complex and whose second home is the hospital. It is the one thing I have struggled for the entire four years of my daughter’s life and I never imagined that this would change the way I parent, but it has and it did.
How Hospital Life Affects Parenting
People talk about exhaustion when you’re a new mom. That “baby-cries-all-night-long-and-I-just-need-to-sleep” exhaustion. But for parents of a chronically ill child, this exhaustion never gets better and it is compounded by stress, worry, and fear.
I stress about my parenting, the way I parent, and if I am doing it right. I worry about the medical decisions I made, the ones I am making, and the ones I will have to make in the future. I fear for my daughter, wondering if she will be safe, wondering if she will ever have a “normal” life.
Exhaustion can make or break you as a person. If you’re a parent you know exactly what I mean. For my family, exhaustion is our constant whether we are in or out of the hospital. It is very hard to be the parent your child needs when you are exhausted. Your guard is down, you’re less likely to be firm and consistent, and it’s easy to resort to irritability or anger.
Most parents feel empathy for their child when they go through hard things. It’s hard to watch your child go through something painful. It’s hard to hold your child down for a medical procedure knowing that it’s for their own good. It’s hard not to take your child’s feelings and feel them as your own.
While I would do anything to take my daughter’s pain as my own, the hardest part of empathy when your second home is the hospital is the urge to spoil her and give her whatever she wants because of it. It can be easy to resort to bribing or buying things to make her happy or make her feel better. It can also be easy to make excuses for bad behavior. While I feel bad and empathize with what she’s going through, it is still my job to parent her, not spoil her and let her do whatever she wants.
Coming to Terms With Parenting a Medically Complex Child
While the “mommy wars” wage on and other moms worry about breastfeeding vs. bottle feeding, natural birth vs. medicated birth, regular snacks vs. organic snacks, and spanking vs. time-outs, my greatest parenting worry is how can I give my daughter the best quality of life right now and in the future?
For Elizabeth, it’s never going to be “just one” hospital stay. For her, it will most likely be a lifetime of hospital stays. Knowing that breaks my heart, but it has also made me stop and think about how I parent her and what I can do to be the parent she needs.
How to Parent a Child Whose Second Home is the Hospital
In order to help with all the unknowns in your child’s life, consistency is key. Trying to be consistent whether you’re at home or the hospital will help your child know and understand (for the most part) what to expect. For us, that means trying to keep bedtimes the same as much as possible, and having the same rules and expectations as at home.
This will not always be easy. Bedtime in a hospital can be difficult due to nurses coming in and out, or the distraction of machines beeping and your child missing their own bed. A possible solution to this is to keep the same bedtime but lay down in the bed with your child until they fall asleep.
Having a rule that your child will not hit or spit at you may be fine until your child is in the hospital and is tired and angry. But you can keep consistency by telling them you understand why they are upset and that it’s okay to be angry, they just do not need to take their anger out on you. If your child receives consequences (time-out, toy taken away, etc) for this at home, then they should receive the same or similar consequences at the hospital. This sets the expectation that your child will not get away with bad behaviors no matter where they are.
While I mentioned above that empathy can affect parenting a child whose second home is the hospital, I also believe it can be a helpful tool for parenting a child with complex medical conditions. In order to understand what my daughter goes through, I must try and put myself in her place.
I’ve had many doctors and nurses ask me, “How would you feel if…?” This helps me think about it from a different perspective. If my daughter needs to meet a certain calorie goal, but she’s not feeling good, do I push her? Not usually, because I know that when I am sick or not feeling well I don’t feel like eating either.
Empathy has helped me to understand how she feels, which in turn gives me direction in how I parent her. It has also helped give me the words to explain things to her and how to know what is age appropriate to tell her and what is not.
Sometimes we as special needs parents are private. We know that people don’t always understand what we go through so we close ourselves off. But what we don’t realize is that sometimes an outside perspective can be the key to helping us get through a tough situation.
You’ve heard the phrase, “It takes a village,” and while I don’t believe that using a village to help raise your child in every single aspect is wise, I do believe that for special needs parents, sometimes it takes a village to help get your child to where they need to be.
Your village may be doctors, nurses, family members, or a few close friends who can offer advice from an outside perspective. While there have been many unhelpful “tips” I’ve received from people trying to be helpful, there have been many more things said that have changed my mind and perspective on how I raise my daughter.
See Also: To my Non-Special Needs Mom Friends
One of the things I’ve had to learn over and over again is acceptance. I’ve had to learn to accept many of my daughter’s medical diagnoses. Some were harder to accept than others. But what I’ve realized is that it’s hard to move forward without acceptance. Not being willing or able to accept your current situation or child’s diagnosis is what holds us back from reaching our and our child’s full potential.
Read that last sentence again. It may be hard to hear it now, but looking back acceptance and moving forward has been the key that has unlocked much great potential in myself and my daughter. Our kids are watching us. They see how we react and they see how we deal with things. What will they see you do?
Once we have learned to accept our child’s situation and diagnosis, then we can move on to normalizing it for the child. This is one I’ve been learning lately and am really having a tough time with. I keep asking why we would want to normalize medical procedures, hospitalizations, and doctor’s appointments?
But I’ve realized that this IS her normal. Her genetic diagnoses aren’t going away, and neither will the doctor’s appointments and hospital stays. If I don’t accept this as normal, then neither will she. Helping my daughter understand that this is her normal and that’s okay will help her grow up accepting her situation and help her advocate for herself better.
In order to parent a child with medically complex needs, you must take time for yourself and care for yourself. I’ve learned that if I don’t take care of me then I can’t take of her. Self-care may look like different things to different people. For me, it means counseling, anti-depressants, chiropractor care, and respite care for my kids. Sometimes it means taking turns watching the kids with my husband so we can sleep in or nap. Whatever it is, whether it’s big or small, find what’s right for you.
Last, but not least, give yourself some grace! None of us are perfect parents. We will make mistakes. But learning from our mistakes, giving ourselves some grace, and moving toward the future is what our children need us to do. You must find what works for you. It’s not going to be what everyone else does. Even the tips in this article might not work, but once you find ways to give yourself grace, you will find the parenting success you seek.
What about YOU?
I get it. Parenting a medically complex child is HARD work. There’s nothing like having to choose between difficult medical decisions and trying to find the one that will help your child the most and there’s nothing like having your second home as the hospital. But if no one has told you yet today, you’re a great mom, you’re a fantastic dad, and you’re doing a great job!
What are your tips for parenting a child whose second home is the hospital?