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What I Have Learned About Communication and Care After My Son's Nine Surgeries

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As parents of children with disabilities, we hear all the time how important it is that we take care of ourselves. Our children need us, and we have to be at our best. What was always difficult for me, and still is quite frankly, is taking care of myself when my son is facing difficult procedures. I feel guilty thinking of myself during such a difficult time for my child, and I feel like everything has to come second to my child. If you can relate, there is nothing wrong with feeling this way. Our children are our whole world. But if you are like me, burying your emotions only makes dealing with them later that much worse. Here are some things I have learned along the way.

1. It is OK to be angry. My son is going into his 10th surgery next week, and to be honest, I am furious. Not at my son, of course, but I am angry he has to endure this again. I always felt so bad to be angry because I felt like it was wrong to be mad at the situation. Through therapy, I have learned what I am feeling is completely normal, and in no way does my anger at the situation mean I am angry with my little boy.

2. Take time for yourself. There has been so many times during my child’s numerous procedures that I have turned down help from medical staff and family. Only now do I realize how important is to accept help when it is offered. I personally felt like no one can care for him as well as I can, but how can I be at my best if I am going days without sleep? The reality is, the medical professionals can and will do the best for your child. Your family will also do their best and love your child as you do. Take the help. Catch your breath. You and your child will be better off for it.

3. Cry when you need to. I know how strong we parents are. We are warriors just like our children. We have spent hours learning medical terminology. We have slept sitting upright in hospital waiting rooms. We fight for the best medical care for our children, and we battle insurance companies almost daily. But you don’t need to be strong all the time! I personally refused to let medical professionals and my husband see me cry. I didn’t want anyone to see how devastated I was, and I was afraid of how others may feel if they saw me cry. I thought I had to be the rock in the battle. Please know that crying doesn’t make you look weak. You are only human. My advice — cry hard and cry as much as you need to. If you let that go, you can feel so much better for it.

4. Eat well and exercise. I know this is advice you have heard before, but it is so important. I refuse to leave my son’s bedside or to leave the OR waiting room when he is in surgery. That meant there were many times I went without eating. In the heat of the moment, food is the last thing on your mind, but your body needs fuel to keep going. I’ve learned to pack food for myself so I don’t need to leave my son’s side for a second. Exercise is a great way to shake off emotional stress. Please accept help when it is offered and go take a walk. When I return to my child with a clear head, I’m ready to handle any challenges that may arise.

5. Talk to your partner. Sure, it is easier to go through the motions than it is to have difficult conversations about your feelings and your child’s health, but these conversations are absolutely necessary. My husband and I used to avoid these conversations at all costs, and it wasn’t good for us. Now that we have these conversations and have them often, we understand each other so much better. We understand what each of us needs from each other now, and we are a better team for our child because of it. Communication is key.

6. Do something nice for your partner during the tough times. I understand you are exhausted, but so is your partner. It’s so important that you both work together as a team for your child. You don’t need to do anything extravagant. Something as easy as running the sweeper, doing the dishes, or letting your partner sleep a few extra hours can really boost a person’s spirits. I remember a time when my husband not only let me sleep in, but I woke up to breakfast in bed. I was so stunned and so exhausted that I just started crying! But after breakfast, I was ready to go for the day. Just a simple act of kindness and understanding can make a world of difference for your partner!

7. Make recovery fun. Our children are fighting such big, grown-up battles. Try to improve the atmosphere by creating a fun environment. Sing. Dance. Laugh. Listen to Christmas music in July. Stay in your pajamas and build that blanket fort in the living room to watch Disney movies in. This will not only create a happy environment for your family, but it may even help your child forget, if only for a moment, that they are recovering from another procedure.

8. Get out of the house when your child is ready. When our child was a few weeks into his recovery from hip surgery, we all definitely had cabin fever. As soon as he felt up to it, I loaded him up in his wheelchair and went for a walk around the block. He was so nervous that people would stare at him in his body cast, but thankfully we had amazing neighbors who were all just so happy to see him. This became a daily routine, and it really helped to make those six weeks in the body cast fly by.

9. Make alone time for your other children. While they are not going through the same medical battles physically, they are going through all of the emotional battles. Take the time to make them feel special and answer any questions they may have. Let them help you care for their brother or sister who is recovering from a procedure. And when your child is doing better, take your other children out to a movie or out to lunch. During these medical battles, the siblings may need to be reassured they are not being lost in the shuffle.

If you have a child like we do with a very rare condition, it is so easy to feel overwhelmed. I’ve been there. I am still there. Our child will likely face numerous more procedures and therapies over the coming years. My husband and I will still have to work hard to make sure we are communicating properly not only for our child, but for our marriage, too. As parents, we need to make sure all three of our children are making it through these procedures with a happy heart. These few tricks I have learned along the way have made a huge difference for us in our experience with Schwartz-Jampel syndrome. I hope they help you, too.

The author with her husband and three children

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Originally published: September 23, 2017
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