(Written with Teresa’s grandson)

boyMany of us have had to deal with the fact that we live with pain. We’ve had to accept that our pain has stolen from us: our energy levels, our careers and sometimes family and friends. Over time, we may have figured out how to explain the pain we feel in a hundred different ways depending who we are talking with and whether we are in the midst of a “good” pain day compared to a “bad” one. Think about this. What happens when you have a grandchild who is diagnosed with pain? How do you explain your pain to a child who also lives with pain? It may sound simple, but I am here to tell you that it is heart-breaking and far from simple.

This story is about a Mam-ma living with pain and a grandchild living with pain and the conversations we have had about pain. My grandson calls me Mam-ma instead of Grandma.

It was a rainy day one August. As the thunder clapped and lightning cracked, I sit in the waiting room nervous and scared. You see my daughter was in labor with her second child and it was too early, several weeks too early. I walked back to check on the progress of labor more times than I can remember. Each time I smiled at my daughter and blew her a kiss. My son-in-law never left her side for a second; I was so proud of him.

I was taking another peek into the room to check on things when I saw the nurse with my beautiful grandson. He was so tiny and pale. Wait, something is wrong, I can tell from the way the nurses are gathered around him and whispering. I did not want to upset my daughter who was having some complications after the delivery, so I stood in the corner out of the way watching his tiny body. Oh God, why isn’t he crying? I moved a little closer and could see his chest did not look right—something is very wrong.

Then…without warning, the nurses whisk him away, running down the hall. “Oh, dear God, not again,” is all I could think. My daughter cannot go through this again. You see, a few years earlier on a warm summer day we were all happy and preparing to welcome my first granddaughter. The pregnancy was picture perfect. I was at home getting ready to go to the hospital for the afternoon birth. The phone rang and it was my daughter; she doesn’t sound right, she is asking me to sit down. The next words I hear will haunt me for the rest of my life. The baby was gone, we lost her. I only tell you this part because I want you to understand why when they took my grandson and disappeared behind closed doors my thoughts instantly went back to that day we lost our precious first granddaughter.

I go to my daughter’s side and the doctor comes in and explains that since he was born premature, his lungs are not developed enough, he is having trouble breathing, they have to help him breathe and he has been taken to the NICU (Neonatal Intensive Care Unit). I won’t go in to all the different procedures our precious boy went through; too many is all I will say. The under-developed lungs were not the only issue; he also had a stroke (blood vessel bleed in the brain) from the delivery process.

With each week that passed, things improved; he grew stronger with the help of the wonderful doctors and the NICU angels (the nurses). After 3 weeks in the NICU, he was able to breathe on his own and strong enough to come home.

As the weeks, months and years went by, there were health-related issues that popped up due to the premature birth. He worked with a therapist to help strengthen the side that was weakened by the stroke. He was growing slower than most kids his age but still growing; he was happy and healthy and that is all that mattered.

One day my daughter put him down for a nap. He had learned how to walk and he was getting better and better at balancing himself. Even with the weakness on the one side of his body, he was walking none the less. Then it happened —- He awoke from his nap and let out a blood curdling scream. My daughter ran to him. It was not clear what the problem was. Had he stood up in the crib and fell and bumped his head or did he have a bad dream?

When she picked him up, he let out the blood curdling scream again each time she touched his hip. No redness, no cuts or scratches, no bruises, but there was something very, very wrong. After some testing, it was discovered that he had JRA (Juvenile Rheumatoid Arthritis).

I will never forget the first time I saw him in pain. He was having a pain flare and he wanted his “mam-ma.” There was nothing in this world that could have kept me from going to him, he needed me. I ran (the best I could) up the hill to my daughter’s home which is right behind my house. I walked in and he was in his room. My daughter quietly tried to prepare me for what I was about to see. She had already gone through a couple flares with him and was learning how he dealt with the pain. Before, I did not want to see him in pain so I stayed away until the flares were over. I could not stay away today. He wanted me. My tiny grandson walked in the room, dragging his leg and very unstable on his feet. With each step he took, he whimpered in pain.  I felt like someone had just kicked me in the chest. I had to look away, the tears were coming and I had to stop them. I could not let him see me cry, there was no way I wanted him to feel like he had done something wrong and made me cry.

I took a deep breath and turned back to him. He was smiling at me with that beautiful big smile of his as he struggled to get across the room to me. He tumbled over; I instantly sprang to my feet and ran to him. He looked up at me with such pain in his eyes. Keep it together, I said to myself over and over and over. I gently picked him up and carried him to the rocking chair. He got as comfortable as he could and laid his little head on my chest and we rocked and rocked and rocked for hours. He slept off and on, but the pain would shock him awake and the tears would flow again, so I would sing to him and rock until he was sleeping once again. Then I would sit there and hold him–afraid to move an inch for fear that I would move him in a way to cause pain to awaken him.

He is a tough little guy. Is it because of the hard start he had at birth? Is it because he was poked over and over in the NICU? Did he develop a high pain tolerance in that NICU?

We will never know, but what we see is a fighter. He refuses to let the pain keep him down. He will fight through the pain to be able to do what he wants to do. When he has a pain flare, he lets his parents know and they do what they need to do to ease the pain. It is usually a trip to the doctor’s office or emergency room for medication that helps bring down the swelling and to ease the pain. Once the pain starts to ease off, he is up on his feet and moving again; he may have to go slower than normal, but he doesn’t stay down for long.

He is now old enough that he is starting to understand more about pain. He understands that when he has a flare that Mom will take him to the see the doctor and the doctor will help him. The pain then goes away. He is also at the age where he wants to know why my pain doesn’t go away and not come back. How come the doctors can’t make my pain go away like they do his?

It got me thinking (this is the reason for this article, right?): How does a grandparent relate their pain to their grandchild who has pain? How do you have this conversation with a 7-year-old?

As he gets older, he will be able to understand more and more about pain and one day understand the difference in my pain and his pain. For now though, I will continue to honestly answer his questions when he asks me about my pain.

I try to use his pain experiences to ask him questions that I can use to help him understand the difference in our pain. One question I asked was: Could you tell me what your pain feels like when it is bad? He answered that question by saying, “it is like a really bad stomach ache, but it is in my leg not my stomach.” He relates his pain to what he knows about, like a bad stomach ache, a cut or scratch when he falls down when playing or a big toe bumped on the corner of the bed. I try to explain my pain to him in terms he understands. I relate my back pain to what it feels like after lying on the new hardwood floor at his house and watching television. Why? This relates to a comment he made after he had been lying on that floor: “It’s too hard to lay on it since we don’t have carpet anymore. I don’t like to lay on the floor now because it hurts.”

One time when he saw my feet were swollen, he cleverly compared it to the time he fell down, hit his head and a bump appeared on his head. He told me to be sure not to go to sleep for 220 hours because that is what the doctor told him when his bump swelled on his head. (It is cute when kids try to relate time in hours.)

Pain conversations will continue between us—a little here and a little there. I never talk to him about my pain unless he starts the conversation first. I never want him to feel like I would allow pain to steal his time with me.

Grandparents can learn from each other and our grandchildren will continue to amaze and teach us new things. The old adage “from the mouth of babes” rings true. Do you have grandchildren? Have you tried to explain pain to a child (yours, theirs or that of others)? Have they surprised you with their comments back to you? If so, please share with me your experiences, ideas and suggestions.

If you are a regular reader of the TPC blogs, you may be familiar with our Daily Living blogs. If not, get ready to learn about how it is possible to live a new way of life with pain. I invite all of you to interact with myself and others on the topic of Me and Mam-ma Both have Ouchies by commenting on this article and joining the General Discussion on Pain found in our discussion forums on the TPC website. Signing up to participate in the discussion forums and other features of our online community is easy and free. Register Today!

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