My Story

I am so glad that a JA mom asked for me to share my story, since I know this is important for me to do. To talk about our hurt is difficult, and I will admit that it is a challenge for me. This story that I am going to begin to share was not always easy, but more importantly, I have to remember that even the hard parts of my life are so meaningful and have led me to do the work that I do today. I am able to share my story in hopes of helping others that have a similar story. This story involves something that can be unimaginable to any parent. We only want the very best for our children so that when a parent first hears the words that “your child is sick”, your whole world as you had imagined it, may seem to fall apart.
I will share excerpts on my page from a paper I had written 15 years ago. I tell about some of my experiences as a child with Juvenile Rheumatoid Polyarticular Arthritis. With these posts, I ask for parents or whomever to begin a conversation about these themes. Please share whatever is on your hearts. I will also write up a current update from my professional standing on these posts as well.
1978
There was pain, there was confusion and some anxiety but there was also hope as my small little body lay in the hospital bed. By this point the pain and the screaming had subsided with the aid of medicine. I woke up earlier that morning, screaming from the fierce pain that had struck my whole entire body. Now, if you can imagine, my tiny hand gently lay in my father’s big strong hand. There was comfort in his eyes even though there were tears streaming down his face. I asked him, “Daddy, is it going to hurt a lot?” They were getting ready to draw blood and being only four years old, I did not know what this meant. He told something very important, something that would shape my view on what I’d have to deal with for the rest of my life. He said, “No Mijita, it’s just a little poke, you are going to be just fine.” I believed him, even at four years old. I stayed calm and while they poked a needle in to my arm, I did not cry.
The hospital room where I stayed the next few days seemed cold and sterile. My mom stayed by my bedside and slept on a metal folding chair. There was a boy who shared the hospital room. I do not know the details, but he had somehow managed to cut off his thumb and had to stay in the hospital as it healed. But what stands out in my mind, is that even then, I was able to think about my fortitude. I was able to be thankful that I had my thumbs. They may hurt but I still had them. This thought process, even as a very young child, helped me cope tremendously with all that I would soon come to face.
On that day, with that draw of blood, we would find out something that would change our lives. We found out that I had Polyarticular Juvenile Rheumatoid Arthritis. The memory of the hospital is one of my very first and I honestly do not remember life being any different…only having to deal and live with pain. But, for my family, especially my loving parents, the life as they knew it would change drastically.
Today
So looking back at this now:
I am able to notice a couple of things as we fast forward to the child therapist I am today. Children are very perceptive. In my experience, they often know a lot more than we give them credit for. I wonder about how I saw tears in my father’s eyes but at the same time was comforted by him. One thing, I often try and support parents with is to be honest with our feelings, such as if they see us crying, it is important to not deny your tears. If a parent is crying and a child asks, “mom, why are you crying?”, if mom says “oh, Mommy is not crying”, or “mommy is not sad”, this may confuse the child because they see that you are crying but you say that you are not. They start to learn that crying and being sad is something we should hide or that it is a negative thing. A helpful response to the child, would be “Mommy has tears because Mommy is sad, even mommies can be sad sometimes”. Now in the scenario I shared, I would think that a parent in that situation, that it would make perfect sense for a parent to become tearful. I am sure many parents out there have had similar experiences and sometimes cannot hide their feelings, especially when they see their babies hurt. It is best to be honest and demonstrate a healthy response to real feelings. When we are sad sometimes we cry.
With this being said, another idea came to me as I have been in this setting with patients who are in an exam room getting a shot, and a parent will tell the child,”oh, it won’t hurt at all”. This may not be the best answer since, I have heard in many situations, the child look at their parent after they get a shot and say, “you said that wouldn’t hurt and it did!” This could begin a parent child trust issue. A good response may vary from child to child and setting. But in general, a child does best when they know what to expect. I can honestly say, I have always thought that needles feel like a “little poke” and maybe it was because that was what I expected. This is not always the case for all children. I recall having to use “a magic glove” technique with a young boy where he imagined that I put on a magic glove on him to protect him from the pain, which surprisingly helped. The phlebotomist was thrilled since the child was previously kicking and screaming, throwing things and hiding under tables. Also I truly think that I trusted my father, which helped me to believe him when he said, “you are going to be just fine”. I was then and I still am.
The theme I heard in my story, was that there was a loving parent by my side. I think that their comfort was essential in my entire journey. Looking back, I see myself as a very young child, and I know that a lot of my strength and how I was able to see things, came from them. I know they had a very strong faith and that they were able to instill a sense of gratefulness through my hardship. I know I did not come up with the idea that I was lucky to have thumbs, I am guessing that was something, I heard them say. I think that it is so important to realize whether we have a child that is sick or challenged in any way, that they are very aware and soak up the parent’s ideas and thoughts. We can try and remember that we can help our children by being a positive example, which is not always easy in this situation.

I will continue to share my story and hope that I am able to reach those that may benefit from support. I will try and post weekly.
Sending hugs and lots of gratitude!