Have you ever noticed that motherhood and guilt often go hand-in-hand? Moms often have guilt that we are spending too much time working and not enough time with the kids. Or we have guilt that we are spending too much time with the kids and not enough time working, providing financially for the family. What about the guilt that we are doing too much around the house and not spending enough time with the kids. Or we are spending too much time with the kids and the house is a complete disaster. I mean the list really could go on and on.
Then there is the guilt about all the genetic “stuff” we have passed on. In my previous post, Lighthouse Keeper, I shared how when I decided to try to get pregnant I did not know I had Ehlers-Danlos Syndrome or dysautonomia but I was diagnosed after I had my second child. So you can imagine the amount of guilt when my son, Jake, was diagnosed with EDS at age three as well as dysautonomia. Then two years later my daughter, Alivia was also diagnosed with both as well.
For a while I carried that guilt around like a weighted blanket. It suppressed my joy, my happiness.
Now I use guilt to propel me forward. I use it to fuel all the different roles I play in doing all that I can to ensure they live the life they want to live but that is another post for another day. By using that guilt in a different way it no longer weighs on me, contributing to my depression. Admittedly that guilt does stir up my anxiety but as soon as that happens I convert into fuel.
In addition to both having Ehlers-Danlos Syndrome and dysautonomia, Jake also has sensory processing disorder, abdominal migraines, hypoglycemia, hypothermia and pronation in his feet and weak ankles that in addition to wearing orthotics he will start wearing braces on his ankles. Alivia also has cyclical vomiting syndrome and a hinge in her spine where she can create an apex in her back which looks like an A-frame. Alivia has had her fair share of other health issues that have at the minimum have taken a hiatus.
As you can imagine they are in and out of Physical Therapy, Occupational Therapy (Jake), Connective Tissue Clinic, GI Clinic, and various other specialists. Jake is also in and out of baseball, flag football, basketball, piano, guitar, drums, horseback riding, and swimming.
Alivia is also in and out of ballet, jazz, lyrical, Sparkle Squad, piano, voice, swimming, horseback riding and art.
While they both manage a lot of chronic pain and health issues they are also engaged learners, active in their various passions including their love of animals and church.
They have built up strong relationships with their friends and of course spend a lot of time with their family. So in many ways there are like any other kid, yet they are also a little bit different.
One day not too long ago I asked Jake and Alivia if I could interview them for Rising Up Strong and they were thrilled to finally participate! I choose to do this interview style so you could get their responses and perspectives straight from them. I interviewed Jake first.
Ashley: “What does it mean to have EDS?”
Jake: “EDS means you put your body in a bad way. It can dislocate a body part.”
Ashley: “How does it make you feel to have EDS?”
Jake: “I get really frustrated. My friends wrestle while playing football when I am not there. It makes them good friends because they don’t do it when I am there, but it makes me sad that I can’t. There are other things that I can’t do like swing from the monkey bars. There are times when I just stand on the sidelines and watch them. I’m always impressed with what they can do! It’s so much fun to watch them! When school started I wasn’t sure how it would be but now I know there are things I can do or I can just watch and it’s still fun!”
Ashley: “How do you cope with having EDS and everything else?”
Jake: “Sometimes I pray at night “please God, help me with EDS. He answered my prayers by bringing my family and friends into my life that help me with managing EDS. My grandparents are encouraging and my teachers are supportive. They say I “rock” all the time which makes me feel good.”
Ashley: “Does it help to know that your sister and I have it?”
Jake: “Yeah, because I can support someone else.”
Ashley: “What is it like to have a mom who has a lot of health issues?”
Jake: “I’m worried about you and there are bad times when you are in pain. Like the time I had to call Brett. I was like “I don’t know what is going to happen?” I felt worried and scared. No one else was home to take care of us. It helped to have Brett rush home. I just needed a little back up there. I didn’t have to stay by you once Brett got home. You were hurting the next day, but right now it’s not bugging you as much. I kinda feel overwhelmed, in the moment, when you are feeling better I’m not as stressed. When you are screaming in pain, when you are calm it’s stopped for a minute, I don’t have to be a child helping. We got you a blanket, stuffed animal, stayed by you and called Brett to come home.”
Ashley: “I am so sorry buddy you have to go thru this especially when I am in really bad shape. I know it is scary when I am like this. I don’t want it to be like this for you or for Ali. When you are worried about me what helps you?”
Jake: “I pray.”
The time Jake had to call Brett was a day when I partially dislocated my left hip so bad I could not walk. I screamed out in pain and when I tried to walk it was so painful I started to cry. Even with all the pain I cope with I rarely cry let alone scream out. So the kids knew I was in bad shape. Jake asked me if he should call Brett and I nodded my head. I ended up crawling to the couch to lay down and then the kids brought me a stuffed dog named “Summer June” they got for me as a gift, covered me with a blanket, Jake sat by my legs until Brett arrived. Jake took the lead on taking care me while Alivia assisted. He has shared this time repeatedly to Brett and me as well as to others.
I interviewed Alivia and here is what she had to say.
Ashley: “What is it like to have EDS?”
Alivia: “It’s kind of frustrating and sad. I am frustrated that I can’t do certain things like backbends and that I have to take a lot of medications.”
Ashley: “How do you cope with having EDS and everything else?”
Alivia: “Sometimes I go up to my room and play or I will dance and sing. I will play with friends or with Jake. They help me when I get hurt. My teacher watches out for me which makes me feel good. My family…you, Brett, dad, Aime, all the grandparents support and take care of me.”
Ashley: “How does God help you?”
Alivia: She touches her heart as she says “He’s in my heart so he is always helping me.”
Ashley: “What is it like to have a mama who has a lot of health issues?”
Alivia: “It’s a bummer because you can’t do a lot of things with Jake and me. And I feel really bad that you can’t eat gluten, dairy or soy. I worry about you but not too much. There have been a few times I was scared like the time you fainted outside. But I knew you were just sleeping, like you weren’t dead or anything. I saw Brett running out of the house with bottle of orange juice and I ran after him. I know what to do when your blood sugar is low: get you juice or anything with sugar. I also will put a blanket on you and sometimes a cold wash cloth. I like taking care of you.”
Ashley: “Oh baby girl. I am so sorry you have to deal with me being sick. I know it can be scary and not fun when I am like this. Thank you for taking such good care of me when I am not doing so good.”
I was diagnosed spring of 2019 with hypoglycemia. Something I have not shared with you about but I will in more detail soon. Unfortunately with hypoglycemia comes with passing out along other symptoms. When my blood sugar tanks it triggers my body temperature to drop as well so I used to become hypothermic. The time that Alivia is talking about is when I thought I had it under control and I was outside raking leaves. Within less than a minute I went from being fine to feeling nauseas and dizzy to passing out. I was able to tell Brett I was not okay before I passed out and he ran into the house to get juice which is when Alivia saw him. She knew something was not right so she ran after him. She has repeated this story time and time again to Brett and me as well as to others.
It is fascinating to me how my kids react to different medical situations. When I passed out in the leaves Alivia went into what I call “nurse” mode and became Brett’s assistant. Anytime I am hypoglycemic she goes into “nurse” mode; however, Jake tends to shut down a bit. I believe this occurs because he too has hypoglycemia which triggers hypothermia so he knows what this feels like. Perhaps he feels it along with me. While I drank orange juice waiting checking my blood sugar, waiting for my blood sugar to rise, Jake sat in the chair on his IPad asking me every five minutes if I was going to die. Now the flip to this is when I am in serious pain Jake takes the lead and Alivia hangs back. Although both cope with pain Jake tends to get his hands on me and tries to make it better.
But you noticed it too? Yeah. Me too. Both of their responses to having a mom with health issues were the longest with memories and emotions. My heart is often heavy my dear readers. I spoke of guilt before. This is proverbial cherry on the guilt sundae.
As a retired therapist the last thing I want is to my kids to become parentified children, which in psychological terms means role reversal when the child becomes the parent and is obligated to act like the parent to their parent and/or siblings. Not only can parentification disrupt development it can lead to a laundry list of psychological issues.
Are there times when kids or teens need to take care of their parents when they are hurt or sick? Of course. Actually, it can be quite beneficial to their development. But when it is chronic illness or pain, well it can easily become more of a daily occurrence. It is something that concerns me greatly. This is one of the many reasons we have had Jake in therapy to help him navigate these very adult topics and then some. Alivia thus far has fared quite well but the door is always open for her to get the help she needs as well I feel assured that because of my awareness and effort to not parentify my kids they may come out of these early years of childhood and adolescences not too scarred.
As I have shared before Jake is my blessing and Alivia is my miracle. God gifted them to the world and the three of them chose me as their mother. They make my life whole. They have made my dreams of becoming a mom a reality. There is something quite remarkable about their empathetic hearts and old souls. I admire their resilience in trying to cope with their own health issues, my health issues and having divorced parents.
With God in their hearts and their family and friends by their sides they will be able to face all that life throws at them.
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