To the parents of a child living with a chronic disease,
You are either about to embark on or are already on one of the craziest adventures this life will bring you. Raising a child with a chronic disease will test all your limits; spiritually, physically, emotionally and psychologically. You will cry. You will laugh. You will feel depressed. You will feel joy. Sadness will not be far from you, but happiness will be close by. Limits will be pushed. You will face hurdles, but you will find ways to get over them. Some days will be incredibly easy while other days will be extremely difficult. But don’t ever give up. Don’t ever stop being there. Don’t ever stop caring. For your child needs you more than you’ll ever know or comprehend.
Born with gastroparesis and dysmotility of my intestinal tract as well as hyperalgesia, I’ve lived my whole life with a chronic disease. A chronic disease that has rocked my world and taught me a new way to journey on this path we call life. It has worn me down, beat me up and left me bruised and wounded, but I am still fighting because of the two people I call mom and dad. They have been there every step of the way with me and if they hadn’t been there I’m not sure where I would be right now.
My parents have loved me with an unconditional love. I encourage you to show this same love towards your child. A love that never fades whether it’s a bad day or a good day. This love will be the fuel to your child’s fight. It will be the grease to their axles. It will be the glue that holds them together. Some days you’ll need to show your child a tough love. A love that makes them get up. A love that instructs them to continue to take their medications. A love that doesn’t let them miss a treatment. A love that shows them why they need to keep fighting.
The love won’t always be easy to show. There have been countless days where I’ve thrown my parent’s love back in their face. I’ve been frustrated, angry and/or depressed. I don’t want to have anything to do with anyone or anything. I don’t want to do my treatments. And I absolutely do not want anyone telling me I have to do them. But instead of getting upset or angry back at me, instead of yelling at me in return, my parents have patiently loved me and held my hand through the treatments and tests I have endured.
There was one day when I decided I didn’t want to do my treatments anymore. I was sick and tired of feeling sick and tired and I just didn’t care anymore. Who cared if they were keeping me alive, I didn’t feel like doing them anymore so I wasn’t going to do them. Instead of yelling at me and demanding I do my treatments my parents patiently listened to me and held me as I cried. That day I sat on the floor of my room not wanting to talk or engage with anyone. My dad came into my room and instead of arguing with me he just sat silently next to me and said nothing. We sat like that for hours. Me inwardly steaming and he patiently praying. As time passed I felt the anger and frustration seep from my body. Tears began to stream down my face and without saying a word my dad began to rub my back. A slow, comforting rub that made me cry even harder. My tears carried away the last of the bitterness I felt toward my treatment and I resolved to begin it again. My parents never said anything to me that day about needing to do my treatment. Instead they sat with me and supported me through my frustration and sadness. They acknowledged my pain and did the best they could to alleviate it for me. I know if I had not completed my treatment that night, they would’ve shown me tough love and pushed me to complete it, but before they did that they tried to empathize with me and understand where I was coming from. They did this so that I could ultimately come to my own conclusion about doing my treatment instead of them having to force me to do it.
Doctor’s appointments are inevitable. We will have them. Sometimes we’ll have numerous ones in a week or even a day. We need you to be there with us. To advocate for us. To back us up. To support us. Doctor’s appointments can be overwhelming, not just for us, but for you too. But when we go together, we aren’t alone, and are stronger when we have each other. Doctor’s will say many things to us when we’re in there and we need your help to decipher what we’re being told. We need you to back us up when the doctor’s doubt our story, when they’re unable to see our invisible disease. So please don’t stop coming to our appointments, even when we’re over 18 and legally allowed to be by ourselves, please keep coming. Don’t leave us to figure it out on our own, continue to stick with us and support us. Even if we say we’re fine on our own, deep down inside we want you there with us.
Hospitalizations are also part of our lives. We don’t look forward to them and neither will you. However even if it’s your child’s 100th hospitalization and they’re over 18 don’t stop visiting them. I have NEVER spent a day alone in the hospital and that is because my parents have faithfully carved out time each day to see me. To make sure I’m doing okay. To make me smile. To bring sunshine to a dreary hospital room. There have been days where I have yelled at them and told them I don’t want them there, but in reality, deep down inside, I desperately wanted them to stay. I was just so frustrated with everything else going on that I took out my anger on them. And that brings me to my next point.
We will yell at you. We will be so frustrated with life that we will take our anger out on you at some time or another. We don’t want to hurt you. We don’t want to release our anger on you, but we will because we won’t know where to turn. So we may tell you we don’t want you helping us anymore. Or we may proclaim that we think you are stupid because you’ll never know how we truly feel. Or we may shout at you to stop pretending to understand us because no one will be able to understand what we are going through unless they are going through it too. But in the midst of our anger what we want is someone to hold us through our pain. We want to feel loved and wanted. But we are too scared to admit it so we just turn to anger and frustration. So just remember that the anger and frustration isn’t really meant for you, but you’re our easiest scapegoat at the moment.
Minus the outbreaks mentioned above a lot of us internalize our feelings. We pretend we are fine when in reality it feels like our insides are falling apart. We try to push through the pain, the nausea, the dizziness or whatever other symptom we’re experiencing. We try to be brave and put on a good face for the rest of humanity, but on the inside the struggle is so very real. So we need you to come alongside us and ask us how we’re really doing. Don’t just accept okay or good because odds are we probably aren’t okay. But a lot of the time we’re afraid to admit it because we don’t want you or others to look at us with pity or think we’re weak. We don’t want to share our true feelings with others because we don’t want people always picturing us as “the sick one” or “the one whose always complaining about how bad they feel” or “insert some other snide remark.” But as our parents we need you to check in with us from time to time to see how we really are doing deep on the inside. We can’t carry those feelings all the time by ourselves. Sometimes we just need a listening ear. An ear that won’t look down on us once we share our pain, but an ear that will sympathize with us, give us a hug and remind us we are strong, even if we don’t think so at the moment.
There will also be days where we want to and need to be alone. We are tired and worn out from fighting day in and day out. And hence while we need your encouragement and support there will be some days where we’ll need that from a distance. There will be some period of time where we will just need to retreat to our rooms and be alone so we can try to figure life out. And that’s okay that we’re alone for a little bit. Alone time is healthy for everyone.
There will be times where we need extra encouragement to do things, but other times that extra encouragement isn’t helpful because we are truly too tired or worn out to do whatever activity or event you’re encouraging us to do. You’ll need to learn to discern when we just need an extra push in that direction or when we need you to tell our friends that we really can’t do this or that today. Learning to discern the difference between these two things will take time, patience and practice, but you will learn because our sense of security and safety depends on it. We will need you at times to back us up when we are telling others we can’t do this or that. We will also need you at times to encourage us to do something that we are hesitant to do because we are afraid how it will make us feel. But you need to encourage us to take risks at times.
You need to inspire us to live our lives. Our lives will never be normal, but then again who lives a normal life. Don’t let us waste our life feeling sorry for ourselves or refusing to get out of bed to begin a new day. We have a chronic disease, but that doesn’t mean we can’t live a chronically fabulous life. A life full of adventure and yes a life where we take risks so we can say we actually did live. Push us to be better than we think we can be. Take us out to movies, for hikes, to the park, etc. We may not be able to do what all the other kids can do, but we can try to make the best of what we can do and experience life like those other kids. Motivate your child to do things others told them would be impossible. I graduated from college, wrote two books and am going to Physician Assistant (PA) school.
Your journey as a parent with a child with a chronic disease will be extremely wearing on you. You will have to watch your child, your precious child battle for their life day in and day out. You will become exhausted and heart broken. You too will struggle some days. Don’t adopt the mindset that you are impervious to these emotions. Don’t think that you will be able to overcome these feelings on your own, because in reality you won’t. Establish yourself with support groups or at least a friend or two who you know you can turn to when you feel like you are at the bottom of your rope. Because you will feel like that some days. Don’t even try to pretend like you won’t because you’ll just be telling yourself a big fat lie. We are all human. You aren’t impermeable to the feelings that normal humans experience and you won’t be able to avoid the whirlwind of emotions that sometimes will surround you. So make sure you have someone to turn to when you’re hurting too. Don’t ignore or stuff the feelings or you’ll be worse off than before. Plus if you try to bury your feelings it may result in you releasing all those feelings on your child some day and that will be something you’ll end up regretting. So don’t let yourself get to that point. Make sure you have the support you need to push through each day.
We love you. We need you. Please be there for us and don’t give up on us!
Your child who is chronically fabulous
For More Information About Kristen Fox, please email: firstname.lastname@example.org