• DSN Volunteer Ambre M

Dear Dad

Editorial: Today is Father's Day and for some of us, our fathers are our caregivers. DSN volunteer Ambre shares some deep and vulnerable moments as she interviews her Dad about his caregiver role. Thank you to Ambre and Dad for being so honest and sharing this part of your lives with us.

I decided to do this post a bit differently! I know I having talked about my struggles with my health. I became curious about how they have affected those closest to me. I sat down and talked to my dad because I really wanted to understand how he’s felt through all this.

Author as a baby being held and kissed by her father

He’s been my caregiver for a few years, prior to my fiancé coming into the scene. My dad is my hero. He’s a tough guy construction worker. He’s smart, funny, and a heart of gold. He’s always believed in me. My dad has been absolutely amazing through all this. He’s missed countless days of work to take me to countless doctors appointments, surgeries, and just to help me through the day. My dad’s unfailing strength has been such a blessing. He’s been there to lend me legs, to help me eat, to just listen as a I cry from it all, or from the pain. He’s seen the absolutely worst of this disease, and he has also witnessed the days I am semi okay. So, I wanted to know how he has handled all this and how he’s felt. Prepare the tissues. Without further ado, here is what he had to say: 1) When I first moved down, and my health deteriorated, how did you handle or adjust to that? I was upset and worried. I thought I could fix it. It was very stressful, I just tried to be supportive and help where I could. 2) Have you often felt overwhelmed? If so, how do you deal with it? Every time I access your port, every time we discuss what your doctors say. Lately I feel overwhelmed when you talk about making drastic changes to your life. I worry that you have a hard time now, adding additional things will just make things worse. That is not fair to anyone. 3) Have you ever felt helpless? Being my dad and unable to fight off this monster of a disease. As a Dad, your job is to fix things. I am supposed to make things better for my children. I have to be strong for you and Mathew, it’s what Dad’s do. 4) What is the hardest thing you’ve had to face in becoming my caregiver all over again? The hardest thing for me is to admit I can’t fix this. Sometimes it makes me feel like less of a father. 5) Do you prefer when I shield you from the bad days, or disease progression? Or do you want the truth of how things are? It depends. I want you to be able to come to me if you really need to. I just have a hard time dealing with the constant negativity. It gets exhausting for me sometimes. You need to know I am there for you if you really need me though. I definitely want to know if there is anything I can do to help make it better.– (Author’s Note: i’m not always negative. I do have my days though.) 6) What is your biggest frustration in dealing with my health? Getting you to take care of yourself. Helping keep you positive. Making sure you make good decisions about now and the future. 7) Being a caregiver to your adult daughter, have you ever resented the role? The sacrifices you’ve had to make to take care of me? Of course I have, I am only human. That doesn’t mean I am angry or sad. We are all dealt a hand to play, How we play it is up to us. I have sacrificed everything in the last 5 years for you and Mathew. My wants and desires were not as important as making sure you two were ok. 8) If you could give parents new to the caregiver role any advice, what would it be? All days are not bad. Enjoy what you can. Take the time to get to really know each other. One does not know how strong one is until they have to be strong. 9) If you could tell me anything about how you’ve seen my struggle with my body, what would it be?? You need to take care of yourself better. Exercise more, eat better (more consistently) keep what you have for as long as you can. Your son needs you. 10) Do you know how much I love you, and all you’ve done for me? How your quest strength and your love have given me strength? I know you love me. I do not do what I do for the reward of your love. I do what I do because I can’t imagine doing it any other way. I was raised to take responsibility not shirk it. The love of you and Mathew is a bonus not the reason for my actions. The reason for my actions is my love for you and Mathew.

Author and father next to a Christmas Tree, as a toddler. Both of them are smiling and laughing

Reading his answers made me cry. His overwhelming love and support is immeasurable to me. He does what he does, all he’s done for one simple thing, his love for me, for my son. Parents do what they have to because they love us. They guide us, challenge us, and lead us. They are who help shape us. I am the person I am, because of my dad’s guidance. I’m a stronger person because of his strength and faith in me. My dad is quiet, he doesn’t shower us with affection or pretty words. He’s like a tree. He’s strong, unyielding, and helps us to grow. He’s the roots in my life, in my family.

Whether you’re a parent, or a warrior of a chronic illness, share your emotions. Share how this has been for you. Open that line of communication with each other. Caregiver and patient, you’re a team. You rely on each other, for good or bad. Lean on each other, strengthen each other. Most importantly, love each other. It’s not always negativity, or sadness, or anger. There are days of plateau, days of good and sunshine and energy. Then there are the storm clouds, the thunder and rain of anger and sadness. Don’t lose yourself in the storm clouds. Don’t shut yourself off. Lean on each other. Remember, the sun always shines after the storm.

Follow Ambre's Blog to read more about her journey at My Battle with Dys

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