What I Tell My Son When He Misses the Old Me Before Chronic Illness

In 2014, I maintained a successful blog and published two children’s books. I lived an extremely active life style. I was a perpetual tourist living in Northern Portugal with my husband Alfredo and our 7-year-old son Hank, and I was pregnant with our daughter Molly. By mid-2015, I was bedridden. 

I had suffered with a bad back for most of my life. For 17 years I had left various doctors in my Midwestern American home town stumped by my condition. I too often heard that I was “unlucky.” I was told I was too heavy, too thin, too weak, too active, not active enough and, and more than once I was accused of drug seeking. I didn’t take it personally, I accepted my bad luck, and I made my life great in spite of my pain.  

When I was pregnant with my daughter, my hips started burning. It only got worse once she was born. Quite suddenly it was almost too difficult to hold my cellphone, let alone my knife and fork at dinner, or the fineliner pens I used in my illustration work. Very soon every step I took felt as if I was walking barefoot on gravel. I developed a pronounced limp, and the burning in my hips traveled to my knees, elbows and shoulders. While I was waiting for numerous tests results to come back, my arms stopped functioning all together. Before I knew what was happening, I heard the doctors tell me I had severe rheumatoid arthritis (RA). Further testing showed that I also had ankylosing spondylitis (AS), both chronic debilitating diseases that would never go away. There I was: a hard working, tenacious, vivacious, working wife and mother living in a foreign country with a 7-year-old and a 4-month-old. What was I going to do?  

“You will not die and that is important.” The Portuguese doctors told me again and again. “You still have time with your children,” they said. All I could think about was my son, Hank. My daughter would always know me with these diseases, but my son would remember the old me, the well me. He and I, we’re a team, completely in sync, we tell each other everything and talk incessantly. I sat on a medieval stone wall outside the hospital where my husband calmly said, “You aren’t fooling anyone by saying you’re fine and you will never fool Hank. We love you and we are all going through this with you so don’t even try and hide your illness. Do what you two do best: talk to each other.”

That was a year ago. This conversation just happened:

Hank: Mama?

Me: (eyes closed, calm, but in pain) Hum?

Hank: You didn’t have a good day?

Me: Um, not the best, (reaching out to take his hand) but my day is great now that you are home.

Hank: (deep sigh) Mama, can we remember things together?

Me: That is my favorite game!

Hank: Can we remember the time before [my sister] Molly?

Me: Best seven years of my life. We had a ball, didn’t we? We didn’t waste a single second.

Hank: We were never home and now we are always home.

Me: We went on an adventure every weekend. We explored and laughed…

Hank: And then you had to stop picking me up from school because the doctors made you stay in bed so Molly wasn’t born early and something was wrong with your walking.

Me: Yes.

Hank: I loved our walks and you taking me to the café.

Me: Me, too.

Hank: (getting teary eyed) And now you can’t do that.

Me: No, I can’t do that yet. That is one of my goals. My goal is to be well enough to fetch you from school and the doctors and I are doing everything we can to make that happen. And maybe I will need some tools.

Hank: Tools?

Me: I may need a walker or a wheelchair. Does that scare you?

Hank: (nodding)

Me: Do pencils scare you? Do screwdrivers scare you, or drills or shovels or knives and forks? Because that is all a walker or a wheelchair are, they are just tools to help my mobility.

Hank: That is true. I didn’t think of that. They can help you because of your walking being bad.

Me: Yes and also because of my energy. These diseases mean that I am like a car with only 20 percent gas in the tank, no matter what, every day. And when that gas runs out I don’t get any more until maybe the next day or the day after. If the doctor decides I need some tools I will take them, because I am getting rather annoyed at being in the house all the time.

Hank: I miss you [being] outside, mama.

Me: (squeezing his hand) It wasn’t anyone’s fault. These diseases always lived in my body. It wasn’t because of anything I did or didn’t do and it wasn’t because of you or Molly. It just is. Life isn’t always fair, but no one can ever say I took my life, our lives, for granted! No one. We lived those seven years before I got sick to the max! And we are going to have a boat load of adventures. This isn’t the end, Hank. I know it is hard. Trust me, I know how hard it is to have a sick mama. And I am doing everything I can to be as well as possible.

Hank: But you will never get better.

Me: Not true. I will get better at balance and using tools to help me and asking for help and I will get better at treating my RA and AS. I will get better at being your mama, everyday, just like you will get better at being my best kid. Life isn’t easy…

Hank: (coming up for air) But it’s worth it. I just miss…

Me: (crying) Me? You miss me? The well me?

Hank: (nodding)

Me: I miss that me, too. So very much. But no one can ever say I didn’t live my well life to the fullest. Because I did and I am also living this new life as well as I can and you are a big part of that. (crying into his crown of blond hair) Thank you, Hank.

Hank: I am so sorry you’re sick.

Me: Me too, darlin’ but this is the way of things and we will find our feet, set goals and meet them and it is perfectly fine to be sad and scared, but it is not fine to be sad and scared without talking about it. You cannot keep that sadness deep inside. That is like having a broken heart and not fixing it. You have to punch fear in the face and talk about your feelings. Just like now.

Hank: (tears pouring down his cheeks) I couldn’t hold it in any more. You are here and you hurt and I can see it… I can feel it and when you hurt I hurt. I want to help you, but there is nothing I can do.

Me: There are a million things you do to help me, but the most important one is to talk to me. You need to tell me about your feelings. You need to let me help you punch fear in the face. You need to tell me about your day.

Hank: Last night do you want to know what I dreamed? Last night I dreamed you weren’t sick, that you were all better and that it was the last day of school and you came to pick me up from school and it was ferias (vacation) and it was my very best day ever.

Me: That is my dream, too. That is my very best day ever.

 We have had a number of conversations like this one over the past year and every single one of them tears at the stitches holding together my broken heart — the parts that are still healing on account of my RA and AS. I don’t think I have ever been more frightened or intimidated than the day we told Hank about my diagnosis in the car on a long drive while his baby sister slept. Having a conversation that scares you, especially one you know will scare you child, is not easy, but we need to have them, because my husband was right, when you are chronically ill you cannot fool those who truly love you. My family cannot feel my physical pain but yet my being in pain hurts them and they suffer in their own ways from my diseases. To deny or downplay the truth would be to deny something we all experience differently but as a whole.  

My son’s heart breaks every time he sees me wince, fight, struggle, not get out of bed, limp, rage and probably a hundred other ways to which I am oblivious, and it is only through honest, supportive, reassuring conversation that I can be Hank’s best mother.  

My advice to any parent dealing with chronic illness, disease or disability is simply to talk about it. The best questions teach you more than you could learn otherwise and for me that is what life is all about: to learn. I am living with a two chronic debilitating diseases, but so is my family and we all have days when we cry, but we have far more days when we laugh hysterically.  

I refuse to live my life as a sick person. I am merely a person: an artist, author, blogger, wife and mother managing illness and life and shopping lists and swim practice and a career and by living openly and honestly we grieve, achieve, adapt and celebrate together, because life isn’t always easy, but it is worth it.

Follow this journey on Conversations With Hank.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*