Me: (sitting on the couch, eyes closed, suffering)
Molly: Maaaama? (patting my leg)
Me: Yes, MaGoo? (cracking one eye open)
Molly: (giggling) Maaaa ma!
Me: (pulling her up into my lap, wincing)
Me: What is Princess Sofia up to? (voice cracking from discomfort)
Papa: Amália, quer venha aqui fora comigo e ajudar as plantas da varanda? (Molly, do you want to go outside and help me with the veranda plants?)
Molly: Yah? (arms up)
Pai: (picking up the baby, turning off the TV, leaving the room)
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 Molly?
Me: Best seven years of my life.
Hank: I love Amália, and when you told me and showed me her picture I thought you were kidding because you said you had baby fever.
Me: (smiling) I remember.
Hank: And I was so excited I cried. I was so happy and I am happy and I love her, but sometimes I like to remember the time before.
Me: 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: (cracking an eye open) We went on an adventure every weekend. We explored and laughed…
Hank: And ate cakes at every café. Remember when we went to Marvão?
Me: That was our last trip I think before Molly was born.
Hank: And then we went to your book being published party?
Me: (smiling and nodding)
Hank: And then you had to stop picking me up from school because the doctors made you stay in bed so Amália wasn’t born early and something was wrong with your walking.
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.
Me: I may need a walker or a wheel chair.
Hank: (tears falling silently from his eyes)
Me: Does that scare you?
Me: Do pencils scare you?
Hank: (raised eyebrow)
Me: Do screwdrivers scare you, or drills or shovels or knives and forks? Because that is all a walker or a wheel chair 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% gas in the tank, no matter what, everyday. 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: (crying) I miss you outside, mama.
Me: (crying too) Me, too. I miss so many things. I don’t want to miss the mimosa trees blooming.
Hank: They aren’t yet. I will tell you and we can walk there together slowly. I know you love those trees.
Me: I do, indeed, so I am working very hard to get back to as close as where I was before I got sick.
Hank: But… (pause)
Me: You can ask me anything.
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 sever years before I got sick to the max!
Hank: (smiling through tears)
Me: We moved to Portugal. We learned Portuguese.
Hank: You are still learning, but you are getting better.
Me: And we are going to have a boat load of adventures. This isn’t the end, Hank. I know it is hard. (loosing it a bit) Trust me, I know how hard it is to have a sick mama.
Hank: (hugging my arm as tight as he can, crying)
Me: And I am doing everything I can to be as well as possible.
Hank: (into my arm) 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 (rheumatoid arthritis and ankylosing spondylitis) . 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?
Me: (just a mess of tears) 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: (sobbing) I am so sorry you’re sick.
Me: (rubbing his back) 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.
Me: (biting the insides of my cheeks to not completely loose it)
Hank: I want to help you, but there is nothing I can do.
Me: (wiping his tears away) 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?
Me: (wiping my heart on my sleeve like a big red stain) Spill.
Hank: 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: (sobbing) That is my dream, too. That is my very best day ever.
Hank: But it was only a dream. (sobbing)
Epilogue: We just sat and cried. I couldn’t say anything else after that. Pai and Molly came back in and we all had dinner and we are still talking and dealing but I decided to let that hurt stay for a while, because it is true. It is all true. For now, being well is only a dream and the truth hurts. We don’t know the future. We have hope, but we need to sit with this truth, live with it, not deny it, and morn what we’ve lost. It’s not easy to be in pain. It is exhausting to be in pain all the time, to be ill, to parent ill, but I refuse to live my life as a sick person. I am not a sick person. I am a person managing an illness… for as long as I live. And that hurts us all to the core.
There is no happy ending to the conversation, but we still choose happiness on a daily basis, just not today…. Not today.