“ Sometimes I feel sad, when I pray for Zoe, I pray that she can do more things”-
Olivia wrote this recently as part of a homework assignment. She will be 9 soon, and is beginning to realize there are many things that Zoe may never do..walk unassisted, ride a bike, a scooter. We have a diagnosis that Zoe will continue to lose her vision, leading to a complete vision loss. And although Zoe is learning Braille now, we don’t dwell on that eventuality.
I never knew that Olivia believed Zoe would develop these abilities in time. Zoe is 7 now, and it never occurred to me that Olivia was waiting for these things to happen. And to her Zoe is just Zoe. But it makes sense, kids watch kids grow up and watch them gain skills as they get older. And that’s what kids remember, how they have grown and accomplished more with each year of their life.
When I explained to Olivia, that helping Zoe “ practice” walking, may not change anything she had this look on her face that said “ How do you act so normal Mom?, how can you say that so easily – that she won’t walk by herself, ever?”
We talked about Zoe’s decreased muscle strength; how she can’t balance- stand unassisted for more than a couple minutes. I didn’t say that Zoe’s body doesn’t make the energy her muscles need, her brain needs, her eyes need, her kidneys need- all the things affected by mitochondrial disease. I didn’t go there because Olivia knows now, that her body doesn’t make energy correctly either, and we are trying to teach her to remember to eat and drink and rest when needed-as her body tires. What I don’t think Olivia understands fully, even though she is so smart, even though she and her sister share the same kidney medicine- is that she has the same deficiency. She was just luckier.
I am sure that conversation will come someday. I have it with strangers sometimes – someone asked me recently if the disease was progressive. Yes. And both girls have it?Yes. This woman gave me the same look Olivia did. Kind of a shocked look as if she was thinking… well how can you just stand there? How did you get dressed this morning? Put on make up? How can you stand there smiling so calmly? What about Olivia- she looks okay right now...
What I wanted to say was- yes I get dressed each day, and the reason I am wearing this bright pink t-shirt today is because it makes me happy, even thought it’s not trendy or in style. And these are my favorite jeans, the most comfortable for loading the wheelchair, lifting Zoe, carrying the walker- running around throughout my day. And my makeup-well it’s not hiding much, not the tiredness or the lines, around my eyes now, , but that’s okay -. And I pray more now- for strength, for happiness, for peace and that’s what keeps me calm. As mothers we make a choice each day, and it affects the whole family. I choose to make the most of today , whatever it may hold.
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