Special Needs Mom

The Soul of A Special Needs Mom

It's late, so the house is quiet and the lights are low. My box of kleenex is now empty. I hit the remote to turn off the tv and head first to O's room . And instead of quieting my craving to climb in bed and gather my first born's body in my arms, I instead bend down brushing my lips over the tip of her nose , and then close to her ear whispering.. promises. I love you's. More promises. I move next to Zoe's room, her cheeks are flushed yet she sleeps peacefully. First I gently kiss her forehead, and then each cheek. Finally her lips.There are no words for her. Just questions, questions I keep silently repeating. Am I doing my best? Making the right choices? Making memories? Teaching my daughters enough? Loving and Laughing enough? And the loudest question that is buried the deepest in my mothers soul -now is pounding in my head.." Will I have any regrets?"

I had just finished watching the movie Extraordinary Measures. Through mostly tear filled eyes. A lot of the drama for me was the imagery , the kids in power wheelchairs, the machinery, the illness, the fear, the desperation that was ever present. The emotional and open soul of a special needs mom.

The remarkable true story details a father's fight, and race against time, to not just find a cure, but to make the medicine that will save his children's life. Not a new story- and I had already read both books, mostly because I stumbled on them in my local library and I happen to read a lot. First I read " The Cure" written by Pulitzer Prize winning journalist Geeta Anand , the non fiction life account on which the screenplay is based- and then I read John Crowley's personal perspective " Chasing Miracles" .

Sleepy, yet unable to surrender, I lay in bed  last night, thankful for the comforting warmth of my husband beside me, thinking... " Am I fighting hard enough? "

I fought hard for the answers and the eventual diagnosis. I pushed and pushed-first fighting for Zoe and then for O. But with a metabolic disease, there is a certain amount you have to accept. With their illness, it is the mitochondria that is damaged all throughout their body. It is on a cellular level that cannot be re-engineered, at least.. not yet.

 It is morning now, the next day- and still I am moved and distracted by the difficult answers to all of these questions. I know am trying my best to make the most of everyday with my daughters. I am their best advocate. I support the cause and believe in the future of medicine and scientific advancement- but what is most important to me now is living like a typical family, I know this is best for the health of my kids today - even though fighting the hardest fight might be best for their future of tomorrows.

Truth and Beauty

When Zoe was little, each moment of truth was stunning. She will never walk by herself. She won't run in the grass, walk in the sand, or recklessly dance her way across the room. These moments have continued as she grows older. Drive a car. Have a child. Grow old.

 I grieve these truths and then move on, trying to live so typically that sometimes I can forget for a long, long while. Until now, now that Zoe, and her big sister, are coming to know these truths- and understanding them enough to shed their own tears.

 Zoe is 8 now, and loves to sing and dance- read about Ramona, and is smart, especially in that " when you least expect it" kind of way. Zoe's big sister is almost ten, and I have spent these years teaching them that they can do anything,that everyone is beautiful in their own way, that they are just like everyone else. For Zoe especially, she believes this to be true- and only recently has she started to see how truly different she really is.

During a recent bedroom dance session, I caught some of her awesome moves on video. She grabbed my iphone the other day and began playing the clip. She was stunned. " Mom, I looked horrible ( one of her favorite dramatic declarations.. horrrrrrrible!) I thought I danced better than that she said- and then she sat .. silent for a few minutes. And then just yesterday, we were talking about her book report presentation, nearly a month away.. and in the midst of all of her objections, was that truth that came before the tears... " I can't speak like the other kids."

And yes, I know how to fix these things. We will practice, and practice and adapt. The awesome team at school will help her practice too, and her confidence will grow. I know it will be another accomplishment for her.. until the next truth comes. And is that what comes along as your special needs child grows older- teaching them these truths?

I get emails sometimes from other moms in the special needs communities. Asking about what I deal with or how. Have I ever experienced this or that.?. and the answer is most always yes. I just can't share that. The grittiest ugliest stuff, the seizures, the stroke, the sicknesses- to me the details are private, and to my husband and others who love them - It is painful too. And sometimes, there are no words. I try to protect my daughters when they are at their worst, I want to care for them, heal them the best I can and we just hunker down until the storm has passed.

The start of this school year has brought many of these reminders, the adaptions, the schedules, the fear of the fast spreading school germs that can knock the girls down in a moments notice. I have been scheduling the MRI's, The EEG's, evaluations, updates and labs. Soon it will settle down, and I will slip into the school routine again. And I look forward to moving on , keeping the painful moments private and living so typically that I can forget for a while , until the tears come again.

Making the most of it..

“ 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.