Day in the Life of Maddie

I promised myself and others when I started to blog that I would be honest and open, careful to not romanticize or over-dramatize our daily life.  So today for the sake of being real, I am going to write about… today.  I had chemo yesterday and the 3 days after are always full of fatigue.  We have a nanny that helps on chemo days with Maddie, so I can try to sleep off as much of it as possible, to get back to being Mommy as quickly as I can.

Today, because our schedule mandated, and I sometimes try to push too hard to maintain normalcy (probably more of the latter).  Maddie has occupational therapy at 10:30, physical therapy at 11:30, and her second haircut ever at 1:00.  Old me could have managed to come out okay and maybe even throw in a park visit to give her a bit of fun amidst the appointments.  “Chemo me” is a bit of a different stubborn creature who thinks she can do anything up to the point of passing out as the only acceptable stopping point.

Needless to say, we wake up after a long night of Maddie rustling (she has sleep apnea and is a very restless sleeper) and me tossing and turning from the insomnia this chemo has brought.  My wake-up call rings at 6:30am when the darn light of that bright summer sun seemingly pries open Maddie’s heavy eyes.  She loudly awakes with her daily greeting over the monitor we have in her room with “Good morning Mommy! I’m awake now!”

We get her up, cath her, brace her legs, and help her get dressed.  My morning ration of energy is about spent by the time this 30 minute routine is over.  Then we load up her and her chair and head to her therapy appointments.  Because of Maddie’ strong will, we are sentenced to wait in the waiting room, so she will not spend the whole hour begging for Mommy: so endearing but not conducive to good therapy.  This is the time I waste doing puzzle games on my phone to try to strengthen the few pitiful brain cells that have managed to stick with me through the chemo.  After Maddie rocks therapy, we trek back down the big building to the large parking lot that is devoid of enough handicap parking to meet its typical needs.

Exhausted at this point, we grab a quick lunch before heading for Maddie’s trim that she requested.  She gets so excited about the small things that it serves as a great reminder to me constantly.  We come home afterwards and crawl into bed for a quick nap to try and rest off some of the day and our bad night.

Take out is on the menu tonight because this momma has to choose between expending the last bit of will power I have on cooking or playing a riveting game of knocking towers over with Maddie before bed (or as she prefers to call it: BLOCK FIGHT!).  Her uncontrollable giggles reinforce the right choice has been made.

Now it’s time for a quick bath and a few couch cuddles before calling it a night.  I struggle so much with Mommy guilt that our life has been altered by the cancer and that I cannot be the most active mom like I used to be.  It seems like every time these thoughts creep in though, Maddie will throw her arms around me and tell me something that makes me feel so much better, her favorite phrase being “You’re my best friend Mommy!”  Sometimes I get upset about our lots.  Why my baby?

Why me on top of everything else? My husband put me in check so appropriately.  He asks “Even after the hard days, would you choose to swap lives with someone else?”  My answer is always a quick, unequivocal “No way.”  The joy my baby brings to me every moment of the day, even though the mundane and tiring times, makes the rest fade away.

It’s like the old saying that you forget all the pains and struggles of childbirth as soon as you hold your baby for the first time.  I write all of this to say, through your daily labors, you have to find those relationships that make them not only worth it, but even make you grateful for your present situation, whatever that lot may be.

Grateful that even though times are hard, they have given us so much strength and beauty, and given us the opportunity to experience some of the most pure and beautiful relationships if we let them.

Amanda

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