I mentioned in an earlier post about Lucy's service that there were going to be some amazing people in our life giving tributes or eulogies at Lucy's service on Saturday. The tributes were amazing! In all there were six. Listening to everyone's words...it was like listening to their hearts. I will cherish those words forever!
While preparing to write this I thought about all of the possible topics I could talk about when it comes to Lucy and her extraordinary life.
There has never been a lack of things to discuss when it came to our girl… just ask Dr. R about the hundreds of emails we sent back and forth…or take a look at Lucy’s medical record!
I’ve already written hundreds of pages about her life on our blog.
There are so many things I could write about, yet, I struggled to find a topic… the words
Then it came to me; there is a subject that only I can talk about.
Because of this I thought it was most appropriate to share today.
What was it like being Lucy’s mom?
In a word…unbelievable!
In several words…exhausting, amazing, stressful, impactful, confusing, rewarding, challenging, powerful, defining, gratifying, life changing…
I am many things, but most of all I am a mom; it’s what I do best!
Being Lucy’s mom…well, that took being a mom to another level.
Lucy's life had a way of putting perspective into perspective.
I learned to let go of A LOT of the small things, and focus on what matters most! Letting go so much that I even did an entire IEP eval. in my pajamas, in my bed, with Lucy, and the therapist…of course.
My mother’s intuition, I learned that it was always right, ALWAYS, regardless of what I really wanted to feel.
What I wanted and what Lucy needed…they often were very different.
I occasionally got what I wanted.
Lucy...she always got what she needed.
Lucy and I, we were a great team. Together, and with the help of an extraordinary village, we could move mountains!
We never could have lived this life alone, we didn’t have to; for that we are so grateful!
I have had an almost six year internship in Lucy/mitochondrial medicine. I skipped med school all together and went straight for a specialty:). Without any formal training, but training nonetheless, I became Lucy’s primary care provider, providing twenty-four hour a day ICU level nursing care in our home. I have pubmed.gov bookmarked on my favorites list. I have read more journal articles in the past five years than I have novels. Often passing along what I read to the good doc, I think he appreciated it. I learned skills I never knew existed and perfected skills that could rival the best in the field…I can prep TPN in record time, and I should patent my dressing change technique, yeah it’s that good.
I quickly learned that in an effort to give our girl the “best longest life” (to quote the good doc), I had to be the best at everything I did for her. I was the expert when it came to Lucy!
You know the fine print that reads less than one percent will experience this, that, or the other…It should just read Lucy Marlett will experience this, that, and the other.
As many of you know our girl was extraordinary, a true one in a million, and NEVER did anything by "the book”, she defied the odds her entire life. She needed a mom who not only understood this about her daughter, but could also advocate this about her daughter. I became just that for her. Her biggest “cheerleader”, that’s what I would tell her.
The phrase “It’s Lucy!” holds so much meaning to everyone who knew our girl well.
Luc was exceptional not only medically, but also in the way she lived her life.
How do you fit a lifetimes worth of memories into 5 years, 10 months and 27 days? We split seconds, and made every half-second count.
Her diagnosis, Mitochondrial Disease, a progressive degenerative disease in which the body does not convert food and oxygen into energy correctly resulting in multi-system organ dysfunction. It is an incurable and terminal disease. Lucy never understood what that meant; she never knew what it was like to feel any different. If you asked her she was always “good” and "not tired! In spite all of her circumstances she LIVED LIFE!
The biggest motivators in her life…"the kids”!
“Play with me...Meggie, Sophie, Jack”
“Mama when ‘the kids’ coming?”
We made it a priority as her family; mine as her mom, to make living life possible for our girl, our family of six.
Nothing about Lucy’s life was easy, but not doing something because it was too hard…that was never an option in our life!
Carrying her, ALL of her bags, ALL of her tubes, and ALL of her pumps around our house so that she could participate in meal time, therapy, play outside in the yard, swing on her red swing, dip her feet in the pool, lay on the floor with the kids and play, or sit on the counter and assist us with cooking…we did that because it was living.
Lucy practically grew up on our kitchen island. Like Goldilocks we were constantly searching for the perfect seat for our girl, one in which as her physical body declined she was still able to participate in the everyday living that she so loved.
We would do just about anything for our girl that would improve her quality of life and give her comfort. Why, because we loved her!!!!!!
It didn’t matter to us what Lucy could or couldn’t do, we just accepted Lucy for who she was. I‘d like to think that as Lucy’s mom I did a good job of conveying this to the people in our lives who worked closely with our girl. But what I know in my heart is this, that God placed just the right people in our life. I may have played a role in their acceptance of her, but in all honesty they just accepted Lucy for who she was too.
I never told Lucy she couldn’t, I never let her disease define her capabilities, who was I to say she wouldn’t. Heaven is full of every opportunity her little heart desired, and I believe that she is living out every dream she ever had on this earth and then some now.
Lucy’s life is a beautiful testimony of having faith in God.
Lucy’s life is the story of our faith.
Lucy may have been born from our flesh and blood, but she was never just ours…
When Lucy was born, I took one look at her beautiful red hair and blue eyes and said, “This child was born for a purpose.” Little did I know the impact that her life would have on the lives of not just ours...but yours as well! That was all God! I just have the honor and privilege of being Lucy’s mom.