A Tribute to Mikayla's Unconditional Love

We are grieving the death of my first-born granddaughter, Mikayla. My daughter, Katie gave birth to a sweet precious girl, 23 yrs ago, only to learn that she was severely disabled. This is her story. From Katie:

9 months of pregnancy (but we all know it’s really 10)

18 hours of labor (she was posterior) with no medication

5 months of newborn bliss

2 hours of shocking realization

Neurologist

Ophthalmologist

Uncontrollable seizures

Brain MRI

Life-altering news:

She’s blind

Her brain didn’t develop properly

She will be infant-like for the rest of her life

Life goals and plans came to a SCREACHING halt and then went flying out the window

Depression

Sobbing

Denial

Anger

But she is now our life

Her care becomes priority

Doctors

Appointments

Therapies

Friends you thought would be there through it all are gone - they can’t handle the realities

People you never knew become lifelong friends because they are able to share and walk through the mess

Undiagnosed…there’s no name for what’s wrong

Can’t qualify for extra help because there’s no name for it

First Wheelchair

Barely making ends meet

Move across the country

New everything

Her care is completely overwhelming

Consider permanent residential care because I just couldn't do it all anymore

BUT GOD

Showed up through an acquaintance of a friend of an acquaintance to educate us on the help we could get (and i could never find that person again and I still believe it was an angel)

No longer doing it alone

A Baby Brother

She’s happy

Agencies

Therapies

Nurses

Medications

Supplies

A Baby Sister

She was jealous…but then happy.

Then a diagnosis - TUB B2B (‍ Yep, that’s a real thing)

One of only 8-ish known people in the world who have it

Life expectancy unknown but probably only 14 years

Keep pushing

Keep advocating

Keep fighting for every. damn. thing.

Listen to me!!! I’m her mom!! I know her!!

And they did

And we had everything she needed…

And she was beautiful and funny and sassy and stubborn and the very best listener and the strongest person I’ve ever known. What Mikayla lived through for 23 & 1/2 years is astonishing. She rarely cried. She smiled and laughed. She wanted all the attention. Don’t talk about her without talking to her. And she was the most incredible example of unconditional love and supernatural peace that you could ever know on this Earth. If you knew her, you loved her. And if you didn’t understand love, knowing her would teach you. Mikayla taught me love. Mikayla taught me grace. Mikayla taught me to be strong when it wasn’t easy. Mikayla taught me that sometimes the hard decision is the right decision. Her presence in my house is missed deeply…to the very core of my being…but she is a part of me. She looked like me. She made faces that I make even though she never saw me. And when she was close to leaving this Earth, I told her thank you. And I told her I was so excited for her to be free. And I told her to have so much fun with Jesus but to pray for me/us because we were going to have a hard time without her. And I watched her take her last breath. She was so very tired....Jesus called her home.

So many people have offered to help with flowers & food, but the main need Katie has at this time is financial. Katie has struggled over the years with not having income when she has to take off days/weeks at a time for Mikayla's care (hospital, serious illness}. Please consider donating toward helping Katie and her family as well as the wonderful caregivers who unexpectedly lost their jobs when Mikayla passed. Thank you...