My eulogy:
Here we are. If you haven’t known us from the triplets’ birth
you might not know that before we met this beautiful little girl we were saying
goodbye. There was a period of time when I was pregnant that I didn’t know what
to pray for. Doctors had numbered her days and I just didn’t have the words. I
settled for please. Just please. God, please. We had so many ultrasounds in the
last three months of pregnancy, daily at the end, that we truly got to know
their personalities. I was carrying Mya on the bottom and Ella was right above
her and often Ella wouldn’t leave her side. I felt like she was holding her.
And then one day as Mya kept fighting I realized that just maybe we would get a
chance to hold her too. If only for a moment. But she held on and we got so
much more than that. We held her for very nearly 7 years. I am thankful for
every day. I am sorry if you never had the opportunity to hold Mya because it
was an experience in itself. She was THE best cuddler. You could just feel her
spirit. You could tell she knew where she was and who she was with and just hear
her voice. She didn’t need words for that. My favorite thing to do in the
evenings after her brother and sister were off to bed was to sit in my chair
with her settled into my shoulder. She got to where she would immediately fall
asleep in my arms but always first I could feel her exhale. It was like she
couldn’t fully relax until she was being held.
Mya did not have an easy life and I don’t think it does her
justice to pretend she did. She fought for breath and health and calories. She fought
daily seizures for over 6 years. She endured countless needle sticks and
therapies, surgeries and admissions. She stayed in when others went out all the
time. She couldn’t verbalize her pain. She sometimes slept for days and went
for months and years between smiles. There were periods where she was fully
present and then periods where she just wasn’t and we could never be certain if
it was the seizures or the medications or just her brain but all we knew was
that we missed her. And you never would have known any of this by looking at
her. She just did not complain. She took it all in and kept on living.
Many things that aren’t typical in family life found a way to
weave their way into ours and just became normal. I have a memory of standing
in the kitchen in our old house and looking up to see 18 month old Clayton
proudly lifting Mya’s feeding pump up and running toward me. Like look what I
found, mommy. I got out the STOP when he had about 2 inches of slack left in
the tubing. Buddy that is attached to your sister. Crisis barely averted but
they learned a lesson that day and never bothered her pump again. We spent
their 4th birthday in the hospital. Mya was super sick that time
with pneumonia and a breathing tube. We had a party planned at the fire house
and I remember just stepping out that day to attend with my other 2 birthday
kids. Like putting a pause on all that was going on in the hospital. One of the
ICU nurses had hung a giant birthday banner across her door and child life had
come around with some gifts so she had her own celebration but splitting up for
events was starting to become something normal in our lives. Ella and Clayton
learned their numbers from about 75-120 from reading her pulse ox monitor. Clayton
would run in to tell me that Mya’s red number was at 98 and her green number
was at 89 and that was good. We got really good at snaking our way through the
stores pulling the shopping cart and pushing the wheelchair and not losing any
children all while ignoring any comments or stares by the general public. Mya
usually had her own Christmas present party at strange hours of the day because
she is the only kid in the city that was allowed to stay up and see Santa Claus
and she took full advantage. In the months right after Mya started having her
seizures she screamed pretty much constantly if she was awake, like there was
so much chaos in her brain that she just did not know how to cope. The only
thing that calmed her was a bouncy chair and so we would switch off bouncing
and taking care of everything else. We would bounce her in the kitchen cooking
dinner or as we sat on the floor playing with the other 2. One desperate night
the bouncer even came to bed with us. There was a night we were bouncing her in
the dining room. Bernie and I were trying to quickly eat some dinner at the
same table at the same time like regular people do and had tossed Ella and
Clayton over the gate into the play room. (Well, it’s possible we actually just
set them down gently, but who can remember.) Either way they clung to the gate
and just started wailing. Mya thought it was hilarious when Ella and Clayton
were upset. The louder they cried the more she smiled. And so they kept wailing
and we kept eating dinner and they kept wailing and then Mya just started
cracking up. I think it was the first time we ever heard her laugh. There is
just something about a laugh that you were never sure you would hear. There
were so many things about Mya that were precious and fleeting. It made you take
notice.
As a parent when your child first gets a diagnosis like Mya’s
the future just drops away. You fight hard against the never-wills and the if-onlys,
but they are there and man they fight back. And then after a while the future
re-writes itself. Mya set out on her own path. The list of milestones she would
never reach didn’t stop her from living a full life. We know she felt love. We know
she had favorite colors (pink and pink) and favorite people (I won’t name you
but I think you know who you are). She loved music. She laughed and smiled. She
had opinions and she voiced them. She went to parks and museums and floated on
lazy rivers. She attended vacation bible school and went on road trips. She had
a best friend. She went to preschool and Kindergarten and then First Grade. She
was a Girl Scout. She loved to swim and swing and eat suckers if we let her. She
was baptized. She went ice skating. She went to camp where she rode a horse and
shot a target off the wall with an arrow. She participated actively in the
classroom. I heard many times that the position of Mya’s special helper was the
most coveted one in Mrs. Jones’ list of classroom jobs. She controlled some pretty great dance parties
at home with her switch. She was an excellent reading partner (right Ella?) She
was so in love with Ella and Clayton. And most everyone she met fell in love
with her. Mya touched so many people without ever speaking a word. I am so
proud to be her mom and I will carry what she taught me for the rest of my
days.
Thank you Mymy for fighting so hard to get here and so very
hard to stay. You were amazing. You have changed my life.
