Sweet 16!

Today, Gigi celebrates her 16th birthday

As many of you know, I post this note every year on March 9th. Today I have to post for the first time on Medium thanks to Facebook’s brilliant decision to remove Notes from the platform. To see previous versions of this note see the links at the bottom of the page. Eventually, I’ll copy/paste them to this site for future archiving.

Today, Abigail (or Gigi as we all call her) sees SIXTEEN CANDLES. Those of you, who went along for the roller coaster ride that was Gigi’s birth, and 4-month exhausting NICU experience, know how monumental every birthday is for our little princess. If you’ve read this note before, I haven’t changed much, so skip down to near the end to read the latest and greatest. For those that haven’t heard this story, let me start by sharing her story.

Gigi was born at 3am on March 9th, 2005. I was actually out of town, and got the first call at about 2am Florida time telling me that Vickey was having a miscarriage. She was bleeding at only 23 weeks.

Abigail’s first photo taken the morning of March 9, 2005

When she arrived at the hospital, the doctors checked her out. They knew two things. Gigi was still alive, albeit barely, and time was of the essence. Vickey had a placental abruption (where the placenta separates from the uterine wall). She was hemorrhaging and Gigi was not getting any oxygen. After an emergency c-section, the doctors resuscitated our little girl got her heart beating again and breathing (with the help of a respirator). Abigail weighed in at 1lb. 7oz and was 11 inches long. My wedding ring could go all the way to her elbow.

The neonatologist warned that too long on the respirator would weaken her barely formed lungs to the point of no return. After trying numerous medications and techniques, the situation looked bleak. The doctor acknowledged they would continue to try another round of medications for a 3rd time, but in his nearly 20 years of experience, none had survived after the first two rounds with little to no progress. About 3 hours later, the doctor came to me, teary eyed, shocked that the 3rd time was the charm. We saw for the first time the fight in our Gigi.

To go through every detail of the next four months would require a novel. Basically every chapter in prematurity and what things could go wrong happened with Abigail. The first blow came a week after Abigail was born. Abigail got a helicopter ride to the larger NICU in Ft. Worth because of a perforated intestines. At the end of that night, the doctors were advising us to pull the machines.

Abigail shortly after her first intestinal surgery

We didn’t.

For several weeks, we were consistently told she likely wouldn’t survive. She had nearly a dozen surgeries her first two months in the NICU. She got better, then sick again. She went on ECMO (look it up…scary). She almost lost her eyesight.

Throughout, we were told she may never walk, talk, eat on her own, etc. In January of 2007, she was diagnosed with Cerebral Palsy, and we learned she had virtually no cerebellum. Through exhaustive therapies and complex, costly contraptions, Abigail is still unable to walk.

Abigail at about 9 months old

Today, she’s SIXTEEN and for anyone who has a teenage daughter…I’m sure you can relate. She talks with attitude. She plays with attitude. She knows how to run her iPad and play video games better than most adults. She continues to have a growing taste for music, including musicals. She can not only recite most songs from many musicals, but she can also tell you which actress sings each song. She is, in many ways, like any other 16 year old young woman, though I’m not sure where she got all the stubbornness from — must be Vickey.

She’s continues to maintain the princess title within the Wilson home. Even her brothers are often unable to resist her gentle, sweet way of asking for help (ok, not always that sweet). Her two favorite furry friends, Bosa and Tucker will often compete for the best spot on the bed at night.

It’s not all perfect, though. As any parent of a special needs child will tell you, this life is full of contradictions. Every day you appreciate how blessed you are to have such a beautiful miracle, that is truly unique in so many ways. Yet, at the same time you have the sharp realization that that same uniqueness carries lost dreams with it as well. The has been even more the reality through the past year. As with everyone, COVID-19 has impacted Abigail’s routine in ways that many can relate, but also in ways that are very unique.

I’ve discussed that Abigail has made friends. Through this year with the pandemic, Abigail’s already limited opportunities to connect with these friends, primarily through church, have been practically eliminated. Abigail’s ability to comprehend and understand our inability to visit church, friends, and relatives has been fleeting. She has prayed everyday since March 15th that the coronavirus go away.

Truthfully, Abigail’s social and cognitive bearings are regressed in many ways. Her ability to interact with girls the same age is already challenging. She wants to connect with them, but she often doesn’t know how. With quarantine and an inability to effectively use social media or other online engagement, her connections with friends have almost completely ceased. Many have experience the loneliness and sadness that has come with this, but Abigail has a very difficult time understanding the why or temporary nature of this time.

One story to of the past year really demonstrates Abigail’s growing faith. It may seem kind of silly, but there was a game on her iPad that seemingly disappeared around the same time of COVID arriving. The game was no longer available via the App Store, and by all appearances it was not going to return.

To Gigi, this was not a minor event through all the other chaos and routine smashing. She was heartbroken, and began praying every night that the game would return. Vickey and I were both heartbroken for her and even wrote the game developers, but received no response. We started preparing her for the reality that God may say “no” and the game may never come back. She did not relent, checked the App Store everyday, and prayed for the game to return every night before bed. On December 1st, the game returned and she was over the moon. For 259 nights (yes, we counted), she prayed that the game would return, and IT DID!

She continues to pray every night that COVID go away and that all the people she loves are protected and don’t get sick. Abigail perseveres in ways I only wish I could. When she’s determined towards something, nothing can pull her away or lead her to giving up.

Abigail with her oldest brother, Hunter

As I’ve discussed the past few years, there are disconnected realities of being a special needs parent. Don’t get me wrong. I know it could have been much worse. And we are so blessed, so very blessed, to have Abigail here, when we were told by many she wasn’t going to be. However, this doesn’t remove the bittersweet reality of being a special needs parent. And if you haven’t experienced it, you can’t truly understand it.

This brings me to the poem, Welcome to Holland by Emily Perl Kingsley. She equates having a special needs child with planning a trip to Italy, but instead being diverted to Holland.

“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
Emily Perl Kingsley -

Abigail — Christmas 2020

So with that, I count the blessings. The awesome things that makes Abigail…Gigi…the only Gigi in the world. Her personality is amazing, almost always talkative, playful, and friendly (I said almost always. She is a teenager, after all). But perhaps I come home, exhausted after a tough day at work, and all I want to do is sit and chill for a bit. Then a little voice calls out, “Play with me, Daddy.” I have to remind myself, there’s no greater sound in the world. How many dads still have that with their daughters at 16? That’s awesome, as are the hugs, good night prayers, and even recently when I told her that my back hurt… “That’s because you’re getting old, Daddy.” Nice. Thanks, Gigi.

I’m not a huge country music fan, but there’s a song by Martina McBride called In My Daughter’s Eyes. I really suggest a listen, because it’s a beautiful song, especially for anyone with a daughter. But for me the part that always chokes me up is when it says:

I often hesitate to call Gigi, our miracle baby. I say that not because she isn’t a miracle, because she is. Instead, she reminds me that all children (and for that matter all of us) are miracles. Gigi surviving and becoming her own person is a miracle, but truthfully, the fact that so many children are born normally everyday is the true miracle. So please wish Abigail/Gigi, a super happy FIFTEENTH birthday today, and blow her a big happy birthday kiss… Thanks for listening and Happy Birthday to Gigi!!!!

PREVIOUS FACEBOOK NOTES

at least the ones I can find ;)

Gigi Birthday #15
Gigi Birthday #14
Gigi Birthday #13
Gigi Birthday #12
Gigi Birthday #10
Gigi Birthday #9
Gigi Birthday #8
Gigi Birthday #7
Gigi Birthday #5
Gigi Birthday #4

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