Saturday, November 15, 2014

2329 Days & Growing

[caption id="attachment_745" align="alignright" width="456" class=" "]Termination Recommendation "Your baby will not live a quality of life worth living. I recommend termination." *said by many doctors upon diagnosis of hydranencephaly in utero "The idea that some lives matter less is the root of all that is wrong with the world." ~Dr. Paul Farmer[/caption]

This photo is the ultrasound photo of Brayden Alexander, the inspiration behind this mission, taken approximately 1 month prior to his debut in to this world - 2329 days ago. Notice that the area where his brain "should" be is a black hole of nothingness (I put quotations around that word "should", since he was born exactly as he should have been - but typically speaking, a baby would have brain tissue on display there). That message at the top, that's the message we were delivered on the day this image was taken, as well as every week before this was taken and every week after until his birth.

[caption id="attachment_746" align="alignleft" width="199"]534736_281780825257748_530391503_n Who could resist this sweet little face?[/caption]

Doctors would not or maybe could not share with me the true diagnosis, only that he had a deadly brain anomaly that would not allow for him to survive. They drew pictures. They set up models of a brain compared to his brain. They encouraged me to speak to a psychologist who would help me to "deal" with the great level of denial I was "obviously" in with my persistent declines of offering termination. This photo is one of the several dozens we were gifted because there was minimal chance of him being born alive - in fact, next to 0% chance of him being born alive.

[caption id="attachment_747" align="alignright" width="300"]63320_282770795158751_821211265_n Meeting mommy for the first time - love at first sight![/caption]

What the doctors would share with me during my pregnancy - and share with me FREQUENTLY they did - is that we should terminate his life because, "he would not survive to term or very long after his birth." Despite the doom-and-gloom filled weeks prior to his debut, not full of the anxiously-awaiting-arrival pregnancy celebrations that most mothers experience & I had with my previous two children - this sweet little face made his earthly debut a little earlier than his planned c-section on June 30,2008.

201,267,218 seconds.
12,076,033,080 electric jiffies.
3,354,453 minutes.
55,907 hours.
2,329 days.
332 weeks.
166 fortnights.
85 lunar months.
75 months.
25 quarters.
6 years.
6.57 lunar years.
1.60 olympiads
1.28 lustrums.
0.64 decades.
0.43 indictions.
0.25 generations.
0.13 jubilees.
0.06 centuries.
0.00638 milleniums.
0.00000002774844180840 galactic years.
0.00000000020126721800 exaseconds...

...this little life began here on earth & without uttering one full sentence, has changed the world in more ways than most do in an entire long lifetime.

2329 days ago, we began our journey with hydranencephaly. On that first day we heard of the diagnosis of hydranencephaly - not presented in it's true definition (in short, the absence of the cerebral hemispheres to varying degrees) but instead as "your baby does not have a brain and will not live beyond a few days." *big shout-out to the doctors at University of Missouri-Columbia for delivering the news that would typically strip a parent of every ounce of hope for their child's life - without hope, there is nothing*

Flash forward 6 years, 4 months, and 16 days to this day: November 15, 2014 - 2329 days have passed & you will find us remembering this little man's amazing life and continuing to bathe in his big, bright light.

Brayden Alexander Harper indeed did grow his little angel wings, just as the doctors predicted - just not when they predicted. Instead of those "few days" we had been predicted to spend with our baby boy, we celebrate 1599 days of life - that's 138,153,600 seconds, 2,302,560 minutes, or 38,376 hours that we were blessed to have him in our life. If we had listened to the doctors and not allowed Brayden to guide the way - that number of days, seconds, minutes, & hours could have very easily not have been possible at all.

2324 days ago, on July 5, 2008, we brought him home from the hospital, despite being encouraged against doing so. You read that right - we were encouraged against doing so. Apparently parents can do that, just sign their child over to the hospital to live there. We could not & encourage other families not to either, despite recommendation to do so. If you feel as if you cannot find the strength to bring your child home with a terminal condition - please contact us so that we can help your child find a home to spend their days in. No child should ever, regardless of the amount of time they have here on earth, spend that time in a hospital - they need to be wrapped in the arms of a family that can love on them for however many few or however many several days they have here on earth.

[caption id="attachment_748" align="alignleft" width="237" class=" "]Brayden with daddy after shunt placement in August 2008. Brayden with daddy after shunt placement in August 2008.[/caption]

2297 days ago we won our fight for placement of a shunt to help with hydrocephalus pressure when doctors saw the procedure as "pointless". Again, doctors are not always accurate when reading their crystal ball - do not allow them to predict your child's future & instead advocate for them to live the best quality of life possible, regardless of the expectations that are tagged to the diagnosis.

Starting before 2329 days ago until today we have cried ALOT and have even been angry more often than that...

...but ultimately, we have found enlightenment to the possibilities that exist for all babies given this diagnosis.

Never was Brayden suffering in pain & anguish, nor was he having his life sustained with extreme medical interventions. He was a baby boy that was sharing his love of life with everyone around him - which he did for all of his days on earth. He smiled, he laughed, he danced, he cried, he lived and he ultimately LOVED.

[caption id="attachment_753" align="aligncenter" width="559"]His Journey's Just Begun featuring Brayden His Journey's Just Begun, in loving memory of Brayden Alexander Harper "Don't think of him as gone away his journey's just begun, life holds so many facets this earth is only one. Just think of him as resting from the sorrows and the tears in a place of warmth and comfort where there are no days and years. Think how he must be wishing that we could know today how nothing but our sadness can really pass away. And think of him as living in the hearts of those he touched... for nothing loved is ever lost and he was loved so much." ~Ellen Brenneman[/caption]

2329 days later and he continues to share that love through all who were privileged to meet him here on earth, or have since met him through stories & photos. And appropriately, since his little life stands as a reminder of all things to be thankful for, he took those last breaths here on earth during the month of giving thanks. I wrote this last year for Global Hydranencephaly Foundation's e-newsletter "The Bee's Buzz" and shared it again this year:

~I’m thankful for the lessons he taught me, which there are so very many, but a big one was this: to slow down, to not waste precious time worrying over work or money or cleanliness, but to find peace in cuddles on the couch and laundry undone and vacuuming that goes neglected.

~I’m thankful for the awareness he brought to my attention; the importance of focusing on the heroes during tragedies, giving them the praise and glory, and not giving second thought to the people who do not bring more to your life. I lost people in my life when my journey ventured on a path no one else wanted to travel with me, but the ones I found along the way are far more valuable to my life than those I have lost.

~I’m thankful for the unquestionable strength and determination he displayed, despite the obstacles he endured. If he could overcome and conquer, just as his bee-buddies do every day despite being told they “can’t” or “won’t” or “shouldn’t”, than it’s true when I say that everyone should “Believe in the Impossible!” There’s a reason that is our foundation’s mantra and why that word is never allowed in the vocabulary of anyone I talk to!

~I’m thankful for the memories we made. There was a time when memories were not presented as an option; when termination was presented as the “best choice” and imminent death was our expectation. That time was also time wasted as I cried folding clothes I thought he would never wear, or remembered experiences he would never have. Instead we got to live and love and experience life together: traveling, hiking to waterfalls, swimming in the ocean, toes in the sand, and his favorite sweet potatoes.

[caption id="attachment_749" align="alignright" width="300"]Definition of a Hero featuring Brayden "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." ~Christopher Reeve[/caption]


~I’m forever thankful that I was introduced to my hero by being granted time here on this earth as his mommy, the keeper of his memory, and the voice of his life. Not only did I get to be his mommy, but I have the honor and privilege of continuing to advocate for families on his behalf, ensuring that they have the opportunity to live the best quality of life possible… exactly as Brayden did. That’s not only a tremendous honor, but a huge expectation to live up to.


~I’m thankful that his big, bright light continues to shine through this very foundation and that I’m able to share his memory by sharing the lives of his friends. That I am able to connect with families on a personal level, expanding my own family to include our hydranencephaly families, and that we can share on this journey together; embracing one another in sadness and struggle, lifting one another up in darkness, and praising with celebration of the littlest obstacles overcome, which are often overlooked by those who are onlookers to the journey. It truly is a wonderful journey, though many struggle to recognize that.

ism-inspire yo to be a special kind of person

As we remember the inspiration behind Global Hydranencephaly Foundation and it's mission - will you continue to let the number of days, 2329, continue to climb as his light continues to shine bright on the world, bringing so many more reasons to "Believe in the Impossible." 

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