Ulang Tahun Setiap Hari untuk Bayi Berumur 99 Hari
Kisah perjuangan hidup bayi Eliot Mooney yang terkena trisomi 18 begitu mengharukan. Eliot hanya mampu bertahan 99 hari karena sejak dalam kandungan ibunya, Eliot sudah terdeteksi penyakit kelainan genetik.
Kedua orangtuanya Matt dan Ginny Mooney yang berasal dari Arkansas AS, bertekad akan membuat hari-hari si kecil Eliot penuh arti hingga ajal menjemputnya pada Oktober 2006. Di hari pemakamannya Matt dan Ginny melepas 99 balon warna-warni di atas kuburan Eliot sebagai bentuk penghormatannya.
Matt dan Ginny merekam hari demi hari kondisi Eliot tanpa rasa sedih tapi penuh kegembiraan. Mereka berjanji tidak akan sedih selama mendampingi Eliot dan menganggap Eliot anugerah paling indah dan tidak pernah menyesali kelahirannya. Mereka bahkan merayakan ulang-tahun Eliot setiap hari, menyadari bahwa setiap hari bersama Eliot adalah anugerah.
Mungkin banyak orang tua yang tidak tahu mengenai penyakit trisomi 18. Penyakit ini menyebabkan bayi yang baru lahir tidak bisa bertahan hidup lebih dari beberapa hari dan hanya menunggu vonis mati.
Penyakit trisomi 18 biasa disebut dengan Edwards syndrome, yaitu kondisi kelainan pada kromoson 18 yang menyebabkan kemampuan intelektual anak berkurang dan ketidaknormalan beberapa bagian tubuh.
Terakhir, saya akan membagikan kata-kata orang tua Eliot di hari pemakamannya yang selalu menjadi inspirasi buat saya. Saya menebalkan kata-kata yang menjadi favorit saya. Semoga kata-kata tersebut juga dapat menginspirasi Anda.
Ginny and I, and many of our friends and family, gathered Monday to celebrate Eliot’s life. It was perfect. Following a song entitled, “Everything’s Alright”, I struggled through the following:
“‘Everything’s Alright’…not your ordinary funeral song, and ‘Don’t wear black’ are not your ordinary funeral instructions. But Eliot was no ordinary boy. His life was extraordinary.
A dad speaking at his son’s funeral is probably a little strange as well. But Eliot’s is a story I must tell. Ginny and I have things to say, and I’m going to try to say them today. We also have a saying as of late which is “go ahead & cry. We do”
But, if at all possible, hold it in for the next couple of minutes, or I’ll probably lose it with you. I have a tag team partner on board so I can tap out at any moment. With that said, I apologize for reading. My communications teacher would be disappointed. But I am just gonna try to make it through.
I want to thank you all for being here today. Ginny & I wish we could personally sat down with each one of you and express how much your actions have made our burden lighter.
Thanks for making a call when it had to be awkward for you do so. Thanks for letters & birthday cards for Eliot. Thanks for feeding us, when food was the last thing on our mind. Thanks for surprise one month birthday parties & blog posts & law school softball tournaments for Eliot. Thank you- family- for your love and support. Thank you Josh, Becky, Heather & Paul for walking through this with us.
Thank you all for joining us today to celebrate the life of a special boy who impacted so many.
We view today as a celebration. We celebrate the greatest gift the Lord has ever given us. In Eliot, we enjoyed so much. We loved so much. We learned so much.
Although, Ginny and I had seats near the front of the class, you all joined in on the lessons & the classroom kept expanding to include people we had never even met. We all sat in awe as God, Himself, took a sick little boy and pulled back the veil to reveal lessons about Himself.
An underdeveloped lung. A heart with a hole in it. And DNA that placed faulty information into each and every cell of Eliot’s body – could not stop the living God from screaming of Himself through a child who never uttered a word. To an outsider it may seem nothing short of foolish to credit all this teaching to Eliot, but
I Corinthians says that…”the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God.”
It goes on to say that God’s wisdom is unlike ours and his tools are not what we would imagine. His tools are not the ones we would craft.
Not a pulpit. Not a slick presentation. Not a bestselling book. But a 6lb. boy with Trisomy 18. God found great pleasure to take a lowly thing in the eyes of the world and show Truth.
Every aspect of Eliot’s life was a paradox. Because I hate it when people use words that I do not understand- let me define.
A paradox is defined as
“a seemingly absurd or contradictory proposition that upon investigation proves to be true”
Truly, all of Christianity is a paradox. G.K. Chesterton writes that, “Christianity is a superhuman paradox whereby two opposite passions may blaze beside each other”.
Our God teaches us that:
To become greatest I must become least.
That as a believer, I have total freedom & yet strive not to sin.
And ultimately, that I find life – in none other than the death of man named Jesus.
Through Eliot we experienced the paradox of joy and pain ablaze side by side.
Truly, the Lord did not ask us to take a path which He had not already traveled on our behalf. Although we did not willingly give up Eliot , his life & death have given new meaning to the sacrifice the Father made when He gave His only Son unto death, that we could have life.
And so today, we celebrate. Eliot is well. And, although we miss him more than we can express, we are only separated from him by our time left on earth. We anxiously wait to join Him in worshiping the Lord.
So today we propose a new standard.
How do you measure a life? By years? By esteem? By productivity?
Eliot Hartman Mooney
99 days, 98 birthday parties (& today makes 99)
17, 557 visits to his website
0 minutes unattended
Although these statistics are fun. They all fall woefully short of a metric whereby to judge Eliot’s life. We propose that Eliot’s life be measured by impact.
Thus, truly his was a full life.
We encourage you today to not forget Eliot. To not forget whatever his sweet life taught you. Please go & do that which has been stirred in you through his life. And we look forward to hearing of the ripples he has made in eternity.
Finally, when you arrived you were handed a flower. We believe that Eliot’s life is best understood when pictured much like the flower you hold.
A flower is picked to be enjoyed. Sweet to smell & viewed by all.
When your flower was picked, a process began whereby the flower’s life will end. But this is not the way we view a flower. We just enjoy it. We take it in.
Thank you, Eliot. You were the joy of mine & your mom’s life.”
Sumber: http://health.detik.com/read/2009/08/31/132619/1193105/764/vonis-mati-bayi-trisomi-18, dengan beberapa tambahan oleh Charles Christian.