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The Many Faces of Evelyn Louise

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My Story

On April 1, 2008, my parents learned that I was a little girl (YEAH! my mom was so excited to be having another girl). Unfortunately, that same day, they also learned that there was a cyst on my brain. My mom, kind of in shock, asked her doctor if she was playing an April Fool's Day joke on them. Her doctor assured her that they were not. Because of this finding, they went to see a maternal/fetal specialist. To their relief, the physician told them that the cyst appeared to be gone, and then they received more surprising news- I had a hand/arm deformity. Obviously, as any parent of a handicapped child can tell you, this is very heartbreaking news to learn. Little did my parents know at the time that I still had another, more heartbreaking secret to reveal.
After a long discussion with the physician and a genetic counselor, my parents declined an amniocentesis and any further prenatal testing. There was a mention of Trisomy 18 at that meeting, but it never occurred to my parents to do any research about the condition, so my secret remained. To this day, my parents are grateful that they were none the wiser.
After that visit, all was seemingly well until my mom was 31 weeks pregnant. That week, she started to have regular contractions. Then at her eighth month ultrasound with the maternal/fetal specialist, he discovered that there was a decreased amount of blood flow reaching me. She was sent to Labor and Delivery and we spent four days resting there. She had two blood flow studies repeated, both improved, but we were sent home on bed rest for the remainder of the pregnancy.
On July 3, 2008, my mom went to the specialist again for a repeat ultrasound and blood flow study. Once the technician began the ultrasound, they both could see that something was terribly wrong. I was not moving-only my heart was beating. Soon after, my mom was rushed again to Labor and Delivery via an ambulance this time.
About four hours later, I was born, weighing 3 pounds, 11 ounces, and measuring 17 inches in length. It took my parents a day to name me, but they finally decided on Evelyn Louise, meaning optimistic, brave and hardworking. They figured it was only appropriate. Because I was having a lot of difficulty breathing, I was sent to the NICU for further evaluation. Little did my parents know at the time that my so-called isolated limb deformity would be the least of their concern.
Six days later, they discovered my secret- I had Trisomy 18 (the neonatologists had decided to send off a blood sample for chromosome testing). According to the medical community, I was incompatible with life, yet I had been born and I was alive.
After about two weeks, my condition slowly started to deteriorate and I finally took a turn for the worse three days before I died. I died on Friday, August 1, 2008, exactly 29 days since my birth.
They are grateful that they got to know me, love me, and hold me for 29 days and although they were the BEST days of their lives, they will also tell you that they were very difficult days, full of tears, difficult decisions and, at times, anger and resentment. By this time, my deformed left hand/arm which, at one time, had been a devastating concern of theirs, diminished. My mom joked everyday about how cute it was. She loved the little brace that the physical therapist had made for my right hand (this hand was also deformed- it was clenched). They had started to make a brace for my left hand but it was not completed before I died. Obviously, my brace is one of her most prized possessions.
I am so glad that I met so many of my family members and close friends and I am happy that many of you got to hold me- I loved to be talked to and held. My parents have received so much wonderful advice and support and cannot thank everyone enough for all of their kind words and prayers.

Inspiring Words...

One of my moms’ aunts recently gave her a copy of this article, titled “G-d’s Handicapped Children,” written by Rabbi Aron Moss (http://IsraelNationalNews.com). It is in response to the following question: What is the purpose of such a short and sad life? My parents have found a lot of peace in these words…

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.
Some souls are so pure, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.
So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them disabled or handicapped; from the perspective of the soul, they are protected. They will never sin. Their sojourn in this world is often brief and, in terms of this world, may seem sad. But they have retained their purity. And they have fulfilled their mission.
These special souls remind us that true love doesn't need a reason. We often love others for what they give us - we love our children because they are cute, smart and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.
When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.
These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

What's Happening in My World

These are upcoming events and/or important information that me, my parents, and my sister would love to share with our family and friends:

I am going to be a big SISTER! My mom is expecting a healthy baby boy on March 29, 2010.

MY 2ND BIRTHDAY CELEBRATION (FROM HEAVEN)!
Butterfly Release Ceremony
Where: BAUE Funeral and Memorial Gardens
My Gravesite
When: July 3, 2010
Time: 8:23 pm