I cannot say, and I will not say
That she is dead-she is just away!
With a cheery smile, and the wave of a hand,
She has wandered into an unknown land,
And left us dreaming how very fair
It needs must be, since she lingers there;
So think of her faring on, as dear
In the love of there as the love of here;
Think of her the same, I say:
She is not dead-she is just away!
~ James Whitcomb Riley ~
In a baby castle just beyond my eye,
My baby plays with angel toys that money cannot buy.
Who am I to wish her back into this world of strife?
No, play on my baby, you have eternal life.
At night when all is silent and sleep forsakes my eyes,
I'll hear her tiny footsteps come running to my side.
Her little hands caress me so tenderly and sweet,
I'll breathe a prayer and close my eyes,
and embrace her in my sleep.
Now I have a treasure that I rate above all other.
I have known true glory; I am STILL her mother.
~ Author Unknown ~
This is the story of our beloved daughter, Hope Christine. Her time here on earth lasted a painfully short time, but her time in our hearts will last an eternity. May her story touch your lives and hearts in the same manner as she has forever changed ours.
My husband Brett and I had our first child, a son named Austin Lee, on April 15th, 1993. We had been married almost five years and we were ready and very excited to welcome a baby into our loving home. My pregnancy with him was wonderful and completely by-the-book. My Ob/Gyn is a very kind man who has brought many babies into this world, yet seems to still see each one for the miracle they truly are. He doesn’t normally do routine ultrasounds and I agreed with him that as we had no history of any known birth defects in our families, I would forgo the Alpha-Fetal Protein test. I am one of those women who loves everything about being pregnant, and I felt the same way about motherhood as soon as our son was placed on my chest after delivery. We had decided to space our children about three years apart, so shortly after Austin’s second birthday, we began trying for our second child. Before long, we were successful and we were expecting to meet Austin’s sibling around July 11, 1996.
Everything in this pregnancy was almost identical to our first. I had the “all day sickness”, and even though I’d been through it before, the first time this baby gave mommy a kick to say “Hi!” it still made me cry! I did become concerned toward the beginning of my third trimester that I wasn’t getting the real vigorous kicks I’d gotten from Austin. I distinctly remember someone saying to me “Well, this one is a girl and she’s just being lady-like!” I dismissed my concerns as this just being a different baby. However, about 6 weeks before our baby was due, things began to happen that I could no longer just wave off. People started saying that I wasn’t large enough for my gestation. I carried small with Austin, and I was used to the “Oh, you’re so lucky” comments, but these were “What is your Dr. saying?” comments. About the same time, I really obsessed all the time about the baby’s movement. One Saturday late in May, the baby was very still. I tried everything I could think of to get a wiggle, but without success. My Ob. said it was probably nothing but had us come to the hospital for a non-stress test. The results were inconclusive, although as soon as we got there and were hooked up, the baby started kicking up a storm. I was so relieved I can’t even put it into words. He suggested we come back the next morning to try again, but we had the same results. He scheduled an ultrasound the following Friday just as a precaution. All week I could not shake this nagging voice in my head that kept playing “Something is wrong…” a million times a day. The day of our ultrasound was May 31st, 1996. It was a gorgeous warm day and everything about it is etched in my mind forever. I remember what I wore, down to the earrings, what our technician looked like, and so much more. Since this was our first scan, we didn’t know what was “normal”. As I was so close to my due date, the baby’s image only fit on the screen a portion at a time. Everything was fine until near the end when she tried to get a clear picture of the baby’s head. She grew very quiet and looked for what seemed like an eternity. She got her supervisor, who tried for about five minutes before announcing that we were done and we could go over to our Ob.’s office for the results. We were very nervous, but I guess we still had that “everything will turn out fine” attitude. Does anyone ever really expect disaster to strike them? I remember which of the exam rooms we were placed in. My doctor came in and sat down with us and broke our hearts and slashed our dreams and crumbled our world as gently as he could. He explained to us that our baby had a birth defect called anencephaly. It is without exception fatal. It is included in a group of defects called neural-tube defects, along with spina- bifida and hydrocephalus among others. These defects occur when any part of this tube, consisting of the brain and spinal column, fail to close properly. It happens very shortly after conception. If our baby survived the birth, we would have but a precious few hours at most to try and convey what parents spend a lifetime instilling in their child. As my husband and I fell apart and our doctor continued the medical facts, I honestly kept waiting for someone to wake me up from what had to be the worst nightmare a person could have, or for the doctor to say, “But, we can fix this.” Today, six years later, I am still waiting. We were told that at this point in the baby’s gestation couples almost always have their labor induced. It is supposedly less mentally agonizing than waiting around for the inevitable. We stayed in the office a while to compose ourselves enough to go home and face telling Austin and our parents that this baby would not be ours to keep. That was without question one of the hardest times of my experience. For Austin, he was going to lose a sibling he was so anxiously awaiting, and for this baby’s grandparents, not only were they going to lose a grandchild, but for the first time in their parenting careers, their children were dying inside and there was nothing they could do to change things. The days of that weekend are ones that I will never forget. We spent those two days enveloped in the love and support of our families. So many things went through my mind all at once. The most prevalent was the fact that I was about to go through the one thing in life I had always thought I could never, ever survive. We can expect to lose a fair number of people during the span of our lives…grandparents, parents, siblings, perhaps even a spouse; but not a child and certainly never a baby. I honestly just expected to cease to exist during what lay ahead. It was also at this time that I told my husband that if this baby was a girl, I needed to name her Hope. I just kept hearing the replay of our doctor’s voice telling us there is no hope for these babies to survive, and I desperately needed to give her some, if in name only.
On Monday, the Ob. wanted to do an x-ray to confirm the baby’s condition. I honestly prayed my heart and soul out through the whole thing and up until the doctor returned that there had been some mix-up and our baby was fine. I still could not believe this was happening to us and to our baby. There was to be no reprieve, and our labor was induced. No words can really describe the emotional torture of that day. This was the same hospital where we had experienced the jubilation of our son’s birth, and everything looked and smelled the same. Even the print on the baby blankets that had cradled him and stood ready for this baby was the same. It literally broke my heart to remember another day in this same setting that had been the happiest of my life, when this was sure to be the darkest. The hospital staff was very accommodating. We were placed in a room at the end of a ward away from the parents who would experience only joy that day. There was a card on our door that alerted anyone entering from asking inappropriate questions. During the day I was cared for by a dear friend from school who is an L and D nurse. When her shift was over, she asked a friend of hers to take over. This is an example of how God gives us a positive to take away from the darkest negative. That nurse, Nanette, has become one of my dearest friends and someone I will treasure for the rest of my life. She is truly one of the reasons I am here today. During my labor, Brett and I chose the middle name for our child. It would be Christine, which means “near to God” and we knew this was exactly where she would be. At 9:45 p.m. on June 3rd, 1996, Hope Christine was born. She weighed three and a half pounds and was sixteen inches long. The physical pain was no match for what I felt inside. The one moment we should have been awaiting so anxiously was one we now dreaded, knowing what it meant would now come. My husband held me on one side and my sister-in-law held the other, and all I could do was sob “My baby…” over and over. Through the grace of God, she was born alive and we had her almost four hours, which is nothing and everything all at once. We had several pictures taken and spent her time piled in my bed. She was so very, very perfect with her cap on. It was almost possible to believe they were wrong about her diagnosis. To see the beauty in this tiny form that was so close and yet so far from perfect and to comprehend she couldn’t survive was almost impossible. In the end, she just stopped breathing in my arms. Letting them take her was the hardest thing I’ve done. There is no tomorrow, no second chance in this case. She was buried exactly five weeks to the day from her due date. She is in a very peaceful country cemetery about 15 minutes from our home. Going to see her is so comforting, but leaving her goes against every maternal instinct I have. Some of the hardest days for me were about six weeks after her passing. The cards and flowers had stopped arriving, and when I ran into someone I knew, the first words out of their mouths were no longer about my baby. The world was clearly moving forward, but I could not. Words cannot express how lucky I felt to have Austin. He was a physical reminder that all could go well, and a reason to keep going.
I cannot speak for any other mother who has endured a loss. I can only tell you what it has meant to me. My daughter’s defect is present almost from conception. It was so very much apart of who she was and what her destiny was to be. I believe she was in my script book from day one, and there was no editing possible. It was either have her as she was or never know her at all. I feel to be completely devastated by this defect is to be devastated by her presence in our lives, and that is the last thing I want my daughter to feel. I can honestly say I would do it over again a thousand times just to hold her those four hours again. Most days, I feel God has a certain number of all types of babies waiting to be born. Fortunately, the vast majority are healthy and ours to love and nurture all our lives. He wants the “special” ones to go the families who will love and treasure them and keep their memories alive always, and touch as many other lives as possible. This is not to say that I did not and do not have my “mad-at-the-world-and-God-and-poor-me” days, because I did and I do. In my heart I feel that I have been blessed with the rarest of gifts…one that will take the rest of my life to completely understand and appreciate.
Life does go on, though it is never the same. I honestly don’t think I’ll ever view anything in the same light as before, but that can’t be all bad. Once the “impossible” happens to you, you never have quite the same light-heartedness again. In addition to her big brother, Hope now has a beautiful, healthy baby sister named Leila Faith. I am so blessed by all of my children, and the very different stories they have to tell. Austin is my feet always planted firmly on the ground, Leila is my heart remembering to look for rainbows and Hope is my head forever in the clouds...and couldn't we ALL use a little of that once in a while?
To my dear husband, my children here, my family and friends, and the on-line moms I’ve met, your concern and support means more than you’ll ever know! To those of you who know of which I speak, may all our angels be watching over us and playing together above. To those of you who will thankfully never have to know this pain, treasure the miracles that God has given you to keep. To Hope, this is for you, with all of mommy’s and daddy’s love.
Click on the link below to visit the memorial graphics site
I created in memory of Hope
* October is Infant Loss Awareness month *
Brett and I would like to thank our "earth angel" Sherri. Her tribute to her daughter Madison was the first of it's kind I ever viewed, and I was simply blown away. Without her more-than-generous gifts of time, knowledge, and love, I don't know how this could have all come together. The amount of help she has given, both physical and emotional, is immeasurable. Thank you, Sherri, from the bottom of our hearts!
I also feel the need to add a footnote about the background displayed here. I poured through endless graphics sites looking for the perfect background for Hope's page. I found it is a set using the same angel that I made these graphics from. It is the way I picture Hope now, and the rabbit at her feet is the perfect touch. We had a pet bunny for ten years, and we had to have him put to sleep due to severe arthiritis just a month after Hope's passing. I have always pictured them together above. About a month after this page was up, I opened a June (Hope's anniversary month) issue of Good Housekeeping to find an ad for a plate from the Bradford Exchange with the entire picture this graphic came from. I felt so touched, like she led me to find it. THEN I see the title of the original painting...."A Little Hope Lights The Way." The angel's name in the picture is HOPE! I feel she is letting us know she approves of what we have made in her memory, and wanted a hand in it, too! Some would say coincidence, but I say different......
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