Daniel and Emily’s Story

There is one dream I had for as long as I could remember. That dream was to be a “mommy”. In 1986, I met Richard, the man who would become my best friend, husband and the father of our children. I knew right away he was the one and after a mostly long-distance courtship he proposed on bended knee at the base of a beautiful waterfall and we married in 1993. The next few years brought job changes which moved us from Washington to Kansas to Oklahoma. After settling in Tulsa, we began to focus seriously on having a family.

In March 2001, we learned that we were pregnant with twins; I experienced such sheer joy and peace at this news. We had such fun telling the “twin” news to our family and friends. Along with my dream of being a mommy I had always thought it would be so wonderful to have twins. I imagined a constant playmate for each child; someone to share all the discoveries in life, someone to experience all the ups and downs, someone to grow old with in the years to come. Since I was carrying twins and of advanced maternal age (translation: age 39), I had more doctor appointments and ultrasounds than a younger woman with a single baby. This was fine with me; I looked forward to each monthly ultrasound. It was very reassuring to see them to make sure they were fine even though I could feel them move each day and my ob⁄gyn always heard strong heartbeats.

Around the fourth month, the maternal-fetal medicine specialist announced that he thought one baby was a boy and the other a girl. Again what wonderful news; how could it be more perfect! With each successive ultrasound the sexes were reconfirmed as being a boy and girl. I guess I would have been really surprised if come delivery day we would have had any other combination. Our little boy was always slightly bigger despite the “talking to” I gave him repeatedly about sharing nutrients with his sister.

It was sometime mid-way in the pregnancy that the maternal-fetal medicine specialist discovered what he thought looked to be a sign of Dandy Walker Syndrome in the brain of our daughter. He pointed this out on several visits and gave us a basic explanation of what it might mean for her. Even with this new development, I was totally at peace. I knew that if God was blessing us with two gifts, a boy and a girl, then we would accept them and love them no matter what physical or developmental challenges they faced. After all, none of us are perfect! Late in the pregnancy we had to switch to a new maternal-fetal medicine specialist and he too saw the signs of the Dandy Walker Syndrome or brain malformation on the ultrasounds. He cautioned us that the severity of the mental retardation would not be known until after the baby was born.

As the days and weeks went by I continued to grow larger and larger. Richard took a picture of me the day before delivery and looking at it afterwards I remember thinking – “wow, I was huge!” I did not have a single back pain or difficulty the whole pregnancy and for this I truly feel blessed. Around week 31, I started experiencing what I was informed were contractions and so I was placed on medication and semi-bed rest. Basically, I spent the next six weeks on the sofa watching television, mostly the cable news channels.

I did spend part of Labor Day 2001 in the hospital due to the contractions; I always thought it would be ironic to have a baby on that day. I also spent the night of September 11, 2001 in the hospital. The nurses thought perhaps the stress of the terrorist attacks that day could have played a role in my ending up in the hospital. I do not believe that to be true because I remember being at peace while watching the news that day. It was like I was watching a movie of the planes crashing and the towers collapsing. I think calmness during this horrible period in U.S. history was a blessing from God.

The days and weeks continued to pass uneventfully and I was put on the schedule for a cesarean section for Tuesday, October 16, 2001 at 7:30 a.m. I would need to go off my medication on Sunday and then hopefully make it to the scheduled c-section time. On Monday evening, around 7:30 p.m., I spoke with a wonderful friend who is the mother of two children. She suggested that we time the contractions that I was having and check-in with my ob⁄gyn to see what the plan was for the overnight hours leading up to the c-section. So Richard and I timed one and then two and even three contractions; they were about three minutes apart. So I called the on-call ob⁄gyn and she said we should go to the hospital. Shortly, after 9 p.m. we arrived and they decided around midnight that we would wait and have the c-section as scheduled. So Richard went home at midnight to get some rest. To make a long delivery story short; after watching me fidget with contractions for a couple of hours they decided to examine me and told me I was three centimeters dilated. Honestly, I thought the bed was not comfortable and thus causing me slight back pain and preventing me from sleeping; I was in labor and did not even know it, another blessing for sure! At 2:30 a.m. the decision was made to proceed with the cesarean as soon as Richard could return to the hospital. My only disappointment was that my regular ob⁄gyn would not be there for the delivery. To feel like I had traveled so much of my pregnancy journey with one doctor only to have another deliver was disappointing but the babies were not going to wait for that scheduled 7:30 appointment!

Thus it happened at 37 weeks, on Tuesday, October 16, 2001, Daniel Harrison was delivered at 3:27 a.m. weighing in at 6 pounds 5 ounces and Emily Catherine came into our lives officially at 3:28 a.m. weighing 4 pounds 5 ounces. As soon as the doctor delivered Emily she recognized the signs of a baby with Down Syndrome and thus all the routine tests to confirm it were scheduled; the tests included a close look at Emily’s heart since a murmur had been detected and a large number of children with Down Syndrome also have heart problems. The tests confirmed that Emily was born with a congenital heart defect and Down Syndrome. She, however, was not born with the Dandy Walker Syndrome! After so many ultrasounds indicating the Dandy Walker Syndrome, I truly believe this was one of the many miracles surrounding the conception, births and lives of our wonderful Daniel and Emily.

October 16th was a very long, happy day. We were happy the babies were finally here and our families came to the hospital to see them and be with us. The day ended with a long, complicated explanation by a cardiologist about Emily’s heart defect. Daniel was moved to the regular nursery almost immediately while Emily remained in the NICU for what turned out to be 15 days. Daniel was also tested for Down Syndrome; the test was negative. The heart murmur they heard with him at birth was gone the second day. Emily was so tiny at 4 lbs. and 5 ounces but she was “healthy” in our eyes. She remained in the hospital not because she was on medications or had complications but because she needed to take a minimum amount of formula from a bottle each feeding for a complete 48 hours. After her wonderful nurses tested several nipples they found the one that worked and she was able to drink all the formula and was released on their first Halloween!

Once Emily joined Daniel at home our life with multiples began and as the saying goes, our lives were changed forever. Daniel and Emily grew and grew and we did our best to handle everything as well as we could in our new role as parents. It is so true what people tell you that you have no idea what is involved until you become parents yourselves. Emily began early developmental therapy before she was 3 months old; she had a remarkable therapist that taught us about children and also about parenting. We have pictures of Emily with her therapist which capture the special bond they shared.

Due to Emily’s heart defect we were cautioned by her cardiologist to avoid outings and crowds over winter. So, we selfishly spent a lot of time as a family of four at home! We were blessed in that Daniel and Emily were never sick; they played, they grew, they learned and they taught us about unconditional love. The majority of people we met would never have guessed that Emily had a massive heart defect. She was always smiling, laughing and very social. We kept in touch with out of town family and friends through photos and e-mail narratives. Each month I would send a “twin update” to everyone. They got to know Daniel and Emily and watched them grow through these monthly updates. Every month we took photos of Daniel and Emily sitting on a new set of blankets in our rocking chair. We received more than a dozen handmade blanket sets that became the background for the monthly photos.

Employment changes for my husband in 2002 led us to move to Wichita, Kansas, which turned out to be another blessing. We were in the city where my sister and her family live and less than an hour from my parents. Emily had a new set of therapists who were overjoyed with all of her developmental progress; she could sit and did a lot of simple tasks that they had not expected to see because of the Down Syndrome. I attribute her amazing progress to having her twin Daniel; he walked at 10 months so she was just trying to keep up with her brother! Emily’s new cardiologist was impressed with Emily’s good health and recommended that we proceed with her open heart surgery. I remember the therapist after hearing of Emily’s latest accomplishment of pulling up said, “She has a lot to do before her surgery”. The surgery was scheduled at Children’s Hospital in Kansas City for 13 days after Daniel and Emily’s first birthday. My parents were the only guests for the 1st birthday milestone since the surgery was so close and again we didn’t want either Daniel or Emily to catch something from visiting guests.

Sunday, October 27, 2002 was the day we drove to Kansas City; before we left our Wichita home we took photos of Daniel and Emily together in the rocking chair. At the time I’m not sure why I wanted to take the photos but I am so thankful we have them now. It was heart wrenching to leave Daniel and at the same time overwhelming to know that Emily was scheduled for open heart surgery. Daniel stayed with my sister and her family while my husband and I drove to the Ronald McDonald House in Kansas City. What a wonderful place and wonderful people; they were definitely another blessing in our journey. Monday was for tests and the surgery was scheduled for Tuesday, October 29th. The morning of the surgery we met the surgeon at 7:15 a.m. I felt remarkably at peace considering that this was the day Emily would have open heart surgery. I will always remember this meeting. The surgeon told us that he thought he could repair everything that they could see was wrong with Emily’s heart – somehow, I knew he spoke the truth! Next he said that he was 95% sure that Emily would not require another surgery in the future – again the feeling came over me that this man spoke the absolute truth! Lastly, he said that Emily would probably be ready to go home in 5-7 days – after this statement the feeling that this could be true did not come over me. After our meeting we went to the check-in area and as it turns out after her vitals were taken, my husband and I spent almost 3 hours with Emily in a little exam room. It was the last 3 happy hours that we spent with our beautiful, playful Emily.

They came to take her to surgery so we gave her hugs and kisses and told her we loved her. My husband handed her to the surgeon’s assistant and we followed them down the hall as they headed toward the operating room. My husband lives with the memory of seeing her look back at us; I did not see her do that and I’m not sure how I would feel if I had seen it. The surgery proceeded as scheduled and she was moved to the pediatric intensive care unit. Typically, the day following the surgery they bring these little patients out of the sedation. However, with our Emily they told us they were going to leave her sedated just a little while longer because her heart was not working as well as expected. One day turned into two, then three and on and on each day passed and Emily remained sedated. About a week after the surgery they scheduled her for a heart cath to determine if additional surgery was needed. I remember thinking that I hoped everything would be fine so that the surgeon would have peace that he had done all he could. The staff and doctors were remarkable and I truly believe they did everything in their power for our Emily; it was like she was one of their family. They did not want to give up on her in any way. The heart cath showed that everything had been repaired which was good news because we were told she would not have survived another surgery. However, it did not show why her heart was not functioning as fully and completely as it should. So, they continued to have her sedated and look for answers. In the end, the answer to this question evaded the medical team.

The days passed and we found ourselves on November 16th which was Daniel and Emily’s 13- month birthday. My prayer was that God not call her to heaven this day because I could not bear to celebrate the date of their birth each month as the date of her death. My prayer was answered and she did not die this day; however, it was the day she “told” us she was ready for us to let her go. In the afternoon while we were at her bedside, unbeknownst to each other, Emily squeezed my husband’s hand and my hand. Never ever before had this happened! When we discovered that she had done this with each of us, we knew it was time to let her go. We called my husband’s sister in Tulsa and she drove up to be with us. We spoke to the doctor on Sunday and told him that Emily was ready and we were ready to let her go. It is an experience like no other I have had in the sense that I was absolutely sure beyond a reasonable doubt it was what we had to do. The surgeon wanted to speak to us about what more could still be done before we disconnected Emily from the machines and so we waited till Monday. However, Emily was ready and throughout Sunday night her little body began shutting down on its own and when we arrived at the hospital at 6:30 a.m. there was only a few vitals left to follow on the monitor. I believe she was helping the doctors let go and telling them they could stop fighting for her because she was ready; when I walked into her room that morning I knew I was just looking at her human body, her soul was already in heaven. The machines were disconnected and at 9:04 a.m. on November 18, 2002, three weeks to the day that she had open heart surgery, Emily died in my husband’s arms.

Honestly, I could talk about Emily all day; she had such a remarkable life on this earth. We had so many people tell us how she touched their lives and even to this day when I tell her story I know she continues to touch people. She accomplished God’s plan in just thirteen months; I believe she is the lucky one for she has joined Jesus in heaven. I will eternally feel blessed knowing that God chose me to be her mother. I have told many people that I do not know how I would have survived losing a child if it were not for the fact that God blessed us with twins and Daniel needed us. I have never been angry with God over Emily’s death. I remember thinking after she died that her heart was now whole and ours were broken. I cannot be angry because I have always chosen to see my blessings and give thanks for them. I do have some ‘why’ questions however, like why did God choose us to be Emily’s parents, why did God bless us with such a beautiful child if she was going to die at thirteen months, why did we spend three weeks in the hospital with a sedated Emily. I answer most of them by looking at the ways Emily changed our lives and the lives of others. I know that I am a better and stronger person because I am her mother.

We have returned twice to Kansas City for memorials at Children’s Hospital. The last time was in September 2004 for a memory quilt dedication. A block that I created in honor of Emily’s memory was part of the quilt which is now hanging in one of the halls of the hospital.

The last three years have come and gone more quickly than I could have imagined they would pass. There have been so many moments that have been overwhelming like the first time I put Daniel in a mom’s day out program and there were only two girls and one was named Emily. Or all the first holidays without Emily here in person sharing them with us. Or the first time Daniel asked why Emily died. Or just the other day when a photographer taking Daniel’s four year old pictures asked if she should put Emily in the database because she saw I was wearing a necklace that has both of their names. Or all the times when Daniel mentions wanting to spend time with Emily. Or the other day when he asked what did Emily do for their birthday this year and did she have presents.

Not a day goes by when Emily is not in my thoughts. This summer we took a short trip to visit family and Daniel fell asleep in the van. Shortly, after falling asleep he opened his eyes and looked toward the front seat and was giggling. We spoke to him but there was no reply, he just closed his eyes and went back to sleep. It happened a total of three times after which I felt Emily’s presence with us in the van. I told my husband that I thought Daniel was talking with Emily and that I felt her with us. A few weeks after our trip, I was talking to Daniel and asked him about when he fell asleep in the van. I told him that he opened his eyes three times and he was giggling and that I felt Emily’s presence; he told me that she was tickling him! I truly believe that she will always be with him and share in his life journey.

Six months after Emily died I began sewing and selling purses; it was my 9-11 p.m. time when I could do something creatively and also talk with our Emily. I truly believe this hobby was part of my therapy to cope with not having her here physically. I also found a daily meditation book that was written by a woman who lost her daughter tragically, reading it also helped me heal a little each day. We had another job-related move last year to the Denver area and talking about our two children with new neighbors and friends, especially those in the mom’s group at our church, has helped to continue my healing.

This summer a neighbor’s young daughter had a baby girl; she was considering adoption but changed her mind. I felt Emily telling me it was now the time to give some of her clothes and things that I had packed away to this young mother. So, I feel I’ve passed another milestone in the healing process. I know there will be many difficult and emotional times in the months and years ahead and many, many more tears will be shed but at least now I can say instead of just happy moments scattered throughout the days we now experience happy days. I get through each day by trying to do my best for myself, my husband, Daniel and all those I encounter as we walk this journey on earth; I know for God my best is good enough.

I’ve had a lot of people ask if I think Daniel remembers Emily and I always reply that I think so but how can any of us know for sure. Daniel was with Emily inside me for 37 weeks and then outside me for 13 months. I’d like to think if he forgets a little of their first months together that all the beautiful pictures we have will help him remember. He is a bright, happy, energetic little boy that I believe has come to possess some of Emily’s personality also. I know as he gets older there will be more questions that I will answer as honestly as I can. I also know that I will continue to be blessed with this awesome peace that I have known since they were conceived.

Emily will always be my angel of inspiration and faith; Daniel is my angel of hope for a brighter tomorrow. They are such wonderful gifts from God; we are truly blessed.

When my niece Leah was eleven she wrote this poem and gave it to us in a red heart frame on February 12, 2004 as a Valentine’s Day gift.

From the day you were born
How special you were
You beautiful child
Gone in a blur

Your smile just seemed
To light up your face
And no one my dear
Can ever take your place

And those sparkling eyes
Never filled with doubt
Just always simply wondering
What life is about

But you’ll never be gone
Though in paradise you rest
We loved you a lot
But God loved you best

In Loving Memory of Emily H.
who returned home
November 18, 2002