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Tuesday, 05 June 2007 |
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I just finished reading some entries from a year ago. My face is wet with tears. What a precious time I had with Erika a year ago. With Daddy back in Iowa, and Grandma Mary and I holding down the New York/New Jersey forts, we had our hands full. But how thankful I am that Emma was able to spend a long day at the hospital, playing with her sister, just a day before “the call”. And how thankful I am that I was able to spend those last several hours with Erika all to myself. It is time I will never forget. We stayed up late (10 p.m.) the night before I received the call, watching Barney videos and eating popcorn (2 bags) in her bed. We made a mess but had the best time together. And I’m so thankful for the time we had together in the wee hours of the morning, cuddling, as she wanted me to hold her as she sucked her thumb and fell back to sleep, innocent of what was ahead for her that day. What a gift this time together was for me. I will treasure it always and thank God for knowing exactly what I needed in those final hours together.
The last few days, I’ve found myself needing to connect with the wonderful people and staff we met in New York, who shared the darkest days of our lives with us. As most of our family and all of our friends were a thousand miles away, these strangers came into our lives as blessings from God. It appeared to me that God had surrounded us with families who also had unbelievable situations to overcome. I felt somewhat “normal” in their midst. Something our family hadn’t felt in quite some time. I had such a peace and felt much encouragement about where we were and what we were doing. I can remember some days not even thinking about the transplant and just resting in the arms of Jesus, letting Him be in control. I felt so comfortable being with Erika. I was truly able to enjoy her because unlike much of the time at home, now I wasn’t the only one who was responsible for her care. It was as if the hospital provided me with the confidence in knowing they were there to care for her, and I was there to be able to enjoy her. I didn’t have to fear whether or not I would be able to give her CPR successfully or have to go through a seizure alone that may end her life. I was beginning to realize just how amazing it was that something more significant didn’t happen while she was in my care. It seemed as if Rich was usually around when a situation with Erika got to be really intense. I’m reminded of the two times we thought we were going to lose her prior to our admission to the hospital in New York. The first night we arrived at the hotel in New Jersey, Erika didn’t want to put on her pjs and got very upset. She had a huge seizure, and we didn’t know if she’d come around from it. Then, the next episode was at the blood draw. She got herself so worked up from the needles and blood (and rightly so as a 4 year old), that we thought she was going to die. I truly can’t believe how much we were “living on the edge” with her.
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Tuesday, 15 May 2007 |
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I’m trying not to focus on the significance of this day. So, Mother’s Day was pleasant. We spent the weekend planting flowers at Erika’s stone, tending to her garden here at home, going to church and spending time with our mothers. As I was walking around the cemetery Friday evening, God comforted me with the fact that death is a part of life for everyone. And even though death may seem to come too early for some, all deaths come at the perfect time in God’s eyes. I’ve come to learn that the only people still living are the ones whose mission is not complete. Erika’s mission in this life was complete. Now it’s our goal to complete our mission so we can share in the riches of the life to come.
Once again I want to reflect upon and capture our memories from a year ago. I want Erika’s siblings to know her story as completely as possible. So it was a year ago today that we continued the second leg of our journey to NYC. We had to drive 17 hours (1,000 miles) in two days because Erika’s condition was not conducive to flying. The altitude would have been too tough on her pulmonary hypertension, and we didn’t want to jeopardize her already fragile condition.
I remember this trip being one of great hope as we learned the NYC specialists would take a look at Erika's case, and maybe even be able to help her. It was truly our only hope as the doctors at the University of Iowa and St. Louis Children’s Hospital told us they had done pretty much all they could do for her. Our spirits were restless as we couldn’t just wait around for her to die. We felt God had opened this door to NYC, and we were putting our trust in Him to see us through. (Remember, we received confirmation from the NYC pulmonary hypertension specialist of her willingness to review Erika's records, within 21 minutes of sending our initial email, on a Sunday.)
Erika and I spent most of the trip watching Barney DVDs, drawing, reading, snacking, playing musical seats, resting and keeping our eyes on our prize, Daddy. It was an adventure for us; our mission was to help Erika the best we knew how. Our plan was to take a week and have her undergo a heart catherization to determine whether they could get her to qualify for a heart transplant. We figured we would be bringing her home in a week to decide our next steps in her care. While we were there, we realized she may not have the time to return home to figure things out.
Today, Evan and I were outside swinging in “Eka’s swing”. My mind drifted from thought to prayer as I began a prayer of thanksgiving; for the beauty of the day, our healthy bodies, the miracle of life growing within me, the freedom to be able to enjoy the warm breeze blowing through our hair and the four and a half years we had with Erika. In my readings, I’ve come to realize Tommy Lasorda, former manager of the LA Dodgers; Lou Henson, former basketball coach at U of Illinois; Zig Ziglar, successful motivational speaker, along with most other parents who have lost children, if given the option, would not trade their years of joy with their child for the absence of their death and pain. This is true for us as well. I then started to pray for all the families who were sitting in the U of I pediatric specialty clinic, waiting to learn more about the condition of their little ones. I can remember sitting there numerous times wondering how many folks sitting there were burdened with the possibility of losing their child. Wondering if there was anyone with a situation that was worse than ours. Wanting to trade Erika’s condition for anyone else’s. What heavy feelings. Then my prayer drifted to all those we know who have had to endure amazing medical journeys. Our paths would have never crossed these dear ones had we not gone through our own medical journey. Life has definitely taken us on a much more meaningful and purposeful path. Our perspective on everything has changed or intensified. I thought it profound what the author of “Transcending Loss” said, “The fact that humans can be broken and become stronger at the broken places is one of the most profound and touching of all miracles.” With God’s help, we are becoming stronger. And we most definitely feel encouraged by your many thoughts, prayers, posts, emails, cards, and thoughtful gifts. We appreciate your continued support as we channel our energies of this life into accomplishing the mission God has placed before us. God is guiding us all; do you know your mission?
Looking for His daily guidance,
Traci & family
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Thursday, 10 May 2007 |
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Evan and I listen to worship songs and lullabies every day at nap and bed. This song caused my spirit to be sensitive today. As I listened to the words, I think of my children, particularly Erika. As the song goes on, however, my perspective changes to what my mom would sing to me. The song is called “Hold On to Jesus”. |
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Tuesday, 01 May 2007 |
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Yesterday was an Erika day for us. With the warm air, sunshine and very little wind, she would have been able to spend much of the day outside. It was so peaceful to be out, near Erika’s garden with tulips in bloom, listening to her chimes, seeing her lavender shoes next to our front door, swinging Evan and listening to him sing. If you ask him whose swing he’s in, he answers “Eka and I am (Evan) swing”. |
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Monday, 23 April 2007 |
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It was two years (and three days ago, to be exact) that we first learned of Erika’s condition, restrictive cardiomyopathy and pulmonary hypertension. It was a parent’s absolute worst nightmare; to be told that your child has a life threatening condition, and there was little anyone could do for her. This news came two days before I was scheduled to have a c-section with Evan, our third. The cardiologists gently told us the reality of Erika’s condition but advised us to try as hard as we could to put these findings out of our mind for a month, so we could enjoy the birth of our little boy; and in a month, we would begin treatment and the long road ahead. |
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Saturday, 14 April 2007 |
Even though we continue to have our tearful moments, a tremendous amount of healing has been poured out upon us.God’s love and goodness are all around and becoming more recognizable to us. A friend and I were talking, God is bringing love and goodness to us all, however, we don’t always slow down long enough to recognize it on a daily basis. | | | | | |
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A Mother's Heart