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"Enjoy in peace the joy God is giving you, without worrying about the future. He is reserving for you, I am sure, new graces and many consolations." - St. Therese of Lisieux, The Little Flower

Jason and I started this blog to keep family and friends updated and share our story with others. We are so grateful for all of the support and prayers that we continue to receive.

I have added a couple of links explaining Potter's syndrome and some additional info.

Friday, August 20, 2010

Remembrance

Perhaps the most daunting challenge a writer ever faces is the task of writing about someone, or something, that cannot be described by words. I now face the doubly-daunting task of writing about both someone – my daughter, Therese – and something, the events and circumstances involving her coming into and passing out of our lives on Monday, August 16, 2010. As if this task were not insurmountable enough, I must face it at a time at which I am weary, weak, and exhausted from several months of battle that Therese, Angela, and I vigorously fought until the very end. Like a farmer or a gardener, the best that I can hope for is that at least a few of the seeds of thought that I am attempting to sow in this writing will sprout in the hearts and minds of others and, in blooming, successfully impress upon them the sense of joy, the sense of sorrow, and the sense of hope that Angela and I have experienced over the past few months.
When Angela and I first heard the news of Therese’s condition and that it was completely untreatable, we were devastated. Our world was shaken and the pillars of its foundation cracked as the massive weight of our agony fell upon us. We often asked ourselves seemingly rhetorical questions, such as “Why is this happening to us,” “Why is this happening to our baby,” “What have we done wrong,” and numerous other questions of this nature. I describe these questions as rhetorical because, at least on the surface, they do not appear to have answers. I, on the other hand, along with St. Thomas Aquinas, Aristotle, and numerous others, believe that every question has an answer, though we might not be able to ascertain it, understand it, or accept it. For if God infinite, and God is also Truth, the Truth is therefore infinite and no question is answerless.
You might ask how any of these considerations are relevant to why we’re here today. This is why: if the questions that we ask have no answers, then the suffering that we have endured is completely meaningless. Angela and I, however, do not believe that we have suffered in vain, nor that our suffering is meaningless.
After Angela and I first received the news of Therese’s condition and were able to regroup and gather ourselves, we took a deep breath and decided that we would fight alongside Therese and help her to bear her Cross as long as she needed us to. We knew that the journey would be long and arduous, certainly the most difficult of our lives; we knew the road would not be a smooth one of only joy and bliss, but a tumultuous path through dark, uncharted territory, full of unexpected twists and turns, winding inevitably to an uncertain and unknown destination. We were determined, however, that we could triumph over any obstacle or any evil that we might encounter along the way so long as we tactfully took each step together as a family, and thus as a team. To focus our efforts, Angela and I decided to set the following short-term goals:
1. To do everything possible to assure that Therese would be born alive;
2. To have Therese baptized; and
3. To have the opportunity to spend some time with Therese after her birth.
Because we knew that, absent a miracle, Therese’s time with us would be very short, we tried our best to make the most of the time that we had with her. We decided to give her a name – Therese Emma Lloyd. We named her after St. Therese of Lisieux, commonly known as “The Little Flower,” and Angela’s grandmother, whose middle name is Emma. We talked to her, we sang to her, and we prayed the rosary with her. She seemed to love the sound of organ music, especially the song “Ave Maria,” so we brought her to mass at the Co-Cathedral several times to let her hear the music. As soon as the organist began to play, she would become quite active – moving her head and legs as the music played. We like to think that she would have made good use of her exceptionally long fingers by becoming a pianist or an organist.
On several occasions, the doctors made remarks about what a fighter she was and how tough she must have been. Despite her condition and the numerous other factors that stacked the odds against her, she continued to grow and develop physically within the range for normal babies. The specialist that gave us the bad news told us that most babies with this condition die in the womb. Therese, however, did not seem to care too much for what the experts had to say. Indeed, she had her own plan, which was to be born alive and to meet her family. When she was born, it was no surprise to us that she looked just like her father, for we already knew that she had her father’s stubbornness and recalcitrance. She is, without a doubt, her father’s daughter.
As the pregnancy progressed, the doctors informed us that Therese was in a breech position and, because of the almost complete absence of amniotic fluid, she would not likely be able to turn to the appropriate position for a normal birth. The specialists advised against delivering Therese via C-section due to what they considered to be an undue risk to Angela. They reasoned, quite fairly, that the risk to Angela was not warranted because Therese would not survive for long, if at all. On the other hand, we knew that a breech birth, even if possible, would have been extremely traumatic to Angela and Therese most likely would not have survived such a delivery. After consulting with Angela’s OBGyn, Dr. Paul Cook, we decided that Angela would deliver Therese via C-section. Like Therese, we were firm in our resolve and were committed to achieving our goals.
I took a seat on a stool next to Angela in the operating room, and could not believe that the moment had arrived. The mood was tense and uncertainty filled the air. Fortunately, Dr. Cook and Dr. Milhelm lightened the mood by talking about how great the margaritas and Mexican food are at the original Ninfa’s on Navigation. Within minutes, Therese was born, alive as we had hoped. I immediately baptized her, and the nurses and I wiped her off so that I could quickly take her over to Angela. As I held her for the first time, she cried, but I rocked her and kissed her and put my index finger in her hand. She then stopped crying and opened her dark eyes, and for a moment time stood still as we gazed at one another and I told her that I loved her. I then took her over to Angela, and laid her across Angela’s chest so that Angela could hold her while the doctors closed Angela’s incision. I leaned over Angela and cushioned Therese’s head with my hand, and as Angela and I looked at Therese in amazement and stroked her chubby cheeks, we had finally accomplished the goals that we set months earlier and we were happy.
As Miss Jennifer snapped photo after photo of the three of us, I walked alongside Angela and Therese as the doctors rolled Angela along in her bed back to her room. Whenever we walked into the room, all of our family and friends that were waiting with bated breath in the room adjacent to Angela’s stormed in to great us. Everyone was happy and no less than 20 people huddled closely and stood on chairs and sofas to catch a glimpse of the newly-born Princess, whose luminous radiance emanated throughout the room like the blinding light of a supernova illuminates the heavens. Therese was able to meet her grandparents, numerous aunts and uncles, and several of her family’s closest friends.
Approximately one and a half hours after her birth, Therese passed from this life and into the next. Though her time with us was short, she forever touched us and will forever live with us in our hearts and in our thoughts.
Angela and I consider August 16, 2010, the very best day of our lives. Some might also consider August 16 the very worst day of our lives, but the worst day was actually the day on which we first received the news of Therese’s condition. We will always remember August 16 as a day of joy. The outpouring of support that we received, and continue to receive, from our family, friends, and colleagues is truly remarkable. One of the lessons that Angela and I have learned from this experience is that no matter how bad the world might seem at times, and no matter how badly certain of our fellow men might behave, there are a lot of truly remarkable people in this world and in our lives who will always be there for us in our darkest and most trying hours. Angela and I cannot even begin to thank all of our family and friends who have sacrificed so much and offered us their unwavering support. The world is a beautiful place, as are its people, and they are all worth fighting for.
Growing up, my grandma always told us, “If you don’t bear the Cross, you can’t wear the Crown.” I do not believe that I ever fully understood what that meant until this week. Angela and I did not bear the Cross, but Therese did, and just as Simon of Cyrene assisted Jesus in carrying his cross, we did our very best to help Therese carry her cross. When something like this happens to a person, it can either strengthen his faith in God or weaken it. Those who are not able to find answers to the seemingly-rhetorical questions that I mentioned at the beginning of this writing typically experience despair and a weakening of their faith. Those who are able to find answers to those questions, or at least come to terms with the fact that there are answers, though we might not be able to ascertain or understand them in this life, experience hope and a strengthening of their faith. For Christians, there is a reason that the Cross is the symbol of our faith: the Cross symbolizes both the gravity of sin and the suffering that Christ endured to atone for our sins. It is only through the Cross, and thus suffering, that we become closer to Him. Suffering is an almost alien concept in our society, which makes it all the more difficult for us to understand why we suffer and what our suffering means. What pop culture fails to take into account, however, is that it is only through suffering that we are able to experience true joy, for the road to Heaven passes through Calvary. The short time that Angela and I had with Therese is, at least for us, worth an eternity of suffering.
I hope that some of the seeds of thought that I have attempted to sow in this writing will sprout in each of you and bloom into an understanding of what Therese is like, and how Angela and I will forever cherish the precious moments that we spent with her during her short life. Therese will always be our “Little Flower,” our Saint, who watches over us from high above. Flowers are beautiful, and although they are delicate, they are also able to sprout in the most unusual places, even in rocky ground with little or no soil, just long enough to bloom and share their beauty and their life with the rest of the world. If you remember nothing else from this writing, remember that Therese, our Little Flower, has bloomed, and has left with us an image of angelic beauty that will never wilt, wither, or die.
Although she is no longer with us on this earth, she is still our daughter and we are still her parents. We will always be a family. Although the grief is still very near and we have not had time to reflect upon and digest the events of this week and the past few months, with each day that passes I become more and more convinced that my grandma’s words of wisdom offer the best answer to the seemingly-rhetorical questions that we repeatedly asked ourselves throughout this journey: “If you don’t bear the Cross, you can’t wear the Crown.” The nice thing about having a princess as a daughter is that, at least in a way, it makes me feel like a king and it makes her mother feel like a queen. We hope that someday, whenever our time on this earth is over, we will be worthy of wearing the Crown of eternal Glory that Therese now wears in Heaven.

5 comments:

  1. There are no words...you said it all Jason, so beautifully, so courageously.

    All our love and prayers to you.

    Kimberly

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  2. I heard about your family from my friend Deb Storm. We are neighbors at Sargent, Tx. There are no words sufficient enough to comment on what I've read in this journal. I can only say that I truly believe others could benefit from this story. Your faith and courage is such a testiment to God's love and promise, that all answers to all questions will be answered in His time. I hope that you will consider publishing this journal, or using it as the inspiration for a book about this 9 month life of a child and her parents love. I truly believe that your story will help so many, not just dealing with Potters but dealing with any "loss". I hate that word because you haven't lost her, you know exactly where she is, and you may have held her for moments, but a mother's (parent's) love is timeless. It has certainly helped me, in a way no one else could understand. Thank you, and God bless you and your family. What a blessing for your next child to be able to read about his/her sister. Jan Hartfield

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  3. Jason and Angela,
    Larry and I want you to know that our Love and prayers have been with you since we learned of Therese's condition. We have kept up through your parents and your blog. Your Remembrance is so Beautiful and should be published for future parents in the same situation. We continue to pray for your strength and peace. You have an Angel safe and happy in heaven. We Love You! Larry and Tena Kocurek

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  4. I am absolutely speechless, you're writing is amazing and has touched my heart! Therese was a special baby sent here for a purpose. You are both in my thoughts and prayers.
    Resi
    (Family Friend of Debbie and Ronnie)

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  5. I can hardly type this out through my tears. Therese is a beautiful angel and I know she loves her mommy and daddy. I have felt the pain you have gone through with the loss of an angel. My strength could only lie with the knowledge that God's will be done. Your strength , courage and faith is only possible through the power of our Lord.

    Jenn

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