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Masterpieces 
"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you, plans to give you a hope and a future."
Jeremiah 29:11
Click here to read our Journal
Welcome to our The Kocourek Family Web Page. It has been provided to keep people updated about our special daughters. (pictured Annalies and Kristen)
Annalies and Kristen have a Primary Mitochondrial disease and consequently, many secondary problems to deal with.
Quote from UMDF: "Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems."
Kristen also has a diagnosis of Congenital Central Hypoventilation Syndrome (CCHS). CCHS CCHS, Congenital Central Hypoventilation Syndrome, is a disorder of the central nervous system in which the autonomic control of breathing is absent or impaired. A CCHS child's respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is typically sluggish during awake hours and absent (to varying degrees) during sleep and serious illness or stress.
While most CCHS children breath adequately, though shallowly, while awake, they do require observation for their respiratory status, and, they require mechanical ventilation for sleep or illness. Yet while the health issues initially appear daunting, with appropriate home care, family support, and careful medical supervision, these children can lead fulfilling and productive, near-normal lives.
God has blessed us richly not only with our thriving children but also with precious supportive friends and family like you! Thank you for your interest in our journey.
Our lives revolve around the care of our children. We currently need your help to pay for the expensive mitochondrial disease cocktail supplements, uncovered medical expenses, travel for medical care and equipment for Annalies and Kristen. Currently those expenses are NOT covered by our insurance or Medicaid.
We don’t want to be competing with other families for donations, but there are so many kids who need help. What does that say about our society? Evidently, there isn't enough assistance to provide what families actually need during a medical crisis. How many millions of dollars have the Presidential candidates raised so far for their campaigns? The last I heard was that Hillary raised $26 million in the first three months of her campaign. What is wrong with this picture? Maybe the next President needs to develop a comprehensive national health care program. Anyway, we find ourselves in a position where we need many people offer or volunteering to help us.
In thinking about tragedy and sadness, I am thankful to say; in those places is also compassion and love. I think compassion is one of human's greatest gifts. It can spread like wild fire and affect everyone it touches. I'm thankful because this website has shown me the compassion living in everyday circumstances and in ordinary people. I really do treasure it. We really appreciate any help you can give for our girls with the overwhelming medical bills.
A fund has been set up to assist our family. For information regarding ways you might assist our family, please contact us by email. Thank you.
Happy mail welcomed: The Kocourek Family PO Box 753 Worth, IL 60482
Journal
Tuesday, September 23, 2008 12:51 AM CDT Summer is over and I’m reflecting on all that has transpired over the past few weeks.
Life is precious – truly. I feel like a honey bee in a field of flowers. A bee can’t collect nectar from the field as a whole. But, if he just takes one little droplet at a time, using all the strength he has, carrying all the weight he can – eventually nectar will get moved to the hive and flowers pollinated. So – I am learning to daily (hourly, minute by minute) work on that nectar. And, my reward will be for me the same as the honey is to that bee. And, even though the bee’s reward will be in little, teeny, tiny pieces, my reward will be whole and abundant. My point is – life is good. And, God gives us the strength we need to carry each day’s burdens, and the spirit to celebrate each day’s joy!
The family is one of nature’s masterpieces — George Santayana
The word “masterpiece” can mean any great work of art, a “tour de force” in any medium conjuring many different images but for me I instantly think of a giant canvas, a painting, a masterpiece of light, color, texture and contrast. Our family seems much like a masterpiece in progress, always changing, always growing, always adding more light, color, texture and contrast and this weekend its artists were hard at work adding to the taught-framed fabric of our masterpiece. Last Friday our canvas was splashed with the colors of love, joy, beauty, gratitude and even a little adventure as we gathered at my cousin’s home. It was an amazing evening a time of renewal and refreshment! The evening was just magnificent and filled with true love for one another and for the gratitude we all felt because we were together, our family was complete. We enjoyed a delicious barbeque and each other’s company. It was evident that our families were meant to be joined together on this wonderful day. The laughter, tears and camaraderie were unmatched as we shared the highlights of time since we last gathered. Tom and I we will always treasure the memories of a special evening that added such richness to our canvas and further filled our family’s masterpiece with life, love and hope for the future. We are blessed beyond words.
It is weekends like this one— a little vessel of wonderful adrift amongst the hurricane of medical challenges— that keeps us going. (Similar to the challenges facing my cousin Glen and the massive cleanup confronting him, recognized after viewing the photos of the hurricane damage in his community). It is weekends like this one that steady us for the days and weeks ahead and all that they might bring. It is weekends like this one that send us into another week a little braver, a little less terrified and a lot more hopeful. So, when people ask me, “how we live with chronic disease and have normal lives? I tell them that normal is in the eye of the beholder; it is how you define it not how it defines you. We are doing what we can, with what we have and we are doing it right where we are!
So life really is a series of events that are normal, absurd, fantastic, average and extraordinary all strung together in rungs that are endlessly intertwined. Somehow we all connect in this intricate web affecting those we have never even met. And even in those moments of sadness, frustration and hopelessness there is light, awareness and joy.
Juxtaposition: the act or an instance of placing two or more things side by side. As autumn days roll on, our lives continue to be a juxtaposition of medicine and miracles as we strive to balance long clinic days with traditional fall activities, young adult style. Annalies and Kristen are amazing in their ability to navigate life. They move so gracefully from normalcy to the totally abnormal. Last week, just hours before being told that the abdominal x-rays were abnormal they were swinging outside at the park, all the while discussing the movies they want to see this fall. I wish I moved as beautifully between events as they do. As for what lies ahead…most likely a gyne related procedure (unless the neurologists fail to firm in their objections to hormone therapy), and still to be determined GI related changes. After that, more testing of course!! I will update when the decisions have officially been made and tests are complete and a new plan is formulated
I have been very concerned about how to word the medical portion of this update. Throughout this 18 year journey I have always had faith that I would be lead to make the choices that were best for Annalies and Kristen, always trying to honor them in the process of saving their lives. The discussions we had recently with Gynecology and Neurology have challenged the physicians, girls and I to think more seriously about life, reproduction and the risks associated with both. There are many people who feel that life is not worth living unless the quality of life is one of comfort and peace or consideration should not be given to potential risk verses potential benefits. That out rules many treatment options children with genetic based diseases, sick children and many more. If we believe that God created each and every living soul for a reason…then we believe that God created Annalies and Kristen just the way they are. So, it has been an emotionally taxing week with many unanswered questions.
It's strange how our perspective on one's situation transforms through time. Annalies and Kristen do have a way of presenting us with one conundrum after another—most of the results pointed to a future direction. So, what to do?? Well that was another week of talks, debates and decision making…thanks to good friends and brilliant medical advice from their team we, in the end, will decided to move ahead with some form of treatment to reduce excessive bleeding and try to improve GI function. The challenge is to determine what will ultimately be best: medication based treatment with significant risk or one of two surgical procedures with varying degrees of risk and outcomes. All surgical options have long term considerations in regards to child bearing, emotions, and anesthesia risks.
My words fail me as I try to express to you the gratitude we have in our hearts for the many, many acts of love and kindness you have shown us. Thank you so much for your continued love, support and encouragement for our family. It is always when we need it the most (which I know is no coincidence) that one of you calls, sends a card, shoots us an e-mail, leaves a phone message or humbles us with a generous gift. I have said it before, but I truly do not think you will ever know the impact you have on our daily lives. Please continue to pray that Annalies and Kristen’s health to improve, for our amazing team of doctors to have wisdom and insight that can only come from Him, and for Tom and me as we strive to keep our emotions in check and make the best possible decisions for both girls. This journey has been long and there are many days when it continues to be very difficult. I cannot tell you enough how much your love, support, faithfulness, and prayers mean to us. 1 Thessalonians 5:11 says “Encourage one another and build each other up, just as in fact you are doing.” You are such beautiful examples of this verse and the love Christ has for us. Thank you for being a cherished part of our lives.
Our family has been so fortunate, in so many ways during this long and incredible journey. One of the most amazing things is the friendships that have touched us along the way, both, at home and in Wisconsin, Michigan, Ohio and New York. The friends that we have made, those that share our life with Mitochondrial Disease and Congenital Central Hypoventilation Syndrome also share a bond from our hearts that is like no other. The double life that is so hard to lead, that makes you feel as though your always straddling a tight rope takes a step towards less difficult when you share it with friends, who for better and for worse, are just like you. And even though those friendships are new in comparison they sure do feel like a fit from a lifetime. I know the value and the blessing of that and it was clear to me, recently, as we shared some time with the several families in Michigan and Wisconsin, that we intuitively understood the bond that words could never define. There was such a juxtaposition of childhood innocence and ancient wisdom that was simultaneously, both, wonderful and startling. I found myself feeling that same connection with their beautiful mothers and fathers. A connection so tender that it should have taken years to nurture but conversely was woven in just months from one common thread—saving the lives of our children. I am grateful beyond words for the unspoken and shared understanding that I have with these mothers, these women that I feel privileged to call my friends.
Our spirits’ continues to soar as we faces each new day. Our greatest hope is that we remain able to make each day a GREAT DAY and that we are given the strength to travel wherever this journey leads us.
Enjoy your day! And, when you face the challenges that today WILL inevitably bring, just look at it as the drop of nectar creating delicious, sweet honey. Just move it one drop at a time, and enjoy the rewards!
With love and gratitude for all the weekends like the one spent with extended family,
Joanne and Family
Read Journal History
Hospital Information: Children's Hospital of Wisconsin
Currently HOME
PO Box 753 Worth, IL 60482
Links: http://www.umdf.org Mitochondrial disease Foundation
http://www.cchsnetwork.org CCHS Family Network
http://www.ecad1.org Service Dogs
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