Nearly a year ago Melanie had contacted me when pregnant and desiring encouraging support, as in utero her daughter was diagnoised with Trisomy 18. She and Mike needed HOPE and hope was something I knew we as a community could give!! The Ritzman's were embraced by our wonderful T18 community and many of you contacted, befriended and supported them as they awaited and then welcomed their daughter Olivia. The journey of T18 is so varied and we each our grateful for every moment no matter how short or long we have with our miracle child. Thankfully the Ritzman's enjoyed their daughter for 7 months however sadly Olivia passed away yesterday. Mike and Melanie I am sending my heartfelt prayers to you and your family. I pray that the Lord will bring your family comfort and peace during this time. Below I've posted (with permission)a copy of the e-mail I received from The Ritzman's on Monday, regarding their miracle daughter Olivia.
Sad news from Mike and Melanie...
Hello Everyone,
I wanted to let everyone know that Olivia passed away earlier this morning at 1:45am. Yesterday afternoon we decided to call hospice to help manage her pain. Serveral people were able to stop by last evening and visit with Olivia. At 11:30pm last evening, Melanie and I were in bed wondering whether Olivia would make it through the night. Shortly, thereafter we received a call from her nurse to come immediately. Melanie and I spent the remaining moments holding, loving, kissing, and crying with Olivia as she passed from her mother's arms into the arms of a waiting Heavenly Father.
Olivia is now completely free from the Trisomy 18 that has plagued her body.
Please pray for us as we deal with Olivia's death. Please pray for us as we help the children deal with Olivia's death.
Below is the obituary that will be in tomorrow's Lancaster paper.
Olivia Joy Ritzman, daughter of Michael & Melanie Ritzman of Christiana passed away at home on Monday, September 27, 2010. She was born in Children's Hospital of Philadelphia on February 23, 2010. Olivia Joy was born with Trisomy18 known as Edwards Syndrome. For her parents it was a privilege to love and care for her for the 7 months that God blessed them with her. Surviving besides her parents are 9 siblings: Tori, Alan, Katherine, Jacquelyn, Lucas, Elizabeth, Steven, Gabriel and Zoe Ritzman. Also surviving is a grandfather I. Glenn Ritzman and uncles and aunts. A memorial service will take place from Calvary Monument Bible Church, 1660 Mine Road, Paradise, PA on Thursday, September 30th at 11 a.m. with Rev. Robert M. Reid officiating. The family will greet family and friends following the service. The interment will be private. In lieu of flowers contributions may be made to The Fleming Foundation, c/o Mennonite Foundation Inc., 201 East Oregon Road, Suite 103, Litiz, PA 17543-7440 to help other families financially care for special needs children. Arrangements by the Shivery Funeral Home, Christiana & Paradise. shiveryfuneralhome.com
Thank you for all the prayers. If any of you have been forwarding my emails to others, please feel free to do so with our email attached. Please feel free to share any personal feed back.
Mike
I also recently learned that Mallorie Rose passed away last week. Please keep her family in your prayers too. A link to her webpage is on the side , if you would like to learn more about Mallorie Rose.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Tuesday, September 28, 2010
Monday, September 13, 2010
Alyssa's 5K Key Note Speech
Just wanted to share (better late than never..hopefully) the speech I read at our Alyssa's 5K Trisomy 18 Awareness Event back in July. Alyssa's is doing well, she did have a serious respiratory infection that started a few days after the 5k that lasted till mid-August. Yet we are back on track. I'll be sure to update more soon!!
The Shihadeh Family (member #7 to arrive in October)
Alyssa laughing with her daddy...
As many of you know once Alyssa was diagnosed the doctors offered us little to no hope that she would survive. In fact it seemed as though the instinctive drive that doctors have to solve/fix OR remedy complex issues vanished as soon as the realization that our daughter had Trisomy 18 surfaced. Their purposes then became preparing to withdrawal life saving measures and dissuade us from thinking that our daughter would be coming home. With the support of our Pastor and his wife, along with a host of friends, family and our church family we prayerfully moved through those first days and weeks; finding small encouragements and weaving together the understanding that with faith and hope we would persevere.
Much like many other T18 families the term “Incompatible with life”; surfaced early on in our child’s life The phrase burned into my brain, as I couldn’t comprehend how the medical community could so matter of factly determine that optimism was not reasonable in connection to any diagnosis; let alone one that directly affected our child. We knew of the statistics and understood the grim situation but not to have ANY hope?? In time I realized that if we had allowed the doctors’ firm assertions that our child would not survive our hope would have diminished; we would have spent our first year of Alyssa’s life waiting for her to die. Instead, because of hope we enjoyed her as much as we could.
I’m not saying that those early days were easy by any means, we (I) was virtually cut off from the outside world in order to protect our daughters health; as a simple cold could be life threatening. We did have a few scares and many concerns; because of hope we were able to celebrate every milestone; literally counting and being thankful for each day. At day 189 I realized I needed to outwardly exercise a little more faith and began acknowledging monthly “birthdays”. This phenomenon~ counting days lived~ is something many T18 families do.
Families respond to devastating illnesses in a variety of ways and if a family doesn’t have adequate spiritual or emotional/social or concrete resources their course will be much different than ours; as the way by which they manage that illness will be based solely on the medical communities opinions of that diagnosis~ and if that opinion is Incompatible With Life. Just imagine what that family might elect to do...or might not do….
When we left the hospital Alyssa was placed on Hospice and we had to wrestle her medical team in order for her to come home with an APNEA monitor (explain what it is). We were not provided any direction as to what to do if our daughter should survive b/c of course in their minds she wouldn’t. I firmly believe that had they offered us “hope” through practical measures like connecting us to other T18 families, the T18 community through organizations like SOFT or The Trisomy 18 organization, by providing updated medical information regarding the T18 vs. providing us facts over 15 years old; trust, in our daughter care providers would have been built and it would have significantly reduced our fear. Mind you we had some wonderful health professionals involved in Alyssa’s care and we are so grateful for them and the work that they do. Our goal is not to criticize dedicated nurses or doctors. We greatly value them. Our goal is to change the perception of Trisomy 18 Awareness.
The purpose of raising T18 awareness is not to find a cure; unfortunately because this is a chromosomal error there isn’t one. The purpose is to provide HOPE to other families affected by this syndrome (or like syndromes), and to change the perception of Trisomy 18 for the medical community. To this day when we go to an appointment for Alyssa, her doctors are stunned by her “good health”. Even though Alyssa is screen every 6 months for cancer, and has a life threatening lung condition amongst other health concerns; SHE IS in good general health. When we meet a doctor for the first time, the often repeated question is…Are you sure she has full T18? Do they have the correct diagnosis? Doctors are genuinely surprised to meet Alyssa. I am often asked about her condition by doctors as they want more insight.
Sadly, just like many parents of special needs kids we must be warriors battling health –providers or insurance companies to get the adequate care or resources for Alyssa. It is heartbreaking to know that lives saving medical procedures are at times denied due to a T18 diagnosis. With increased awareness to the many miracles of Trisomy 18 the level of shock of “long term survival” could be minimized and measures to increase the quality of life for a T18 baby/child could be maximized. My HOPE is that the phrase Incompatible with life will disappear, with updated research of this condition and with increased knowledge of life proof miracles like Alyssa.
As I mentioned there is no cure for T18 and Alyssa is not healed from them this syndrome. We live each day with the knowledge that our daughter is medically fragile and is “out living “her prognosis. It is our faith in God that strengthens us; it is our hope in one another and each of you that comforts us. Hope Matters.
Closing
There are few things in this world that can be considered a great equalizer to the human condition; having a special needs child is one them. It crosses race/socioeconomic/and gender lines. In our brief journey we have found that many families regardless of where they were prior; once faced with this type of situation experience similar struggles. The financial struggle to provide not the basic needs for our child but the tools that will assist our child to live a quality life. The proceeds from today will be used to assist in Alyssa’s care. There are many simple yet expensive products/ developmental equipment and toys out there that would make our day less complicated and allow Alyssa to be more independent. Often these are things which aren’t covered through insurance. It is family to family support that knits our community together and without this support; today couldn’t have happened. Our gratitude goes to Kim Small and her family, the Kaptur family, the Judge family and many other families and individuals who’ve showed their support by donating to our race today. Our family again thanks all of our sponsors, volunteers and you all for your abundant support.
Former Senator Rick Santorum and wife Karen also have a daughter with Trisomy 18. Their daughter Bella recently celebrated turning 2 also. In a recent article Rick wrote: Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children? All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child.
We echo those sentiments for our Alyssa. As her dad often says: She is a special girl we love so much and she has made our family stronger than ever. She loves kisses, hugs, music and T.V.! She is a joy. Finally before letting you go and get cooled off from this heat I’d like to express my gratitude to my husband Ed, our kids Nathen , Ethan, Jessica and Alyssa for allowing so much of our private lives to be shared. Assisting in the organizing of this event is truly humbling and healing for me as her mother. On behalf of our entire family thank you for coming out; while today was for Alyssa; please remember that it was about increasing awareness of Trisomy 18 and I hope that we met that goal!! Thanks so much be safe and we will see you next year!!
To Read more of Rick santorum's article go to: htp://www.philly.com/inquirer/opinion/20100505_The_Elephant_in_the_Room__Two_years_worth_every_tear.html#ixzz0zSaEm
The Shihadeh Family (member #7 to arrive in October)Alyssa laughing with her daddy...
KEYNOTE SPEECH:
In promoting this race we naturally shortened the event name to Alyssa’s 5k, as it just rolled off the tongue a little easier. However now it’s time to highlight the underlying theme of Alyssa’s 5K which is Trisomy 18 Awareness and the message that Hope Matters!
In promoting this race we naturally shortened the event name to Alyssa’s 5k, as it just rolled off the tongue a little easier. However now it’s time to highlight the underlying theme of Alyssa’s 5K which is Trisomy 18 Awareness and the message that Hope Matters!
As many of you know once Alyssa was diagnosed the doctors offered us little to no hope that she would survive. In fact it seemed as though the instinctive drive that doctors have to solve/fix OR remedy complex issues vanished as soon as the realization that our daughter had Trisomy 18 surfaced. Their purposes then became preparing to withdrawal life saving measures and dissuade us from thinking that our daughter would be coming home. With the support of our Pastor and his wife, along with a host of friends, family and our church family we prayerfully moved through those first days and weeks; finding small encouragements and weaving together the understanding that with faith and hope we would persevere.
Much like many other T18 families the term “Incompatible with life”; surfaced early on in our child’s life The phrase burned into my brain, as I couldn’t comprehend how the medical community could so matter of factly determine that optimism was not reasonable in connection to any diagnosis; let alone one that directly affected our child. We knew of the statistics and understood the grim situation but not to have ANY hope?? In time I realized that if we had allowed the doctors’ firm assertions that our child would not survive our hope would have diminished; we would have spent our first year of Alyssa’s life waiting for her to die. Instead, because of hope we enjoyed her as much as we could.
I’m not saying that those early days were easy by any means, we (I) was virtually cut off from the outside world in order to protect our daughters health; as a simple cold could be life threatening. We did have a few scares and many concerns; because of hope we were able to celebrate every milestone; literally counting and being thankful for each day. At day 189 I realized I needed to outwardly exercise a little more faith and began acknowledging monthly “birthdays”. This phenomenon~ counting days lived~ is something many T18 families do.
Families respond to devastating illnesses in a variety of ways and if a family doesn’t have adequate spiritual or emotional/social or concrete resources their course will be much different than ours; as the way by which they manage that illness will be based solely on the medical communities opinions of that diagnosis~ and if that opinion is Incompatible With Life. Just imagine what that family might elect to do...or might not do….
When we left the hospital Alyssa was placed on Hospice and we had to wrestle her medical team in order for her to come home with an APNEA monitor (explain what it is). We were not provided any direction as to what to do if our daughter should survive b/c of course in their minds she wouldn’t. I firmly believe that had they offered us “hope” through practical measures like connecting us to other T18 families, the T18 community through organizations like SOFT or The Trisomy 18 organization, by providing updated medical information regarding the T18 vs. providing us facts over 15 years old; trust, in our daughter care providers would have been built and it would have significantly reduced our fear. Mind you we had some wonderful health professionals involved in Alyssa’s care and we are so grateful for them and the work that they do. Our goal is not to criticize dedicated nurses or doctors. We greatly value them. Our goal is to change the perception of Trisomy 18 Awareness.
The purpose of raising T18 awareness is not to find a cure; unfortunately because this is a chromosomal error there isn’t one. The purpose is to provide HOPE to other families affected by this syndrome (or like syndromes), and to change the perception of Trisomy 18 for the medical community. To this day when we go to an appointment for Alyssa, her doctors are stunned by her “good health”. Even though Alyssa is screen every 6 months for cancer, and has a life threatening lung condition amongst other health concerns; SHE IS in good general health. When we meet a doctor for the first time, the often repeated question is…Are you sure she has full T18? Do they have the correct diagnosis? Doctors are genuinely surprised to meet Alyssa. I am often asked about her condition by doctors as they want more insight.
Sadly, just like many parents of special needs kids we must be warriors battling health –providers or insurance companies to get the adequate care or resources for Alyssa. It is heartbreaking to know that lives saving medical procedures are at times denied due to a T18 diagnosis. With increased awareness to the many miracles of Trisomy 18 the level of shock of “long term survival” could be minimized and measures to increase the quality of life for a T18 baby/child could be maximized. My HOPE is that the phrase Incompatible with life will disappear, with updated research of this condition and with increased knowledge of life proof miracles like Alyssa.
As I mentioned there is no cure for T18 and Alyssa is not healed from them this syndrome. We live each day with the knowledge that our daughter is medically fragile and is “out living “her prognosis. It is our faith in God that strengthens us; it is our hope in one another and each of you that comforts us. Hope Matters.
Closing
There are few things in this world that can be considered a great equalizer to the human condition; having a special needs child is one them. It crosses race/socioeconomic/and gender lines. In our brief journey we have found that many families regardless of where they were prior; once faced with this type of situation experience similar struggles. The financial struggle to provide not the basic needs for our child but the tools that will assist our child to live a quality life. The proceeds from today will be used to assist in Alyssa’s care. There are many simple yet expensive products/ developmental equipment and toys out there that would make our day less complicated and allow Alyssa to be more independent. Often these are things which aren’t covered through insurance. It is family to family support that knits our community together and without this support; today couldn’t have happened. Our gratitude goes to Kim Small and her family, the Kaptur family, the Judge family and many other families and individuals who’ve showed their support by donating to our race today. Our family again thanks all of our sponsors, volunteers and you all for your abundant support.
Former Senator Rick Santorum and wife Karen also have a daughter with Trisomy 18. Their daughter Bella recently celebrated turning 2 also. In a recent article Rick wrote: Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children? All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child.
We echo those sentiments for our Alyssa. As her dad often says: She is a special girl we love so much and she has made our family stronger than ever. She loves kisses, hugs, music and T.V.! She is a joy. Finally before letting you go and get cooled off from this heat I’d like to express my gratitude to my husband Ed, our kids Nathen , Ethan, Jessica and Alyssa for allowing so much of our private lives to be shared. Assisting in the organizing of this event is truly humbling and healing for me as her mother. On behalf of our entire family thank you for coming out; while today was for Alyssa; please remember that it was about increasing awareness of Trisomy 18 and I hope that we met that goal!! Thanks so much be safe and we will see you next year!!
To Read more of Rick santorum's article go to: htp://www.philly.com/inquirer/opinion/20100505_The_Elephant_in_the_Room__Two_years_worth_every_tear.html#ixzz0zSaEm
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