The goodness shown to my family over the past year is just staggering. Seriously. Not only have we been the recipients of goodness beyond measure, but it has continued on and on. Over and over. Tangible things. People are still delivering delicious meals. Several times a week.
A year of mortgage payments given and a friend fundraised enabling payment of other bills. Wonderful hand me downs have come in. Classroom extras paid for, all year long. Shopping sprees for the girls which included new bathing suits. Laundry detergent delivered. Laptop given. Professional family photos taken. School supplies came in. Air conditioner fixed. New flooring installed in living room. Grant given for the girls to go to after school and summer care. Christmas gifts given in overabundance, six months apart. Two GALLONS of salon hair products now occupy our bathroom, a first ever in this household. Diapers and wipes continue to come in. Goodness surrounds us to the brim and then gushes over. Again and again and again.
Several weeks ago, as I drove to church, I began to panic. I had looked at my bank account and figured out that we have months left to pay our bills. Thoughts raced through mind. Should I try to find work again? If so, who could care for Hope and manage the at least weekly trips to Children's for on-going medical care? Could I work from home? Or part time? Should I sell my condo and find a place to rent with the equity we might have? Which would not be much given that our condo would be sold as an affordable unit to the next lucky buyer. We came home from church, and as we sat at our dinner table I saw a familiar face outside our porch. She held a yellow envelope. And inside it was cash which would almost cover another month of our mortgage. Several days later, another check came from a high school student who decided to give her first ever working check to our family, which completed the mortgage payment. I.am.not.kidding. Then two days later, another check arrived to cover another month of our mortgage. I had not whispered a word of my panic to anyone. Not a word. Even my BFF's never knew what my thoughts were on that Sunday morning. Only God knew. Just God. The same God who works through people. It is just astounding. And a huge reminder that God knows EXACTLY what we need. Always. And the goodness is just overflowing and overflowing.
Saturday, July 2, 2016
Wednesday, May 25, 2016
Six month liverversary!
Six months ago today I walked into the OR at Boston Children's Hospital holding my youngest daughter. I held her hand as they placed the mask on her face waiting until she fell asleep before leaving. Whispering that it was ok, that I loved her and would see her when she woke up. That her new hero liver had arrived and she was in good hands. As I left that OR to begin the 10 hour wait for the surgery to be completed, I said prayers of thanksgiving that the day had arrived. That she had made it. That her miracle was literally unfolding before my eyes.
Entering the family waiting room on the third floor I saw eyes and faces that mirrored my own. Fear, joy, thanksgiving, hope. Over the hours, families began to dissipate, until late afternoon when there were just two of us left. The family sitting next to me was awaiting the completion of their son's brain surgery. A procedure to remove half of his brain in hopes of curing the deadly seizures that were racking his body day in and day out. We both experienced enormous sighs of relief when our children were finished around the same time. And were taken to the same ICU where we would rejoice at our mutual surgery successes. His mom and I checked in on each other until we were both moved to the regular floor on the same day several days later. It was nice to have someone who knew the exact emotions I felt, at times without either of us even saying a word.
Hope's team has characterized her post transplant course as "rough". They have met and decided that due to all of her complications we are not to go to do volunteer orphanage work in China this summer as we had hoped. Just this week, Hope's liver function tests are again worse. We are back to weekly labs under a very careful eye of our team. Thankfully, they were able to rule out PTLD in her tonsils and adenoids this week, a huge mercy. That said, PTLD continues to be a real risk and we are having bimonthly checks of her lymph nodes, which is one of the primary spots of manifestation. There are times when the worry tries to sneak in, and I must purposefully focus on Him and live in our now.
Looking at my baby girl, no one would ever suspect that this battle is being waged in her body. She is so happy. She loves life and energetically explores and interacts without a care in the world. She exudes joy and draws people in. She is a miracle, through and through. A miracle for the world to see. We cherish the gift of life our donor has given to my precious baby, and take not a second for granted. Though our "rough course" continues without any end in sight, I would not change a single minute of it. She is worth it. We are living life. And we are so grateful to be able to live it.
Entering the family waiting room on the third floor I saw eyes and faces that mirrored my own. Fear, joy, thanksgiving, hope. Over the hours, families began to dissipate, until late afternoon when there were just two of us left. The family sitting next to me was awaiting the completion of their son's brain surgery. A procedure to remove half of his brain in hopes of curing the deadly seizures that were racking his body day in and day out. We both experienced enormous sighs of relief when our children were finished around the same time. And were taken to the same ICU where we would rejoice at our mutual surgery successes. His mom and I checked in on each other until we were both moved to the regular floor on the same day several days later. It was nice to have someone who knew the exact emotions I felt, at times without either of us even saying a word.
Hope's team has characterized her post transplant course as "rough". They have met and decided that due to all of her complications we are not to go to do volunteer orphanage work in China this summer as we had hoped. Just this week, Hope's liver function tests are again worse. We are back to weekly labs under a very careful eye of our team. Thankfully, they were able to rule out PTLD in her tonsils and adenoids this week, a huge mercy. That said, PTLD continues to be a real risk and we are having bimonthly checks of her lymph nodes, which is one of the primary spots of manifestation. There are times when the worry tries to sneak in, and I must purposefully focus on Him and live in our now.
Looking at my baby girl, no one would ever suspect that this battle is being waged in her body. She is so happy. She loves life and energetically explores and interacts without a care in the world. She exudes joy and draws people in. She is a miracle, through and through. A miracle for the world to see. We cherish the gift of life our donor has given to my precious baby, and take not a second for granted. Though our "rough course" continues without any end in sight, I would not change a single minute of it. She is worth it. We are living life. And we are so grateful to be able to live it.
Tuesday, May 17, 2016
Yes in Hope
People should always come first. Before anything else. That is my hope to teach my children. Which is not an easy task in today's world when there are so many other distractions and the message the world sends is to ensure self comfort and a big nest egg. I can be just as easily distracted thinking about the things of this world, whether that is a 3 bedroom instead of our 2 bedroom home, a college education or weddings for my children, or a vacation. However, I know I am not to put my priorities in these things, so I try not to. And it is hard.
I learned a few months ago that orphanages are desperately awaiting our teachings. And that an orphanage with perhaps some of the poorest of poor conditions has asked us to come. It's a place we have never been, with over 300 children in care. As I thought about this and considered the last year of my life, I think many will feel I would be more than justified in saying no. I can actually hear the encouragement to say no. Perhaps some would even beg me to say no. The excuses I could provide would be valid....I have a child who has had a liver transplant and is immune compromised, I am unable to work right now and we are down to our final less than a year's worth of mortgage payment savings, I have already done "enough". As I dig deeper into those excuses, I find that all of them propose putting something else before people who wait for help, whether that be fear, money, or selfishness. People who are in need. People who are in need of skills and ideas that can be shared. People who need to know that they are loved and valued because they exist in this world. I would be a hypocrite to want to teach my children that people come before everything and then turn around and say no. So, we say yes being fully afraid.
It is easy to fall into the trap of believing that someone else will step up. That someone else will say yes. That someone else will go. That someone else is better equipped. That someone else has more skill. That someone else should do it....
These thoughts may lead to a type of stagnation, with no movement forward and no help given. So I am trying to teach my children to avoid this trap and say yes despite our shortcomings.
When we were going through Hope's transplant evaluation, time and time again we were told the whole purpose of organ transplant for a slowly dying child was to live. To give the chance of living. Not to give the chance of living in panic. Not to wait in fear for rejection or lymphoma. But to live. Live now. So we say yes to living in today.
Today, we prepare. Today, we hope. Today, we say "send us, we will go". Today, we say "yes, we are willing to be present for people". Today, we are willing to be hands and feet. Today, we say yes. Because people always come first. If I can teach my children this, there will be no better nest egg to leave them with.
I learned a few months ago that orphanages are desperately awaiting our teachings. And that an orphanage with perhaps some of the poorest of poor conditions has asked us to come. It's a place we have never been, with over 300 children in care. As I thought about this and considered the last year of my life, I think many will feel I would be more than justified in saying no. I can actually hear the encouragement to say no. Perhaps some would even beg me to say no. The excuses I could provide would be valid....I have a child who has had a liver transplant and is immune compromised, I am unable to work right now and we are down to our final less than a year's worth of mortgage payment savings, I have already done "enough". As I dig deeper into those excuses, I find that all of them propose putting something else before people who wait for help, whether that be fear, money, or selfishness. People who are in need. People who are in need of skills and ideas that can be shared. People who need to know that they are loved and valued because they exist in this world. I would be a hypocrite to want to teach my children that people come before everything and then turn around and say no. So, we say yes being fully afraid.
It is easy to fall into the trap of believing that someone else will step up. That someone else will say yes. That someone else will go. That someone else is better equipped. That someone else has more skill. That someone else should do it....
These thoughts may lead to a type of stagnation, with no movement forward and no help given. So I am trying to teach my children to avoid this trap and say yes despite our shortcomings.
When we were going through Hope's transplant evaluation, time and time again we were told the whole purpose of organ transplant for a slowly dying child was to live. To give the chance of living. Not to give the chance of living in panic. Not to wait in fear for rejection or lymphoma. But to live. Live now. So we say yes to living in today.
Today, we prepare. Today, we hope. Today, we say "send us, we will go". Today, we say "yes, we are willing to be present for people". Today, we are willing to be hands and feet. Today, we say yes. Because people always come first. If I can teach my children this, there will be no better nest egg to leave them with.
Saturday, May 7, 2016
A year ago...
May 7, 2015
May 7, 2016
Sometimes there are just no words.... #only.God #choosehope #miracle
May 7, 2016
Sometimes there are just no words.... #only.God #choosehope #miracle
Sunday, May 1, 2016
Heading to a year of Hope!
One year ago today, the shocking, unfathomable, jaw dropping word was uttered. Yes. China said YES. Yes! Yes, I could become the mother to baby Hope. For however long she had to live. To say that day was surreal would be an understatement. Initially I was in disbelief. The odds were so stacked against this happening. How.did.this.happen?!? How was she still alive at 13 months old?!? Only.God. There is no other logical explanation. As the reality began to settle in, my heart leapt with a sweet combination of joy and fear. And franticness, if that is even a word. There was so much I needed to do. I needed to tell my parents. I needed to tell my employer. I needed advice from the palliative care team. I needed to find flights. I needed to get to China. Five days later, I would be on that plane to travel half way around the world to receive a baby so sick that I, along with others, was not sure she would make it out of China alive. All because China said yes on this day one year ago.
So much has happened over the past year that it is staggering. As I look back to photos of Hope's first days as my daughter, it is shocking to me to see just how sick she was at that time. She was so sick. So, so sick. It is no wonder the US consulate issued a same day visa, which almost never happens; and we were asked to leave the plane to come home home three times. Somehow, my eyes were protected from truly seeing the reality. Someone at our beloved pediatrician's office said that I was blinded by love. Protected, in a way, so that I was able to do what needed to be done. I think she is right. He protected my mama's heart in a way that I would be able to face the task at hand. Otherwise, I may have been too scared to proceed.
There have been so many valuable lessons learned over the past year. A year which has been filled with some of the most joy filled moments of my entire life. It has also been filled with some hard moments of struggle. How can moments which take a breath away with such beauty and joy be intermingled with such struggle? Because. Because that is the essence of life and living to the fullest in this beautiful, broken, world. There will be times of sweetness so palpable that the moment is to be savored forever, and there will be times of pain that there is a wish to seek relief of dissipating immediately. Living life in this past year, I have come to believe that joys will always be intermixed with moments of hard. The hard does not dismiss the joy, nor does the joy negate the hard. There is just coexistence. My task, I think, is to continue to just be in it, learn what I need to learn from it, and focus on what I should be focusing on.
I have so many choices, I am learning. Choices to see the mercies, knowing they are always there. Choices to be in the present. Choices to find joy. Choices to laugh. Choices to cherish memories and understand that all seasons will come to an end. Choices to be grateful. Choices to forgive and ask for forgiveness. Choices to listen. Choices to reach out of the comfort zone. Choices to see goodness. Choices to ask for and accept help. Choices to take risks. Choices to always put people over things. Choices to recognize that this life is but a blink, and every moment counts. Choices to say yes to "impossible" ideas for kingdom building. Choices to offer help. Choices to try to make the world a little better than it was found. Choices to live life to the fullest. Choices to see the people in life as the greatest gifts. Choices to choose Hope.
So many times it has been said that my response to China's yes a year ago has saved Hope's life. While I don't discount that God performed a major miracle for Hope, one where I was gifted the role of her mother, the reality is, that response has also saved mine. I have learned and continue to learn so much. My faith has deepened and strengthened beyond measure. I am changed and know He will continue to work in and through me. What a year. I wouldn't trade it for the world.
So much has happened over the past year that it is staggering. As I look back to photos of Hope's first days as my daughter, it is shocking to me to see just how sick she was at that time. She was so sick. So, so sick. It is no wonder the US consulate issued a same day visa, which almost never happens; and we were asked to leave the plane to come home home three times. Somehow, my eyes were protected from truly seeing the reality. Someone at our beloved pediatrician's office said that I was blinded by love. Protected, in a way, so that I was able to do what needed to be done. I think she is right. He protected my mama's heart in a way that I would be able to face the task at hand. Otherwise, I may have been too scared to proceed.
There have been so many valuable lessons learned over the past year. A year which has been filled with some of the most joy filled moments of my entire life. It has also been filled with some hard moments of struggle. How can moments which take a breath away with such beauty and joy be intermingled with such struggle? Because. Because that is the essence of life and living to the fullest in this beautiful, broken, world. There will be times of sweetness so palpable that the moment is to be savored forever, and there will be times of pain that there is a wish to seek relief of dissipating immediately. Living life in this past year, I have come to believe that joys will always be intermixed with moments of hard. The hard does not dismiss the joy, nor does the joy negate the hard. There is just coexistence. My task, I think, is to continue to just be in it, learn what I need to learn from it, and focus on what I should be focusing on.
I have so many choices, I am learning. Choices to see the mercies, knowing they are always there. Choices to be in the present. Choices to find joy. Choices to laugh. Choices to cherish memories and understand that all seasons will come to an end. Choices to be grateful. Choices to forgive and ask for forgiveness. Choices to listen. Choices to reach out of the comfort zone. Choices to see goodness. Choices to ask for and accept help. Choices to take risks. Choices to always put people over things. Choices to recognize that this life is but a blink, and every moment counts. Choices to say yes to "impossible" ideas for kingdom building. Choices to offer help. Choices to try to make the world a little better than it was found. Choices to live life to the fullest. Choices to see the people in life as the greatest gifts. Choices to choose Hope.
So many times it has been said that my response to China's yes a year ago has saved Hope's life. While I don't discount that God performed a major miracle for Hope, one where I was gifted the role of her mother, the reality is, that response has also saved mine. I have learned and continue to learn so much. My faith has deepened and strengthened beyond measure. I am changed and know He will continue to work in and through me. What a year. I wouldn't trade it for the world.
Saturday, April 9, 2016
The joy stealer
Worry is a joy stealer. I know this, because I have been living this for the past few weeks. As baby Hope's liver function tests have been trending upwards into abnormal range again, naturally, I began to worry. Endlessly. I began to question why. I began to wonder what was going on inside of her tiny, growing, and perfectly imperfect body. The fear has bordered on consuming. Actually, it has become consuming.
Hope is still on steroids and has been since the rejection beast was diagnosed back in January. Our team uses a long term taper after high dose steroids to gradually wean away in hopes of keeping the rejection at bay. Her prograf dose (antirejection medication) is increased to a high level in order to give more assurance of taming the beast. All seemed to be progressing nicely. Her labs were normal. We decided to plan a much needed road trip to our favorite place on the planet, to decompress and relax as a family after a long year. Our team gave us their blessing to go, as long as things remained stable...
Hope had a liver biopsy last week to further confirm that she is in rejection again. Her team was feeling confident that rejection is what we were looking at given her abnormal liver tests. They explained we would do another high dose steroids by IV in the hospital, and add a second medication to help fight along with the prograf, since Hope cannot continue to remain on steroids long term. Steroids are too dangerous. The team hoped we could do the steroids, add a second daily medication, and then be on our way for our road trip. Only now, she has been anemic. Her blood clot time is slightly elevated. And her Epstein Barr viral load (EBV) is not decreasing. Instead of getting a call for hospital admission the day following biopsy, our team called to say the results were still pending. Yesterday, they explained that yes, she does have mild rejection again, but they are also concerned that she has Epstein Barr hepatitis along with it. And the biopsy results for the hepatitis would not be ready until last night. This time, it is not a case of if she has EBV hepatitis, but how severe it is. Initially, they decided that a plan would be made today about treatment course. A few hours later, they called with a new plan. Because having both rejection and hepatitis is very complicated and delicate to treat, they decided that rather than have only two of Hope's doctors decide how to proceed they would rather have all of her doctors weigh in. That speaks volumes as the two doctors who would have made the decision include her head surgeon and one of the amazing liver doctors on our team.
Having both EBV hepatitis and rejection is a difficult place to be in. Treating EBV hepatitis includes lowering her dose of Prograf, giving antiviral, and IV immune boosters. Treating rejection includes further suppression of her immune system. These are completely opposite, incompatible treatment plans. Hope's team will decide which is more pressing to treat. By treating rejection, her EBV could ravage her body causing the dreaded PTLD (post transplant lymphoproliferative disorder which includes lymphoma). By treating EBV, her rejection could worsen and she could lose the very organ which has saved her life. It has become easy to fall into the slippery slope of constant worry.
Last night, as my BFF and I texted at 2:00 am, I realized that the worry was stealing my joy. Because I am allowing it to. The choice is mine. The reality is that there is no control over viruses which get into little bodies and replicate. There is nothing I can do to change the fact that Hope has these two battles going on inside her beautiful hero liver. Channeling my energy into something I cannot control is futile, and will suck me dry. My task, I think, is to put the worry aside. I know this is not easy. I am not a superhero or a saint. I am just an ordinary girl serving an extraordinary God. A God who continues to shower me with mercies and is patient with me as I learn and fail. So I will choose to try to put the worry aside. It is a choice I can make and put effort into. Instead of keeping my focus on the worry, I can keep my focus on the gift of today. The joy in today. The hope in today. And whether the time is short or long, I will treasure each and every moment I get with my sweet baby girl.
Hope is still on steroids and has been since the rejection beast was diagnosed back in January. Our team uses a long term taper after high dose steroids to gradually wean away in hopes of keeping the rejection at bay. Her prograf dose (antirejection medication) is increased to a high level in order to give more assurance of taming the beast. All seemed to be progressing nicely. Her labs were normal. We decided to plan a much needed road trip to our favorite place on the planet, to decompress and relax as a family after a long year. Our team gave us their blessing to go, as long as things remained stable...
Hope had a liver biopsy last week to further confirm that she is in rejection again. Her team was feeling confident that rejection is what we were looking at given her abnormal liver tests. They explained we would do another high dose steroids by IV in the hospital, and add a second medication to help fight along with the prograf, since Hope cannot continue to remain on steroids long term. Steroids are too dangerous. The team hoped we could do the steroids, add a second daily medication, and then be on our way for our road trip. Only now, she has been anemic. Her blood clot time is slightly elevated. And her Epstein Barr viral load (EBV) is not decreasing. Instead of getting a call for hospital admission the day following biopsy, our team called to say the results were still pending. Yesterday, they explained that yes, she does have mild rejection again, but they are also concerned that she has Epstein Barr hepatitis along with it. And the biopsy results for the hepatitis would not be ready until last night. This time, it is not a case of if she has EBV hepatitis, but how severe it is. Initially, they decided that a plan would be made today about treatment course. A few hours later, they called with a new plan. Because having both rejection and hepatitis is very complicated and delicate to treat, they decided that rather than have only two of Hope's doctors decide how to proceed they would rather have all of her doctors weigh in. That speaks volumes as the two doctors who would have made the decision include her head surgeon and one of the amazing liver doctors on our team.
Having both EBV hepatitis and rejection is a difficult place to be in. Treating EBV hepatitis includes lowering her dose of Prograf, giving antiviral, and IV immune boosters. Treating rejection includes further suppression of her immune system. These are completely opposite, incompatible treatment plans. Hope's team will decide which is more pressing to treat. By treating rejection, her EBV could ravage her body causing the dreaded PTLD (post transplant lymphoproliferative disorder which includes lymphoma). By treating EBV, her rejection could worsen and she could lose the very organ which has saved her life. It has become easy to fall into the slippery slope of constant worry.
Last night, as my BFF and I texted at 2:00 am, I realized that the worry was stealing my joy. Because I am allowing it to. The choice is mine. The reality is that there is no control over viruses which get into little bodies and replicate. There is nothing I can do to change the fact that Hope has these two battles going on inside her beautiful hero liver. Channeling my energy into something I cannot control is futile, and will suck me dry. My task, I think, is to put the worry aside. I know this is not easy. I am not a superhero or a saint. I am just an ordinary girl serving an extraordinary God. A God who continues to shower me with mercies and is patient with me as I learn and fail. So I will choose to try to put the worry aside. It is a choice I can make and put effort into. Instead of keeping my focus on the worry, I can keep my focus on the gift of today. The joy in today. The hope in today. And whether the time is short or long, I will treasure each and every moment I get with my sweet baby girl.
Wednesday, March 9, 2016
Two years ago....
Two years ago a precious baby girl entered the world.
She would go on to defy all odds.
She would go on to collect the hearts of those who know her.
She would go on to show that love is worth the risk.
How I hope and pray that her first mother knows her baby daughter is alive.
That there was hope.
That she will always be cherished forever.
And that her baby girl has changed the world for the better.
She would go on to defy all odds.
She would go on to collect the hearts of those who know her.
She would go on to show that love is worth the risk.
How I hope and pray that her first mother knows her baby daughter is alive.
That there was hope.
That she will always be cherished forever.
And that her baby girl has changed the world for the better.
Sunday, February 28, 2016
Knowing Hope Inc
When I was a 20 something year old, my second job as a pediatric OT was working in my state's early intervention system. I would work there for a year, then went back for another consecutive 17 years after a year hiatus to experience life down south. Working there brought many incredibly meaningful relationships, including one which would impact my life forever. It was there that I met someone who would become one of my BFF's. My trusted and constant friend. My soul sister.
Over the years I would discover my friend and I shared the same heart for orphans. She began traveling to Russia, Siberia, and then China to volunteer in orphanages. I traveled back to China to volunteer in orphanages. Our skills as pediatric therapist and special educator were in desperate need. Orphanages around the world were full of children with medical and special needs. The caregivers needed partners to know how to best care for these children. Through our conversations and shared experiences, the idea for Knowing Hope Inc. was born. We envisioned continued outreach to orphanages through teaching and training. We would empower those "on the ground" with the skills they needed. As I continued to volunteer in China, the thirst for this knowledge grew and grew. We were asked if our teachings were government sponsored. We were were asked when we would be coming back. Invitations grew. The conference rooms were overfull. People were turned away as we needed larger space. And the word began to leak out into the community where parents, raising their children with medical and special needs, would attend. Hope was needed, and it was clear that somehow, through us, it was being given. It was given by partnering alongside with those who do the real work. The need was shown and clear. Trust had been built in an area where trust is rarely given. More needed to be done.
The purpose of Knowing Hope Inc is threefold: to provide education and training to those caring for children with medical and special needs; to provide palliative care/hospice services to the sickest of children; and to enable impoverished families to receive the support they need to obtain necessary medical care in order for children to remain in families. These purposes will allow us to serve our mission, which is to live to make a difference in the lives of orphaned and impoverished children by showing transformative compassion and care.
This past year has been a huge year of change, but one thing that has not changed was the desire to continue work that has been started. A year ago, Knowing Hope Inc was incorporated in the state of Massachusetts. This week, Knowing Hope Inc has been recognized as a 501(c)(3) by the IRS. Knowing Hope is officially a non profit. Dear, dear friends who have journeyed to China with us several times and led a team to China last year worked tirelessly on bylaws. We are now working fervently to get the logistics done such as get our website up and running, and are humbled by those who are asking how help can be given.
As I think back to all that has happened over the past 20 years, I am in awe of how it has all been unfolding. Our God has been in every single detail, each step of the way. He knew my soul sister and I, along with our dear friends, would make this happen. It is amazing to think of how each experience has been woven together to bring forth this very moment.
There is much to be done. Human lives are at stake. Life is way too short and in a blink time is gone. Live to make a difference. Little ones are counting on it.
Knowing Hope Inc
PO Box 72
Andover, MA 01810
Over the years I would discover my friend and I shared the same heart for orphans. She began traveling to Russia, Siberia, and then China to volunteer in orphanages. I traveled back to China to volunteer in orphanages. Our skills as pediatric therapist and special educator were in desperate need. Orphanages around the world were full of children with medical and special needs. The caregivers needed partners to know how to best care for these children. Through our conversations and shared experiences, the idea for Knowing Hope Inc. was born. We envisioned continued outreach to orphanages through teaching and training. We would empower those "on the ground" with the skills they needed. As I continued to volunteer in China, the thirst for this knowledge grew and grew. We were asked if our teachings were government sponsored. We were were asked when we would be coming back. Invitations grew. The conference rooms were overfull. People were turned away as we needed larger space. And the word began to leak out into the community where parents, raising their children with medical and special needs, would attend. Hope was needed, and it was clear that somehow, through us, it was being given. It was given by partnering alongside with those who do the real work. The need was shown and clear. Trust had been built in an area where trust is rarely given. More needed to be done.
The purpose of Knowing Hope Inc is threefold: to provide education and training to those caring for children with medical and special needs; to provide palliative care/hospice services to the sickest of children; and to enable impoverished families to receive the support they need to obtain necessary medical care in order for children to remain in families. These purposes will allow us to serve our mission, which is to live to make a difference in the lives of orphaned and impoverished children by showing transformative compassion and care.
This past year has been a huge year of change, but one thing that has not changed was the desire to continue work that has been started. A year ago, Knowing Hope Inc was incorporated in the state of Massachusetts. This week, Knowing Hope Inc has been recognized as a 501(c)(3) by the IRS. Knowing Hope is officially a non profit. Dear, dear friends who have journeyed to China with us several times and led a team to China last year worked tirelessly on bylaws. We are now working fervently to get the logistics done such as get our website up and running, and are humbled by those who are asking how help can be given.
As I think back to all that has happened over the past 20 years, I am in awe of how it has all been unfolding. Our God has been in every single detail, each step of the way. He knew my soul sister and I, along with our dear friends, would make this happen. It is amazing to think of how each experience has been woven together to bring forth this very moment.
There is much to be done. Human lives are at stake. Life is way too short and in a blink time is gone. Live to make a difference. Little ones are counting on it.
Knowing Hope Inc
PO Box 72
Andover, MA 01810
Wednesday, February 3, 2016
For 28 Days of Hearts...CHD awareness month
It is better to be beautiful on the inside than it is on the outside. That was the theme of a fable my 11 year old chose to write for a recent school assignment. Oh, how I love her heart. Her beautiful, gorgeous heart.
Lianna is known by many to be wise beyond her age. She is my sensitive one. Her heart feels things strongly and she speaks from it. She always has. When Lianna was born in China in 2004, we were told she was very, very sick. She entered the orphanage being the size of a kitten. She had fresh IV marks indicating that her biological family loved her very much and sought treatment for their ailing daughter. Health care in the rural village area of China where she was born is rough. It is unclear if a congenital heart defect would even have been detected. Clearly she was sick and unable to keep fluid down. She was not growing. She was teeny tiny. And she could hardly open her beautiful brown eyes.
By the time we met her, she was 14 months old and had defied the odds of remaining alive as an orphan with an untreated Congenital Heart Condition (CHD). Specifically, a ventricular septal defect (VSD), patent foramen ovale (PFO), and aortic spectum (something her US doctors have yet to determine the meaning of). She was incredibly weak. She was unable to sit up by herself. Her head was sweaty. She gazed deeply at my first daughter and I as we played in the same baby room my eldest daughter had spent the first 9 months of her life in. One of the nannies plopped her into my lap and my daughter stroked her head. We were told she was waiting for surgery. We were told that they hoped she would have that surgery soon. I had no idea that the very first orphanage volunteer experience would introduce me to the orphan who would become my second daughter.
Two months after my eldest daughter and I spent a day loving on the orphans in her former orphanage, we learned that the baby with the big brown eyes, the baby who sat in my lap and seemed to beg me not to move her, the baby with the CHD who was frail and weak and sick, had had a successful heart surgery. She would be placed for adoption. Would I want to pursue adopting her? The paperwork race began and I took the leap of faith. The net appeared, just as the wise adoption coordinator said it would. She would come home shortly after turning 2, almost a year to the day when I first met her.
Before adopting my beautiful girl, heart disease had always scared me. Maybe, it's because my own heart was broken. Not in the literal sense, but because I failed to see the beauty of living in the here and now. I had clung to the future, and wanted those future plans to come true. I wanted guarantees of a long life. I had always thought I wanted close to "perfection", erroneously thinking that it would ensure the guarantee. I wanted something that is not guaranteed to any of us, whether born with congenital heart disease or not. The doctors at Boston Children's Hospital have said that Lianna's heart surgery was done exceptionally well. "It was as if it was done here", I was told. Currently she is monitored for a mitral valve regurgitation, which has been stable for several years. Heart disease is not as scary anymore. We are living our lives and she continues to teach me lessons I need to learn.
My heart girl reminds me to live in the present while looking with the heart, because her heart is that beautiful. She looks with her gorgeous heart each and every day. She finds the beauty in all people, young and old, strong or weak, special need or not, homeless or homeowner. She seems to see that true beauty that is found in all imperfect people. A true beauty that is only found on the inside. And she radiates that same beauty for all the world to see. How lucky am I to be her mother.
Lianna is known by many to be wise beyond her age. She is my sensitive one. Her heart feels things strongly and she speaks from it. She always has. When Lianna was born in China in 2004, we were told she was very, very sick. She entered the orphanage being the size of a kitten. She had fresh IV marks indicating that her biological family loved her very much and sought treatment for their ailing daughter. Health care in the rural village area of China where she was born is rough. It is unclear if a congenital heart defect would even have been detected. Clearly she was sick and unable to keep fluid down. She was not growing. She was teeny tiny. And she could hardly open her beautiful brown eyes.
By the time we met her, she was 14 months old and had defied the odds of remaining alive as an orphan with an untreated Congenital Heart Condition (CHD). Specifically, a ventricular septal defect (VSD), patent foramen ovale (PFO), and aortic spectum (something her US doctors have yet to determine the meaning of). She was incredibly weak. She was unable to sit up by herself. Her head was sweaty. She gazed deeply at my first daughter and I as we played in the same baby room my eldest daughter had spent the first 9 months of her life in. One of the nannies plopped her into my lap and my daughter stroked her head. We were told she was waiting for surgery. We were told that they hoped she would have that surgery soon. I had no idea that the very first orphanage volunteer experience would introduce me to the orphan who would become my second daughter.
Two months after my eldest daughter and I spent a day loving on the orphans in her former orphanage, we learned that the baby with the big brown eyes, the baby who sat in my lap and seemed to beg me not to move her, the baby with the CHD who was frail and weak and sick, had had a successful heart surgery. She would be placed for adoption. Would I want to pursue adopting her? The paperwork race began and I took the leap of faith. The net appeared, just as the wise adoption coordinator said it would. She would come home shortly after turning 2, almost a year to the day when I first met her.
Before adopting my beautiful girl, heart disease had always scared me. Maybe, it's because my own heart was broken. Not in the literal sense, but because I failed to see the beauty of living in the here and now. I had clung to the future, and wanted those future plans to come true. I wanted guarantees of a long life. I had always thought I wanted close to "perfection", erroneously thinking that it would ensure the guarantee. I wanted something that is not guaranteed to any of us, whether born with congenital heart disease or not. The doctors at Boston Children's Hospital have said that Lianna's heart surgery was done exceptionally well. "It was as if it was done here", I was told. Currently she is monitored for a mitral valve regurgitation, which has been stable for several years. Heart disease is not as scary anymore. We are living our lives and she continues to teach me lessons I need to learn.
My heart girl reminds me to live in the present while looking with the heart, because her heart is that beautiful. She looks with her gorgeous heart each and every day. She finds the beauty in all people, young and old, strong or weak, special need or not, homeless or homeowner. She seems to see that true beauty that is found in all imperfect people. A true beauty that is only found on the inside. And she radiates that same beauty for all the world to see. How lucky am I to be her mother.
Monday, January 18, 2016
Anchor of Hope
Waiting.
Waiting is so hard. Overall, I tend to be a pretty patient person. However, there are times when that myth of myself is shattered. The adoption of each of my daughters entailed so much wait. It.was.agonizing. And now, I seem to be in a period of waiting again. There is so much waiting. Waiting for lab results. Waiting for team thoughts on those results. Waiting for congestion to clear enough so biopsy can happen.
Then, there will be waiting for biopsy results. Waiting for treatment plan. Waiting for immunosuppresion to lessen so we can "re-enter living". Waiting for the dark times and struggle to end. Waiting for the exhaustion to fade. Waiting for..... Waiting for night. Waiting for morning. Always, always waiting. And I realize, I am falling into the trap. Falling deep into the trap of believing that somehow meaningful life exists on the other side of the waiting. It's the trap that prevents me from living fully in the moment. It prevents me from living fully in the waiting. Because waiting is HARD. And waiting in hard times is even harder. It requires discipline. It requires letting go of the worry and desire to control the outcomes. It requires trust in God that the plan for my life is unfolding as it is meant to be. It requires faith that regardless of the biopsy results He will give mercies. It requires the realization that I am missing out on the mercies of the moment if I am constantly consumed by what is to come.
Hope's liver labs are the lowest they have been in the past 5 weeks. The plan for her has changed several times over the past week. Her team will see what tomorrow's labs show, and plan again accordingly. Parenting Hope is teaching me to be patient while simultaneously remove my focus from the next thing to come. She is teaching me to live in the constant waiting. She is teaching me to focus and just live. She teaching me there are too many uncertainties to place plans, hopes, or dreams on tomorrow. Those uncertainties can unravel me. So instead, she is teaching me that in the here and now is an anchor. The anchor of God will hold me steady if I let Him. He will hold me in the right now of today. I can choose. I can choose to become caught up in the possibilities of tomorrow, or I can choose to see the now in this very moment.
I have so much to learn. So, so, much. Life is whirling by so quickly. If I don't stop and breathe in the moment, I will miss it. I will miss the smallness of the hands which clutch onto mine. I will miss the gentle curves of their faces. I will miss the questions. I will miss the laughter. I will miss the tears. I will miss that they want my attention now. I will miss seeing how light comes from darkness. I will miss the mercies. I will miss being a part of the now that my girls are part of. I will miss it all. And I will miss the anchor which is oh so patient with me as I learn and holds me steady through it all.
Waiting is so hard. Overall, I tend to be a pretty patient person. However, there are times when that myth of myself is shattered. The adoption of each of my daughters entailed so much wait. It.was.agonizing. And now, I seem to be in a period of waiting again. There is so much waiting. Waiting for lab results. Waiting for team thoughts on those results. Waiting for congestion to clear enough so biopsy can happen.
Then, there will be waiting for biopsy results. Waiting for treatment plan. Waiting for immunosuppresion to lessen so we can "re-enter living". Waiting for the dark times and struggle to end. Waiting for the exhaustion to fade. Waiting for..... Waiting for night. Waiting for morning. Always, always waiting. And I realize, I am falling into the trap. Falling deep into the trap of believing that somehow meaningful life exists on the other side of the waiting. It's the trap that prevents me from living fully in the moment. It prevents me from living fully in the waiting. Because waiting is HARD. And waiting in hard times is even harder. It requires discipline. It requires letting go of the worry and desire to control the outcomes. It requires trust in God that the plan for my life is unfolding as it is meant to be. It requires faith that regardless of the biopsy results He will give mercies. It requires the realization that I am missing out on the mercies of the moment if I am constantly consumed by what is to come.
Hope's liver labs are the lowest they have been in the past 5 weeks. The plan for her has changed several times over the past week. Her team will see what tomorrow's labs show, and plan again accordingly. Parenting Hope is teaching me to be patient while simultaneously remove my focus from the next thing to come. She is teaching me to live in the constant waiting. She is teaching me to focus and just live. She teaching me there are too many uncertainties to place plans, hopes, or dreams on tomorrow. Those uncertainties can unravel me. So instead, she is teaching me that in the here and now is an anchor. The anchor of God will hold me steady if I let Him. He will hold me in the right now of today. I can choose. I can choose to become caught up in the possibilities of tomorrow, or I can choose to see the now in this very moment.
I have so much to learn. So, so, much. Life is whirling by so quickly. If I don't stop and breathe in the moment, I will miss it. I will miss the smallness of the hands which clutch onto mine. I will miss the gentle curves of their faces. I will miss the questions. I will miss the laughter. I will miss the tears. I will miss that they want my attention now. I will miss seeing how light comes from darkness. I will miss the mercies. I will miss being a part of the now that my girls are part of. I will miss it all. And I will miss the anchor which is oh so patient with me as I learn and holds me steady through it all.
Friday, January 8, 2016
Hope and the beast
The.Beast.
That is what rejection was referred to yesterday by a friend of mine as we chatted about life, and I shared my fears about the cause of Hope's recent rising liver values.
The beast.
Last night I learned that Hope's team is also sharing the same concerns about her rising liver values. As soon as I heard our NP's voice, her concern and disappointment was palpable. The values were high. Again. A biopsy of her liver will be scheduled. Because rejection is serious. Serious enough that when her numbers came back high on Tuesday they wanted her back for labs again on Thursday. Serious enough that our NP said they hope to have the biopsy scheduled later today for next Tuesday.
Hope's little body is doing what it has been designed to do. It recognizes something as foreign, and begins a fight against it. Now there is a battle being waged. She has had three different medications to help prevent the rejection beast. She takes her tacrolimus/prograf twice daily without fail. She loves this medication, and loses absolutely none. This week, her labs showed her tacrolimus level was high. Her liver numbers should be lower. Not rising. And so, the process was explained to me by our NP. Biopsy to confirm rejection. Admit to the hospital for high dose IV steroids to hopefully stop the rejection. Discharge home with oral steroids. All while continuing the twice a day tacrolimus. Her immune system will be depleted. Again. We will be under strict precautions for isolation. Again. And to top it all off there was a study published yesterday in the Journal of the American Medical Association discussing the increased incidence of cancer deaths among patients (especially pediatric patients) with solid organ transplants, likely impacted due to immune suppression.
Needless to say, this news was not what I wanted to hear. As I drove home from transfusion day with Hope snuggled happily in her car seat and her two older sisters now looking pink sitting behind her, I wanted to get away. I wanted to sit with my daughters on a warm beach, feeling the soft sand and listening to their giggles as they splashed around in water. Without a care in the world. THAT is where I wanted to be. Not prepping for yet another anesthesia procedure and inpatient stay. Not preparing for the horrible personality changes, albeit temporary, that occurs with a child on steroids. I wanted my happy place. This was just too hard to face the reality that my baby girl is going through. She has already been through the unimaginable in her short 21 months of life. Rejection impacts about 20% of all liver transplant recipients. Of that 20%, there are 5% for whom the IV steroids will not work. The BEAST.
And this morning I woke up with the weight of all of this. And, as I drank my morning tea and did some reading I realized I completely forgot. I just forgot. I forgot about the mercies.
My morning devotional reading was about the story of Moses. Moses is obedient to God's plan, and goes to Egypt to deliver the Israelites. When things get harder instead of easier, Moses begins to question God. The line "If I just follow God's plan, everything should go smoothly, right", struck me. In no way was this ever promised. Being obedient to God and following His plan does not bring easy. That was never part of the deal. As I continued to read, I was reminded to draw close to God in confidence, so I could find MERCY and favor. There it was. My reminder. To look for the mercies.
I forgot. But I was reminded by a good, good God.
We may be facing the beast, but our God is with us. And He will send mercies. Like our amazing, amazing medical team. The team who clearly love my girl. This was so evident in the NP's voice as she delivered the news of the probable rejection. We have a team who will be with us and they will use their knowledge to do the best they can for Hope. We have the nurses on 10 South. Oh, those nurses. We have experienced some of our hardest days under their care, and they are gifts. The thought of seeing some of our favorites again makes the news of rejection easier to take. We will have the clinical assistants, like T, who always manages to bring a smile to Hope's face. Perhaps it is because he accidentally got some of her ascites fluid in his mouth. Yep, in his mouth, as he was emptying her drain. He never even reacted in other than a laugh. T is a gem. We will get to see him again. Our community is already rallying. Encouragement has been pouring in. And one of the biggest mercies of all is that the probable rejection beast was caught early and my baby girl is alive to fight the beast. She is ALIVE. I now have online friends in the liver world who would likely do anything to have their children still living, even if it means fighting rejection. Hope is here. And we will face this.
That is what rejection was referred to yesterday by a friend of mine as we chatted about life, and I shared my fears about the cause of Hope's recent rising liver values.
The beast.
Last night I learned that Hope's team is also sharing the same concerns about her rising liver values. As soon as I heard our NP's voice, her concern and disappointment was palpable. The values were high. Again. A biopsy of her liver will be scheduled. Because rejection is serious. Serious enough that when her numbers came back high on Tuesday they wanted her back for labs again on Thursday. Serious enough that our NP said they hope to have the biopsy scheduled later today for next Tuesday.
Hope's little body is doing what it has been designed to do. It recognizes something as foreign, and begins a fight against it. Now there is a battle being waged. She has had three different medications to help prevent the rejection beast. She takes her tacrolimus/prograf twice daily without fail. She loves this medication, and loses absolutely none. This week, her labs showed her tacrolimus level was high. Her liver numbers should be lower. Not rising. And so, the process was explained to me by our NP. Biopsy to confirm rejection. Admit to the hospital for high dose IV steroids to hopefully stop the rejection. Discharge home with oral steroids. All while continuing the twice a day tacrolimus. Her immune system will be depleted. Again. We will be under strict precautions for isolation. Again. And to top it all off there was a study published yesterday in the Journal of the American Medical Association discussing the increased incidence of cancer deaths among patients (especially pediatric patients) with solid organ transplants, likely impacted due to immune suppression.
Needless to say, this news was not what I wanted to hear. As I drove home from transfusion day with Hope snuggled happily in her car seat and her two older sisters now looking pink sitting behind her, I wanted to get away. I wanted to sit with my daughters on a warm beach, feeling the soft sand and listening to their giggles as they splashed around in water. Without a care in the world. THAT is where I wanted to be. Not prepping for yet another anesthesia procedure and inpatient stay. Not preparing for the horrible personality changes, albeit temporary, that occurs with a child on steroids. I wanted my happy place. This was just too hard to face the reality that my baby girl is going through. She has already been through the unimaginable in her short 21 months of life. Rejection impacts about 20% of all liver transplant recipients. Of that 20%, there are 5% for whom the IV steroids will not work. The BEAST.
And this morning I woke up with the weight of all of this. And, as I drank my morning tea and did some reading I realized I completely forgot. I just forgot. I forgot about the mercies.
My morning devotional reading was about the story of Moses. Moses is obedient to God's plan, and goes to Egypt to deliver the Israelites. When things get harder instead of easier, Moses begins to question God. The line "If I just follow God's plan, everything should go smoothly, right", struck me. In no way was this ever promised. Being obedient to God and following His plan does not bring easy. That was never part of the deal. As I continued to read, I was reminded to draw close to God in confidence, so I could find MERCY and favor. There it was. My reminder. To look for the mercies.
I forgot. But I was reminded by a good, good God.
We may be facing the beast, but our God is with us. And He will send mercies. Like our amazing, amazing medical team. The team who clearly love my girl. This was so evident in the NP's voice as she delivered the news of the probable rejection. We have a team who will be with us and they will use their knowledge to do the best they can for Hope. We have the nurses on 10 South. Oh, those nurses. We have experienced some of our hardest days under their care, and they are gifts. The thought of seeing some of our favorites again makes the news of rejection easier to take. We will have the clinical assistants, like T, who always manages to bring a smile to Hope's face. Perhaps it is because he accidentally got some of her ascites fluid in his mouth. Yep, in his mouth, as he was emptying her drain. He never even reacted in other than a laugh. T is a gem. We will get to see him again. Our community is already rallying. Encouragement has been pouring in. And one of the biggest mercies of all is that the probable rejection beast was caught early and my baby girl is alive to fight the beast. She is ALIVE. I now have online friends in the liver world who would likely do anything to have their children still living, even if it means fighting rejection. Hope is here. And we will face this.
Wednesday, January 6, 2016
Walking toward Hope
Eight months ago I would be boarding that plane to bring Hope home. I am not sure the english dictionary has the correct vocabulary word to express the fear I had. I had absolutely no doubt that getting on that plane was what I was meant to do. And I would do it, no matter how panicked I was. But the words in my head would have arguments with each other. Literally. "What are you doing" would be met with "doing exactly what you are supposed to do". Back and forth. Over and over. I think it was the unknowns and self doubt that caused the most fear. Which led to more conversations in my mind "sure you are meant to do it, but can you handle it?" "you know, this is going to be ridiculously hard", and "what happens if....". Again, over and over. I suppose in many ways the fear could be easily paralyzing. The fear could create a roadblock to doing what I knew I was being called to do. Some may even have said that walking away could be justified. Maybe it would just be "too hard".
So I did it afraid. That night eight months ago, as we headed to the airport, we were given a ride by a dear friend of mine who made me laugh. She is naturally just a fun person. Easy to talk to. And she could tell the best stories. As I listened to her and we caught up, I laughed and laughed. For moments at a time, I would forget how afraid I was. Talk about a mercy. Such.a.mercy. By the time we got into the airport and through security to our gate those feelings of fear crept up again in full force. This was it. There would be no looking back. We were going to China, where we would receive Hope. I think it was there, at that gate, that I realized that there would also be no looking forward. No looking back and no looking forward. Only looking at the hear and now. Only looking at the present. And for moments, peace began to ensue. Just as it did during that car ride to the airport when I was fully present and living in the moment.
Hope truly lives in the moment. She has a zest for life that is just palpable. She is such a happy baby. So content. Despite all that she has been through and endured, she loves living. She is my hero. Hope reminds me every day to try to bask in the moment and allow it to remain untainted by the "what ifs" of tomorrow.
Six weeks ago she lay in an OR receiving her gift of life. Today, she lives. Today, I live. Today, we live.
Choose Hope.
So I did it afraid. That night eight months ago, as we headed to the airport, we were given a ride by a dear friend of mine who made me laugh. She is naturally just a fun person. Easy to talk to. And she could tell the best stories. As I listened to her and we caught up, I laughed and laughed. For moments at a time, I would forget how afraid I was. Talk about a mercy. Such.a.mercy. By the time we got into the airport and through security to our gate those feelings of fear crept up again in full force. This was it. There would be no looking back. We were going to China, where we would receive Hope. I think it was there, at that gate, that I realized that there would also be no looking forward. No looking back and no looking forward. Only looking at the hear and now. Only looking at the present. And for moments, peace began to ensue. Just as it did during that car ride to the airport when I was fully present and living in the moment.
Hope truly lives in the moment. She has a zest for life that is just palpable. She is such a happy baby. So content. Despite all that she has been through and endured, she loves living. She is my hero. Hope reminds me every day to try to bask in the moment and allow it to remain untainted by the "what ifs" of tomorrow.
Six weeks ago she lay in an OR receiving her gift of life. Today, she lives. Today, I live. Today, we live.
Choose Hope.
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