The Covid Coaster

Like most parents I know, never in a million years would I have dreamed that we would live during a pandemic. It never even entered into my mind. Ever. Yet, here we are. Covid-19. And the new school year almost upon us.

As I have weighed the back to school decision closely, looking at data, listening to both MD and public health experts, watching leadership, and talking to friends and medical teams, it is clear that there is no perfect decision. It's a pandemic, with way too many unknowns, impacting people around the globe. There will be ideals which need to be compromised, regardless of which decision I make. Some will say our state is in good shape, and kids should just return to in person full time. Others will say our state numbers have been increasing, and kids should just do remote. Several MD's I know, who have a knowledge base of disease that is much greater than I have, have said their children will not be returning to in person. Other MD's are sending their children back. The result of all of this has been a level of angst that I have not experienced in a long, long time. I have fluctuated between maybe they can/should go back to hybrid in person to no way will I take that risk and jeopardize lives, either the lives of my children or the lives of our teachers. As one of my BFF's has suggested, we are currently riding the Covid coaster. The emotional ups of "maybe this isn't so bad" and the numbers seem better to the downs of thousands are dying daily and "covid testing is required before all hospital procedures" (clearly it is not "not so bad") are easily like the ups and downs of a rollercoaster. Even though it is not possible, I want off of the Covid coaster. 

My children love school. They thrive in school. They love friends and learning. They love their teachers. They love the routine school brings, and the comfort of that routine. I love that they love school and that when we are in that routine, all of our mental health is better. And yet, the remaining 4 children in my home are all medically complex with a variety of diagnoses from congenital heart defects to transfusion dependent thalassemia to immunocompromised post liver transplant. Asthma, allergies, susceptibility to sepsis, and failure to thrive are some other diagnoses. We are at Boston Children's Hospital every three weeks, with lab visits every 10 days between those treatment days. When I asked our transfusion staff what happens to our regularly scheduled blood transfusions if our family is quarantined, I was told that it is very likely we will be asked to wait to come in. My children would not be refused treatment, but rescheduling becomes a bit of a logistical nightmare as a solo parent. Do I really want to take the chance of disrupting what little routine we have left in order to have in person instruction once or twice a week? Will that really improve our mental health? Or will it actually bring more stress and anxiety?

With so many unknowns about the future, one thing that is very clear is that our in person instruction will look nothing like what we have known in the past. Gone are the days of freely playing and interacting, sharing toys and materials, and hugging or holding hands with friends and teachers. There will be no chatting in the lunchroom or saving a seat for a friend. There will be no all school sing alongs or talent shows. As I have said to my children, the whole thing just stinks. Yet, as I have also said to my children, it will not be this way forever. I suppose the reminder is just as much for me as it is for them.

At the end of the day, when all is quiet in my home and my girls are all asleep, I think back to the time when I was flying home with my youngest who was dying of end stage liver failure. I think back to how she fought with every fiber of her being to remain alive. I think back to the terror I felt when I thought of life without her. Parenting her is the closest I have ever come to that threshold between life and death with any of my children, a place that no parent ever wants to be. Parenting her has taught me that life is precious and delicate. Parenting her holds the fear that due to her immunocompromised status, she is always at risk for life threatening complications from ANY virus. We don't live in that fear, and yet, we are wise and vigilant. We follow the advice of our transplant team and get our vaccinations including flu shots. She receives tamiflu when any family member tests positive for flu and we head to the ER with fevers. We avoid all big crowds during flu season, and do not have playdates when someone is sick or has been sick in that household. We have used purell and bleach wipes years before it became the norm. It is just the reality of how we settled in post transplant and go about our lives. 

As I contemplate and agonize over the school decision, I long for the days we had before being on the covid coaster. I realize now how those days were gifts. Gifts we took for granted. Being able to go to school, interact in carefree manners with others, and experience all that being in school has brought in the past is a gift, even with all of it's imperfections. And I realize now, life is still a gift. Even in this covid coaster madness that I desperately want to end. 

Reflecting on where our lives have taken us up to this point and the lessons learned through it, remote learning is where we need to be. For now, not forever. Even with my children remaining at home for the next school year, engaging in remote learning, there will still be so many gifts and opportunities to find incredible mercies given to us.  Including, I hope, the end to the covid coaster. 

The dyslexia lottery

When it comes to dyslexia, my family has won the lottery. Out of my 4 school aged children, 3 are diagnosed with varying degrees of dyslexia. And if my suspicion is accurate, I might just have 4 out of the 5. The odds of that happening to non biological siblings in a family is literally like winning the lottery. The statistics show that close to 15-20% of the population has dyslexia. Right now, my family is at 60%. It could be 80%. Hence, dyslexia lottery.

Over the years I have had to learn a lot about what it means to be a non traditional learner in a traditional learners academic world of children. Bottom line, it inevitably causes a lot of angst for the majority of children. Self esteem literally becomes chipped away. One of my incredibly bright daughters began saying she was stupid in grade 1. Self confidence plummeted. As a 6 year old. The only thing she looked forward to at school was PE.

People with dyslexia have at least average if not above average intelligence. One of my daughters with dyslexia has an IQ in the superior range, far brighter than me, that is for sure. It's this unexpected difficulty with reading and spelling (given that there is average or above average intelligence) that is the hallmark of dyslexia.

Interestingly, in talking to people, many think kids with dyslexia are unable to read at all. That is not the case. All of my daughters were able to read to some degree in their prospective grades when they were diagnosed. Yet, their reading was slow and laborious. Often there were word errors. Sometimes they would guess. Dyslexia researches say kids without dyslexia become able to look at the letters of a word an automatically know what that word is. They don't need to think about it. They can read quickly which enables the brain to focus on the meaning of what is being read. Kids with dyslexia have to think it through and use the rules that they learned to figure out what a word is. Reading then becomes slowed down. Meaning can be lost. Asking schools for timed tested "cold" (never read before) reading results (such as those used by the DIBELS which many school districts give to elementary aged children) can be helpful in discerning if a child is having reading difficulty.

For two of my daughters, early on I knew something wasn't quite right for them. One was very slow to pick up language and for the other there was some difficulty in remembering the right word when speaking. For both, pronunciation was off. There was difficulty learning days of week and months of the year, or the names of classmates. One had difficulty following multistep directions. As they got older and into elementary school, there were difficulties reading and spelling words. For my other daughter (the third to be diagnosed), I was absolutely caught off guard by her diagnosis. She didn't have articulation issues. She could rhyme. Her vocabulary was precocious, so much so that her pediatrician even remarked about it at her 4 year old physical. She sometimes forgot a word (knowing as word finding) or remembering the name of a classmate but it was subtle. Her biggest issue was with learning sight words. Oh, those dreaded sight words. It was this difficulty that should have raised my guard with her in kindergarten as it was part torture to memorize them. Many kids with dyslexia have difficulties with memory for sight words or math facts.

In order to make the best progress possible, children with dyslexia need a explicitly taught scientifically based multi sensory program for reading which basically means a proven program using all of the senses to directly teach the skills necessary for reading. The window for the best outcome is when the child is very young-kindergarten and first grade. Watching, waiting, or hoping for things to improve is not the way to go. By the time kids are in 3rd grade, they are expected to read to learn. In 3rd grade if a child reads slowly, or is not reading at grade level, significant academic challenges arise  which almost always lead to emotional symptoms. Research shows it becomes almost impossible to catch up once there are reading gaps in 3rd grade. Because the treatment for dyslexia is so specific and the window for optimal results is so young (kindergarten and first grade), we as parents need to be asking our teachers and school systems what they are doing to identify kids who are showing signs of reading difficulty. We cannot trust subjective measures (like Fountas and Pinnell A-Z levels) but must look for objective screenings such as DIBELS.

Two of my daughters are incredibly blessed and lucky to go to the Carroll School. Carroll was started 51 years ago and uses a complete researched based scientific framework for teaching children with dyslexia. The premise of Carroll is to "give each child what he or she most needs". This means that the child's ENTIRE academic program is tailored to his or her learning profile. At Carroll, children are not plugged into available programs. Rather, a program is developed directly for the child. For my daughters, this has been nothing short of life changing. My second grader, who as a first grader believed she was stupid, just remarked "I am good at reading" for the first time ever. She has only had a month of school at Carroll. For both girls, being at a place where all of the students have dyslexia has enabled anxiety around school to subside. The gains in confidence they both show is beyond measure. The love of school and learning has been restored. And they are learning to advocate for what they need as learners, a skill that will help them throughout their lives. I cannot even express the gratitude I have for Carroll school for changing the course of my daughters' lives. It is worth every sacrifice we have made in order for their attendance at this exceptional academic facility.

Winning the dyslexia lottery means my daughters have joined the ranks of other incredible minds with dyslexia. People such as Steven Spielberg, Charles Schwab, Henry Ford, Greg Louganis, Thomas Edison, Tommy Hilfiger, Erin Brokovich, George Washington, Nelson Rockefeller, Cher, Billy Bob Thornton, Danny Glover, Jennifer Aniston, Albert Einstein, Walt Disney, Ansel Adams, Leonardo da Vinci, F. Scott Fitzgerald, Agatha Christie, Hans Christian Andersen, and the list goes on and on. Winning the dyslexia lottery does not mean that my goals for each of my girls has changed; goals of knowing God, being kind to others, and contributing in a meaningful way to society. It just means that they might take a non traditional route to get there.

Liver disease awareness month

It is hard to believe that next month will mark 3 years since my eyes met the most beautiful baby. A suffering baby. A dying baby. A baby given "no hope"

It was November 2014. I was already single with 4 kids, two requiring ongoing regular medical care, and had no intention to bring home one more child. God had other plans. Our intention was to go and serve. To use my skills as a pediatric OT to serve the caregivers and children in orphanages. And then I met her. Our eyes locked and her eyes pierced my heart. She was tiny and jaundiced. Her abdomen was hard. She had biliary atresia. And during her transplant surgery it was also determined that she had a choledochal cyst (cyst of the bile ducts).

Biliary atresia is a condition where ducts to drain bile (which is made in the liver and necessary for digestion) become blocked. Bile can no longer drain from the liver and instead starts destroying it. This destruction becomes deadly. There is no cure. A surgical procedure to "re-route" the bile into the intestines can be successful for some patients. This surgical procedure must be done very soon after birth in order to give the best chance for success. And even when done early, most babies will still go on to need a liver transplant in order to survive.

Liver disease is beastly. As the bile becomes stuck in the liver, the liver itself hardens and the abdomen swells in size. Sometimes the spleen also becomes swollen. Fluid can build up in the abdomen. The size of the enlarged organs makes it hard to eat and breathe. The bile build up causes intense internal itching, making it difficult to rest. Because the damaged liver can no longer aid digestion, malnutrition sets in. Muscles become wasted. The body's ability to clot becomes impaired risking bleeding to death. Infection is another threat to a baby's life with both infections of the liver and systemic sepsis. These are all of the realities of end stage liver failure.

The only "treatment" for end stage liver failure, which is the diagnosis that most babies with biliary atresia will end up with, is a liver transplant. It is not a cure. It.is.not.a.cure. One condition is traded for another condition with liver transplant. Sometimes I look at my girl and she just looks so good. And she is doing so remarkably well. She is so much better than when she was obviously gravely ill. Yet, the previous issues are traded for new ones. She will continue to need regular lab work for the rest of her life. She will continue to need twice daily immune suppression medications for the rest of her life. This lowers her ability to fight infections. She will continue to need medications to protect her kidneys and combat her high blood pressure which result from her immunosuppressants. She is at higher risk for food allergies and certain cancers. She could lose her liver to rejection. In some ways, it can be terrifying to think of all of the what if's...

Instead, we choose to focus on today. Today, she is running around with boundless energy, all because of her liver transplant and our hero donor. Today she is talking, all because of our donor. Today, she is making us laugh with her incredible sense of humor, all because of our donor. Today we soak in the joy she brings, all because of our donor.  Today, we bring awareness of her miracle story during liver disease awareness month, all because of a great God who wove our lives together.

In many ways I am so glad I did not know God's plan back in November 2014.  I would have been too afraid to meet her knowing what was in store.  It's a thought that makes me shudder.  Because then, we would have missed this.  We would have missed all of this.  The world would have missed out on the chance to watch her miracle life unfold.  An orphan dying of liver disease given no hope becomes a cherished daughter who, against every odd, lives.  She lives so well, with such zest and joy. We would have missed out on on the greatest gift and lesson of having this little one in our lives: loving each other while living each day in the moment.

Hope wins

Sometimes life takes us where we are not expecting.
Sometimes life takes us on a journey we would have never planned or wanted for ourselves.
Sometimes, we end up right where we need to be, despite the resistance, despite the fear, despite the unknown answers.
Sometimes, somehow, goodness comes from the darkness. Sometimes, somehow, beauty does come from ashes. Sometimes, somehow, we rise above the adversity, we rise above the forces against us, and sometimes, somehow, hope wins.

Today, my mighty Mia started a new chapter in her education. Ever since she started her education, she has been an outlier. She tried. Oh, did she ever try, to learn like the "traditional" kids. The amount of effort she put in has been monumental. She was exposed to many ideas and skills, but never to mastery. The result? A foundation with many holes.

The holes became apparent a few months ago at her 3 year re-evaluation for continued special education services. Something inside me told me to really look at those test scores. Something inside of me told me to really understand those scores. As I began my work to figure out the true meaning of scaled scores, standard scores, and percentile ranks for each test, I stumbled upon the seemingly impossible concept...that instead of progress, there was regress. How.could.this.be? I graphed the scores from three years ago with the ones I just received, and there was no avoiding the truth. As I presented it to our team, their eyes grew wide. Clearly, we needed more information. Clearly, these graphs were not expected. Clearly, this was not the picture they had hoped to present. This was not the picture I had hoped to see either. Now, I see it very clearly. A foundation with so many holes. And yet my girl amazingly stood tall on this foundation with a huge smile on her face. Until that smile started to fade.

The foundation with holes was starting to steal the spirit of my girl.

I could only do what any mother who comes to the realization that this is happening to her child would do. I would seek to stop this. I would seek to stop this because this must stop. I had more meetings. I asked questions of parents facing similar circumstances and learned from those who went before me. I studied the law. I used every ounce of resources I could muster up. I prayed. I prayed a lot. I looked for an open door, and when I found it, I crept slowly towards it, with my girl in tow, worried about where I was going and what was being left behind.

I looked for reassurance that I was doing the right thing. After today, I need no reassurance. I know. As I sat and listened, I learned that my girl's new school started 50 years ago as a civil rights movement. It came out of the need for a place for children who learn differently to have a better educational system. Because children, like my girl who was always an outlier, deserve an appropriate education. Because children, like mighty Mia, deserve to make meaningful progress. And she's entitled to it by law. And now, this same school, is seeking to reach even more underserved populations. Namely, to those who could not afford such an education because lack of financial means. The very real package of financial aid which is allowing my mighty girl to attend.

For the first time ever in her lifetime my girl is not an outlier. She is surrounded by peers who learn like she does. For the first time in her life she is in a place where she learns just like everyone else. For the first time in her life, I have heard the words that she is not disabled, but very abled. She and her peers think in ways that the traditional kids do not think, but they are able. They can go on to attend colleges and universities, including some of the top in the country. The holes of their foundations will be filled in. With solid foundations, the academic trajectory is changed. Life is changed. With a foundation filled in, my girl's spirit will soar.

Logistically, there are still so many unknowns and questions to be answered. How do I be in two places at once? How do I manage the weeks where labs and hospital care must occur when the two children who need it are in schools some 30 miles away from each other? Will mediation or a hearing be necessary? How will all this work out? Will this settle into a routine? And although the answers are unclear, I know the One who holds them. I trust the reassurance that let me know we are right where we need to be. And I know that hope wins. It always does.

Going in Hope

I saw the looks. The raised brows. The jaw drops. Yes, I was returning to China for a mission trip with all 5 kids including my 3 year old immunocompromised child. And I was taking another high school student. So, in total it would be myself and 6 kids under the age of 16. All traveling to China, for nearly three weeks, to walk among the needs. It was not for a sightseeing tour, not that that would be a piece of cake either. It would be a working trip. A service trip. Hence, the reactions.

I have thought about what my reaction and thoughts would be if I were on the outside looking in at me and what I was doing. I suppose the questions would enter my mind. Why? Why travel with all of those kids? Wouldn't it be easier to leave the kids at home? Wouldn't more get accomplished without children present? What would possess someone to do this? Has she finally, once and for all, lost her mind?

For some of these questions, I cannot even give an answer. Well, maybe it's that I cannot give an answer that would satisfy the onlookers. Maybe it's that there is no logical answer as to how I CAN do this. Because it really is something beyond human which enables this type of work by a single mother of 5, along with all 5 kids and a bonus kid in tow. That is for certain. It is purely divine although even among some fellow believers it seems that this answer could continue to be resisted and/or questioned.

But then, then there is the evidence. The coming out of the haze of jet lag and looking at the images of what happened. The proof. Of what is happening when my eyes are not on them. This is so much more than me. It always has been. I do not have the control or the power to do what is being done in the lives of my girls. It's impossible and illogical.

The only answer I can give to the onlookers, and to myself, is that it is God doing this work in and through us. And that I will never have all of the answers as to why. We only say yes. And we go. He is doing all the rest.

Two years of Hope

Two years ago today I raced half way across the world to a dying baby. Two.years. In some ways, I had no idea what I was doing. I knew I had to go. I just said yes, and went. Because I knew, I just knew, she did not deserve to be alone in her suffering. She deserved to be chosen. She deserved to be loved. No matter how many days on this earth she has.

In the two years she has been part of us, she has taught so much. I opened my hand to let go of so much, and my faith deepened in ways unimaginable. No longer could I depend on myself or my own competency. It was no longer enough. I had to rely on God. On His hope. And the #choosehope became our mantra.

She is a gift. She is a gift I wasn't expecting. She is a miracle witnessed by my own eyes, defying all odds and expectations.

So tonight, I listen to her steady breathing as she sleeps. I am reminded of all that we have experienced in the past two years. And I thank God. For all of it. For every single moment of it. Cherished moments.

#choosehope