Have Ya Heard?

Inspiring, Uplifting and Informative INNERviews

The Stuff That Doctors Don’t Tell You

Colleen Morrill

INNERview with Colleen Morrill

YVONNE PIERRE:  Colleen, you released a moving video on YouTube called Green Beans! Life Lessons from Landon on September 12, 2013.  Can you please introduce yourself and, for those who haven’t this video, share what it’s about?

COLLEEN MORRILL:  My name is Colleen Morrill and I’m the proud mom of Landon.  Green Beans! Life Lessons from Landon is about our family and friends’ experiences with having a child with Down syndrome.  We wanted to share the stuff doctors don’t tell you.  When we were told that Landon had Down syndrome, we were given a long list of things that are going to be wrong with him. We wanted to share what was right with Landon and others with Down syndrome.

YVONNE:  What inspired you to share Landon’s story?

COLLEEN:  Genetic screening.  Talk about a travesty of human rights.   It boggles my mind [that] in the land of the free, we are able to determine a human being’s right to live based upon another’s opinion of “normal”.  What in the world did people with Down syndrome do to deserve a death sentence?  How this is allowed to continue is beyond all comprehension.

Human rights violations are happening all over the world.  In other countries, infants with Down syndrome are abandoned and placed in orphanages where they rarely live past the age of 8 years old.  I wanted to show people what a joy Landon was and even though I lost Landon, I wanted people to know that he was loved and valued every second he was here.

YVONNE:  What do you want people to walk away with after watching?

COLLEEN:  I want people to NOT be afraid of Down syndrome.  I want people to NOT feel ashamed if they have a child with Down syndrome.  I can only speak from my personal experience. I remember, like it was yesterday, the Dr. telling me they thought Landon had a chromosomal anomaly.  I knew in that instant my life had changed forever.   I was so afraid!  I thought, “What is wrong with me?  Why couldn’t I produce a ‘good’ baby? “Oh, I loved him, but the shame of something being wrong with me and the fear of the unknown was so great.  If only I had could go back in time and get my joy back.  Turns out I didn’t produce a “good baby,” I produced an AWESOME baby!   Yes, I know I lost my son to leukemia, but there are a lot parents that have lost their children to accidents and illness that didn’t have Down syndrome.   Good health is not a guarantee for any of us. 

YVONNE:   Colleen, I believe all parents’ greatest fear is the passing of their child.  If you’d like, could you share with us what happened and how found the strength to keep going? 

COLLEEN:  Landon was born with a form of Leukemia, transient myeloproliferative disorder (TMD), which his body fought off.  During this time, he was monitored through regular blood tests, maybe once every couple months, at Children’s National Medical Center.    His first year of life was magnificent! He was such a cutie pie.  He was reaching all of his milestones.  He rolled over early, he was crawling and walking by the time he was 10 months.  Stealing hearts was what he was really good at.   After his first birthday his platelets started to drop slowly.  During this time, he was thriving. He did everything toddlers do. Explore, learn and grow!  By the age of two, in April 2006, he was diagnosed with Acute Myeloid Leukemia (AML) after 6 rounds of chemo at Children’s, Landon was in remission.  So when I tell you Landon had leukemia, you automatically think of this sickly kid that just lays around…Ha!  Not Landon…honestly if he did not have a double lumin broviac for chemo you would not know he was sick!  The nurses and doctors would say when they were having a bad day they would come and see Landon and he would cheer them up!

In April of 2007, he relapsed.  We were told Landon would need a bone marrow transplant. We were also told to consider taking Landon home and making him as comfortable as possible for the time he had left.   We took Landon to Johns Hopkins for a second opinion.  Because Landon was healthy other than having leukemia, we were told that Landon had just as good a chance of surviving a bone marrow transplant than any other child.   So in August of 2007, we went forward with the transplant at Hopkins. Landon was now three years old.    The bone marrow transplant worked – for a few months.

In December of 2007, were told the cancer had come back and there was not much else they could do.  The bone marrow transplant was the cure and it worked; the cancer was just stronger than the cure. In January of 2008, Landon turned four.  He was shutting down; he was not making platelets or red blood cells.  My little boy no longer had the energy to play he slept a lot during this time.  There were so many people praying.  I remember laying in the bed with him while he was sleeping and feeling so defeated.  Fearful of losing him and helpless; wanting him to live but not being able to do a darn thing to help him. Trying to hold on to Landon, but knowing he was facing the inevitable. He was dying.     I prayed a prayer of complete surrender.  I thanked God for letting me be Landon’s mother; I told Him it was privilege. And I didn’t understand why I was given such an honor.  I told God that I would not be mad at Him if he took Landon. I know that Landon belonged to Him and He was only letting me borrow Landon.  I asked for Landon not suffer.  Many of the pics in the video are from that time. A professional photographer volunteered to come to our home and take family photos because honestly, we thought that was going to Landon’s last birthday.  He was four years old.   As it turns out we did get a miracle of sorts. They stopped giving Landon the immune suppression medication in hopes the new immune system would kick in and start fighting the cancer.  We took Landon back to the hospital two days later and his counts did not drop, it was a Friday so they gave him platelets just in case he needed them.  Monday back at the hospital, counts still did not drop.  By Friday, he started making red blood cells and soon after started making platelets.   We were told not to get out hopes to high, it would probably only be a speed bump.   Well Landon started to improve.  Landon was doing so well [that] he started pre-k that September!  He was thriving once again.  In 2009, at five, he started kindergarten! Yes, he was delayed, but he was making friends and learning!   One evening we were at the school for a function.  As we were walking in the building a little boy walked over to Landon put his arm over his shoulder and said “Landon, you are my best friend” I started to cry.  I never thought he would live to go to school, let alone hear what I just heard.  I should also add [that] yes, Landon was a sweet loving little boy.  But he also had his moments when he tried to get away with what he could.  There was an instance on the bus when this sweet little lovable bundle of all boy was picking on a little girl!!  Turns out [that] he thought it would be funny if he gave her a hard time.  Oh, he got in trouble alright.   He didn’t think it was funny when I gave that little girl my phone number and told her to call me if it ever happened again.  I think he had a crush on her.

On Mother’s Day 2010, we thought Landon was doing great, now six years old, counts were perfect, blood work was beautiful.   Landon and his sister Gracie were playing and Landon fell.  He used his forearm to break his fall…which is what most people would do.  When he fell, he cried and cried.  Now you have to understand Landon was not a boy that cried at the drop of a hat.  So I knew something was wrong.  To make a long story short, the cancer had mutated and Landon had a tumor on his scapula.  His scapula (the bone that sticks out on your back) was fractured after the tumor had destroyed most of it.   So, he started radiation treatments to what was left of the scapula.  While we were radiating that one spot, unbeknownst to us, those tumors spread throughout his entire body. There was nothing else that could be done.  We had exhausted all treatment options.  It was September, I will never forget it was Labor Day weekend.  We contacted hospice.  During that time we tried to make Landon as comfortable as possible.   We had a party for him and took him to the beach in September.   I think he mostly enjoyed being with us.  Landon passed away October 1, 2010.

I got through this time with lots of prayer and an amazing support system of family, friends and community.  To this day I am amazed at how many people helped our family.

YVONNE:  How have you grown from this journey?

COLLEEN:  Absolutely I have grown.  In the video, I stated the first thing I learned from Landon was, he could not change.  I had to change my heart and my mindset.  I once worried about what other people thought about me having a child with Down syndrome.  I can assure you that that is no longer the case.    Landon gave my life a new perspective.  He took me places I never thought I would go.  I met people I would have never met who are now my friends.   I can’t put my finger on it and it’s hard to explain, but there was never a time when I didn’t think Landon was teaching me.  Some days I would just look at him and think where is this boy taking me today?

YVONNE:  What is the greatest life lesson you’ve learned from Landon?

COLLEEN:   The greatest lesson I have learned is that all life has value. Whether you are here for a few years or 100 years, you matter – your life has value and purpose.    I also learned [that] whatever is going on in your life, be happy where you are, it could be worse. Life can change in an instant.

YVONNE:  What advice would you give to a new parent who just received the news that their unborn baby or newborn has Down syndrome?

COLLEEN:  Don’t be afraid; don’t let the fear of the unknown steal your joy.  Don’t be ashamed.  Your baby is perfect and that baby is going to be perfect for you.  You’ll see.

CLOSING REMARKS

If someone had told me twenty years ago that I would have a son with Down syndrome and he would change the way I look at pretty much everything, I would not have believed it.   Don’t let fear control you.  Give these kids a chance at life.

 

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6 comments on “The Stuff That Doctors Don’t Tell You

  1. Cheri
    October 15, 2013

    Very thoughtful loving words from a Mom who so obviously still loves her son who moved to Heaven. Never met Landon or his family, but followed his story from about a year before he went away. Landon’s story gave me the courage to reach out to some I may not have before, including Jeffrey, a twenty something young man with severe cerebral palsy and reduced intellect. His mom says he is intellectually about 4 years old. She lets him tool around the block in his motorized wheelchair. About the only thing he can do independently. A few of us “along his route” watch out for him. My husband was always less inhibited than I. Now I go out and chat with him too. I see people head into their homes when they see him coming. My husband talks guys stuff and sometimes puts tire shine on Jeff’s wheels. It’s such a joy to see his eyes sparkle and I would have missed the pleasure if I hadn’t followed Landon’s story.

  2. Colleen Morrill
    October 17, 2013

    Cheri, thank you. You must have followed Landon’s story on Caringbridge. What an incredibly sweet story! Thank you for posting this, you made me cry. To know that Landon touched the hearts of others..his legacy lives on.

  3. Leticia Velasquez
    October 23, 2013

    When we started KIDS Keep Infants with Down Syndrome my co founder Eileen Haupt said, “Doctors can tell you what might go wrong with your child, but only a parent can tell you the joy they will bring you”. So I published a book with our stories and 32 more entitled A Special Mother is Born. Next month its coming out in Spanish. Ha Nacido Una Madre Especial.

  4. Theresa C.
    October 30, 2013

    My daughter Sabrina has been friends with Landon’s sister Lindseyfor 20+ years. I have watched this lovely loving family accept Landon with the same abandon parents that have kds without Down Syndrome do. The Down Syndrome actually made him more special and God knew what he was doing when he assign Landon parents that have not only been his true advocate, but the advocate to all children with Down Syndrome. Great job Colleen! Way to make Landon’s journey on this Earth truly count! Theresa

  5. Colleen Morrill
    November 3, 2013

    Leticia, Is that available in English?

  6. Colleen Morrill
    November 13, 2013

    Thank you Theresa! ((hugs))

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