Stories From the Heart: A Mother’s Day Tribute (link to view)

Here it is – Our family’s television debut!! Eli’s story is the first one (at 1:28). Additional parts of our interview are shown throughout the program (at 31:19, 37:22, & 54:45). The whole show is heartwarming and each story tells why Seattle Children’s is so special. If you have the time, please watch the whole thing. Donations to the hospital are always accepted and greatly appreciated. You can donate here. Our family thanks you!

❤️❤️Watch Stories From the Heart: A Mother’s Day Tribute HERE❤️❤️

Also, busses have been spotted all over Western Washington with Eli’s sweet picture. We saw our first one a few days ago. It. Was. Surreal.

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I can’t say it enough – Thank you! Thank you for your continued support of our family. Thank you for loving our boys. ❤️

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Coming soon to your television screen – Eli!

Happy Spring!

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It’s been a busy month around here. Seattle Children’s has just fallen in love with our boy. They recently contacted me to ask if we’d share our story on an upcoming television special. Yes, television! I hesitated for a second. It’s scary putting ourselves, my family, out there. But if I can help the hospital that has literally saved my child’s life numerous times, I will. Plus, I love telling Eli’s story. We met the producer and interviewer a few weeks ago. We filmed at the hospital and at our house. The whole experience was surreal. We saw a commercial for the program with our son’s picture. I cried with excitement. Eli takes it all in stride.

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The show, “Stories From the Heart: A Mother’s Day Special”, airs this Saturday, May 3rd, at 8pm on KOMO Channel 4 (the Western Washington ABC affiliate). Please watch and, if you can, please donate in honor of a mother you know, love, or admire. For each donation of $10 or more, a card will be sent to the mom telling them a donation to Children’s has been made in their name. What a wonderful Mother’s Day gift! For those of you who are not local and cannot watch, a link will be provided after the broadcast. I will share that here when it becomes available.

Children’s has chosen our family as the face of their uncompensated care donation campaign. They are trying to change people’s misconceptions about who that fund helps. Most families, like us, have insurance. But, co-pays and out of pocket expenses, quickly add up when your child is sick. Many times, the parents have to take time off of work. Bills do not stop coming. You still have to pay your mortgage, electric bill, etc. The uncompensated care fund helps cover the costs of medical expenses for your child. The very last thing you want to worry about when your child is hospitalized is how you are going to pay for it. Last year, when we first applied for help, I figured we’d be denied. When I was filling Eli’s prescription for pre-surgical soap and ointment prior to his heart surgery, the pharmacy clerk told me I didn’t owe anything because we’re covered through Children’s. I was confused. I called the financial department to clarify. When the lady on the other end told me all previous bills and any future bills would be covered by the uncompensated care fund, I cried. I promised her I would one day give back any way I could.

So, this is our way of giving back. You never know if you will one day be in need of Children’s services. I never thought we would. I listened to the telethons on the radio while driving into my hotel sales job. I watched the television specials, crying along with the families as they talked about heartbreak, loss, hope, and cures. I donated each time, NEVER thinking we would one day be recipients instead of donors. Life changes. Circumstances change. It could happen to you.

In other news, Eli celebrated being one year seizure free. I am filled with such gratitude that his battle with Infantile Spasms is over. I admit, I still wince when I see any unusual movement from him, but the anxiety is dwindling. I continue to pray that he stays seizure free forever. There are so many other children that aren’t as lucky.

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He turned 18 months old (a year and a half!) a few days ago. They say time flies when you’re having fun, and lately, we’ve been having a lot of fun!

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Thank you all for supporting our family. This Saturday, we’d love if you joined us in celebrating our journey. Please watch the special and donate to Children’s if you can. Eli, Cody, and their grateful parents thank you. ❤️

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Celebrating our little superstar

Today, 3-21, is World Down Syndrome Day! Get it? People with Down syndrome have 3 copies of the 21st chromosome (instead of 2). Today was a day to spread awareness and celebrate those with that “something extra”. Two years ago, when we first found out Eli had Down syndrome, we were terrified. Our fears were based on so many unknowns. Turns out, there was NOTHING to be afraid of. Our son is amazing and smart and strong and perfectly how he was intended to be. I hope over the past year(s), he has shown you that people with Down syndrome really are more alike than different. Through Eli, I hope to spread awareness. In honor of Eli, please spread love and acceptance, today and always.

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I also wanted to share a couple of exciting things happening in Eli’s world.

A few months ago, Seattle Children’s Hospital reached out to me because they wanted to do a story on Eli. Once the PR department “met” and got to know Eli, they decided he was so cute, and his story so inspiring, they wanted to feature him (and our family) in their spring fundraising campaign. This campaign will consist of direct mailers, full page ads in various publications, ads on the side of a bus (!!), and a possible billboard. How cool is that?!?

A couple of weeks ago, we went to the hospital for a full blown photo shoot. What an experience! We were treated like real models (who, I’ve now realized, have a very tough job!). Chuck even wore make up (totally not by choice)! Not surprisingly, Eli was a happy and willing participant. They were hoping to get shots of our entire family, but Cody had different ideas. He was too busy discussing important nuisances like yellow cheese versus white cheese with anybody who would listen. He did have fun playing assistant to the photographer, for a few minutes.

Today, Chuck found one of the ads in the Puget Sound Business Journals he was delivering. He sent me this picture of the ad.

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I used to read the PSBJ when I was a sales person. Never, in a million years, did I think my child and I would one day have our picture in one. A very proud and surreal moment for this mama!

Also, in honor of World Down Syndrome Day today, Eli’s story was featured on Seattle Children’s website, Facebook page, and Twitter. You can read it here.

Here’s what they said about the story when sharing it:
While pregnant, Melanie Harrington was shocked to learn that her baby had Down syndrome. But that was not all. At less than 2 weeks old, baby Eli had signs of heart failure – a diagnoses requiring heart surgery. At a year, he needed surgery for craniosynostosis. Through all of this, Melanie went from feelings of grief to gratitude, and in honor of World Down Syndrome Day, she shares how the emotional journey enriched her life. Read and share this mother’s touching story.”

I am not trying to brag or boast. I am just so VERY PROUD of our boy (and I knew you would be too!). I was once so scared of what Down syndrome would mean in our lives. Eli has taught me that there was never anything to fear – but there is oh so much to be gained.

Happy World Down Syndrome Day!!
💙💛💙💛💙💛💙💛💙💛💙💛

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Trying to stay grateful while trying to stop the seizures (day 12)

I was going to write an update on Eli yesterday but in light of what happened in Boston, it didn’t feel right. What a sad day – for Bostonians, for the country, for human kind. I adore Boston. It’s one of my favorite cities. I like the Boston Red Sox and I love the Boston Celtics. Most of my family is from, and many still live in, New England. I find it heartbreaking that an event that brings together people from all around the world, was shattered by such insanity. My heart goes out to those that lost a loved one. My prayers go out to all the victims of another senseless act of violence.

As far as Eli and his seizures, things seem to be staying the same. We are on day 12. By now, they should be gone – at least that was the impression I was given. Yesterday, although he was still having seizures, they did seem smaller. Instead of 20-40 spasms in a cluster he had 2 or 3. It was very promising. And then he had one with 25. But, it was still better than the day before. That’s all we’re looking for – progress. Today he woke up and right away had a seizure. Then he had one before his injection and again in the parking lot at the pediatrician’s office, then when we got home, then again after lunch, and again while he lays in my arms while I type this on my phone – most with 20+ spams. So, today we’re right back to where we were. So frustrating!

I did speak with the neurologist yesterday. I expressed my concerns about the ACTH not working, even at the increased dose. His thought is, let’s give Eli “the benefit of the doubt”. He stated that it is very “atypical” for a child with Down syndrome not to respond favorably to ACTH when treating Infantile Spasms. I get it. He finds it hard to believe that Eli will be the one that it doesn’t work on. I should have reminded him though – our Eli is anything but typical. He does things his way, in his time. I’m certainly willing to keep trying it. I’d hate to give up when we already have so much invested. But I also don’t want to miss out on the opportunity to try something else. Time is the enemy. We are dealing with a “catastrophic” seizure disorder. The damage Infantile Spasms does to the brain sometimes cannot be reversed – or it could take years to ‘fix’. That is a scary realization. He’s already experiencing the nasty side effects of the drug (weight gain, irritability, no ‘personality’). I’ve only seen him smile once since getting into the thick of this treatment. That is the hardest part of this process. I miss my baby. I miss his smiles and his laugh. I miss his sweet personality. I miss looking into his eyes and seeing a brightness. Now he just seems ‘distant’. He tires very easily so we don’t get to play much. But, I do get more snuggle time because he always wants to be held.

Please continue praying. Each day I wake up and pray that today will be the day the seizures stop. Each time I give him an injection I say a prayer that it will work and doesn’t just end up doing more harm than good. Each night I pray for a better day. And I also pray for all of you. Every single one of you that prays for, thinks about, asks about Eli. Each one that has offered dinners for us, or to go shopping for us, or to just be there for us. Most people don’t understand what it’s like to have a sick child. They don’t get the strain it can put on a family. I won’t lie, it’s rough. I considered our family to be strong. Heck, we’ve been through a lot already but always weathered the storm. This storm is more like a hurricane. We’re staying afloat, but sometimes it feels like it’s just barely.

But, today I still woke up grateful. My children are alive. I am able to hug them and kiss them and hold them. Some families no longer can. I will never take a day for granted – good or bad.
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Reflect upon your present blessings, of which every man has plenty; not on your past misfortunes of which all men have some.
– Charles Dickens

Rest in Peace Robert Ethan Saylor

“I want my mommy”.

I can’t stop thinking about those words. That was said to be one of the last sentences spoken by Robert Ethan Saylor, a young man with Down syndrome who died in Maryland this past January. For those unfamiliar with this story you can read about it here. For those less inclined to click on a link, here’s a synopsis: Robert and his support person went to see a movie. The movie ended and he wanted to watch it again. His aide went to get the car. Movie theater staff approached Mr. Saylor and told him to pay for the next showing or leave. He did neither. The staff called for security. The rest is extremely hard for me to write about. Three off duty police officers, who were working as mall security, approached Robert. They told him he needed to leave. He was combative. They handcuffed him. At some point, he ended up face down while still handcuffed. He cried out for his mom. The police officers then realized he was suffering a “medical emergency” and released the handcuffs to administer first aid. It was too late. Robert Ethan Saylor asphyxiated. He died at the hospital. The medical examiner listed the cause of death as homicide caused by asphyxiation. This past week, a grand jury decided that the police were not liable for that homicide. Recent media reports have suggested that a heart defect, obesity, and Down syndrome were the real culprits. Sorry, but that is just wrong. He died because he was held face down into the ground and couldn’t breathe. This young man died at the hands of those off duty police officers.

I’ve thought about this post for awhile. I’ve felt very conflicted. This has brought up a lot of buried feelings about Down syndrome and my son’s future because of it. I am sad.

“I want my mommy”. She was on her way. Someone alerted her knowing she would be the one who could diffuse the situation. There are reports that she was literally minutes from the scene.

Do I think these three men set out to kill a young man with Down syndrome? I do not. Do I think they could have handled the situation differently given the fact that Mr. Saylor had Down syndrome? Yes. You cannot treat each individual “by the book”. Police officers are taught to react to the situation at hand. Robert was probably scared and confused. It was said he didn’t like to be touched. The situation was sure to escalate after they laid hands on him. Why didn’t they just back off and wait for his mother or let his support person step in? I’ve heard it numerous times since the grand jury found the police officers not liable – more training is needed. More training? Maybe – but I have to ask – do these people, who were sworn to serve and protect the citizens of Frederick County, need training on how to handle a non-paying movie goer?? Maybe not specifically but I’m quite certain common sense should tell them that handcuffing and putting someone facedown on the ground over a movie ticket is excessive force.

I’m guessing those advising for more training mean training in handling those with special needs. Herein lies the problem. This whole situation has brought up an ongoing debate in my head that I just can’t let go of. I’ve spent most of the past 5 months telling you how Eli is more alike than different. I’ve asked you not to treat him differently. Yet, I look at the sad truth surrounding this tragedy and I realize you have to treat a person with Down syndrome differently sometimes. I am so conflicted about that statement. Should people with disabilities get special treatment? Sometimes, yes. I’m not saying Mr. Saylor should have been allowed to stay in the movie theater for free. But to be removed with such force? That seems a little excessive for anybody. It was a $10 movie ticket.

The should haves, could haves, and would haves are useless at this point. Action needs to be taken to make sure this doesn’t happen again. If more training is needed in Frederick County as to how to handle those with special needs – do it. Maybe add in some compassion and sensitivity training as well.

What really makes me sad about the coverage of this story is that I only know about it because I have a son who has Down syndrome. It has been written about and talked about amongst the Down syndrome advocacy groups I follow. Other parents of children with special needs have blogged about it. But did you know about it? I’m guessing not. Why isn’t there a public outrage outside of the Down syndrome community? A young man was killed over a $10 movie ticket. He was mishandled by police. He happened to have Down syndrome. Does that make it more ok? Is his life not seen as valuable too? Human beings should be treated equally when it comes to compassion, understanding, and love.

My prayers go out to Robert Saylor’s family and the community that mourns for him.

There is a petition on Change.org calling for further review by an outside agency of the Robert Ethan Saylor case. Please consider signing it here.

3-21 Happy World Down Syndrome Day!


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Today is World Down Syndrome Day. Didn’t know that? Either did I until about 6 months ago. But now that I know it I want YOU to know it too! Obviously I am excited about WDSD. A day to celebrate people with Down syndrome? Yes! A day to learn more about Down syndrome? Absolutely! A day to look past stereotypes and see an individual? You bet! Do I wish every day was World Down Syndrome Day? Not necessarily. But I most definitely do wish that our kids and other people with Down syndrome would be celebrated on a daily basis.

While I was pregnant with Eli I spent a lot of time researching Down syndrome. A lot of the literature out there is old and outdated. There are a lot of statistics discussed. I read often about what people with Down syndrome can and cannot do. What they would or wouldn’t look like. What health challenges they may or may not have. I didn’t hear about the overwhelming love I would feel when I first laid eyes on my child. Or how my heart would explode when he first smiled at me. Or the giddy pride I felt the first time he held his head up. I never heard about the happy tears I would cry when my firstborn asked to hold his little brother. Or the fierce need to protect him that overcame me during his open heart surgery. I didn’t hear any of that until I sought out a different kind of support. I turned to people just like me. Groups of moms and dads who have a child with Down syndrome or were pregnant and expecting a child with Ds. Within one of those groups, the International Down Syndrome Coalition (IDSC), I found a network of parents and self advocates (older children and adults with Ds). A group that welcomed me with open arms within minutes of my introduction. Through the IDSC I saw how my child was going to be “more alike than different” yet still an individual. I saw pictures of beautiful children doing what children do. It helped take the fear away. A person with Down syndrome is a person. Down syndrome does not define them. Down syndrome does not define my son. Earlier this week I posted about who I think my son is. If you didn’t see that one check it out (Who I Am). I cannot tell you who he will be. That is for him to decide. He will have choices. He can play sports. He can attend classes with his peers. He can go to college. He can leave home. He can own his own business. Eli can, and will, do amazing things.

So today, World Down Syndrome Day, help me celebrate Eli and rejoice in who he is. Be proud of him. Be happy for us. Be loving to all. Be thankful for your blessings. Be patient with each other. Be kind. Be humble. Be an individual. Be YOURSELF.

In honor of all the babies, children, and adults who are rocking an extra chromosome, I ask you to watch the video at the top of this post. It’s an awesome song with an awesome message featuring some awesome people. Yep, it’s pretty awesome! If you like the video and love the message (which I know you will!) please share it with your friends. Help spread the word about 3-21 and change the stereotypes of what Down syndrome is (or isn’t!).

A special thanks goes to the IDSC and other groups like them that spread positivity and acceptance. Down syndrome is not a death sentence – all life is precious.

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God bless the angels

Last week, my heart was heavy along with the rest of the nation. I couldn’t believe the images I was seeing on the television. Terrified children, worried parents. First responders with their heads in their hands. I cannot even begin to understand the depth of grief the parents, grandparents, sisters, brothers, aunts, uncles, and friends of those affected by the tragedy in Newtown, CT are experiencing. I am just a stranger, living 3000 miles away from the small community of Sandy Hook. I am just a parent who hugged and held my children while I wept for those that no longer could. That night we prayed for those families, and for those children who left this earth way too soon. My beautiful son, not understanding what my saddness was for, looked at me and said, “They go to Heaven with Oliver”. That is the only point of reference he has for Heaven, it’s where our family pet went. I held him and told him how truly special he was. I wish I could keep him so innocent forever. I pray my children never have to feel overwhelming sadness or fear. I pray that when the time comes to ‘cut the strings’ and send my boys off to school, they will have special teachers like those at Sandy Hook Elementary School. Teachers who truly care about my boys and the other students they teach. I was so inspired to hear of the selflessness that took place inside those classrooms that day. All were courageous. There was the woman who stood in between her students and the terror that they were about to encounter. The woman who, while hiding in a closet, held each child’s face in her hands and told them she loved them – just so they could feel the love instead of the terror – just so they would die knowing they were loved (thankfully they all survived). The stories of courage and heroism that emerged amongst the grief was heartwarming. There was one story in particular that brought me to my knees with gratitude. It is the story of a paraeducator. A paraeducator is a person who sits with a student with special needs to give them academic assistance. This helps keep the child in mainstream classes. Eli will have paraeducators when he goes to school. This particular woman, Anne Marie Murphy, died while craddling her student in her arms. He died while engulfed in the arms of the teacher he loved. He was not alone. Read their beautiful story here. I pray that when Eli is in school, his paraeducator will love him as much as Anne Marie Murphy loved her student. God bless her. God bless all the teachers who go to work each day trying to improve the lives of our children. They should never have to be asked to die for their students but the fact that they did makes them heroes. I had become a little skeptical when it came to the education system in America. I wondered if my children will be able to get the learning experience they need. I was disheartened hearing about failing test scores and teachers that don’t care anymore. Last Friday, that was proven to me to be false. There are teachers that care. Care enough about our children that they would literally die for them. Today, tell a teacher thank you. I’m guessing they may not hear it enough. Thank you to my friends and family members who teach. Thank you for what you do. Thank you for caring about the future, the world’s children.

Please remember to cherish every moment you have with your children and loved ones. Don’t take time for granted. It is not guaranteed. This tragedy has made me appreciate the sticky floors and crayon marks on the walls. Ok, appreciate may be too strong a word – But, I try not to get too uptight. I am thankful for the moments – all of them.

God bless Newtown. God bless the angels.