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.

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

Advertisement

Coming soon to your television screen – Eli!

Happy Spring!

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.

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.

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!

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. ❤️

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.

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.


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!!
💙💛💙💛💙💛💙💛💙💛💙💛

Working through my grief…

A doodah bird.

That is all I have left from my childhood memories with my “real” father. A glass bird filled with beads that we made together at the fair.

I was 3 when my parents got divorced. I saw him every other weekend until I was 10. And then he went to federal prison for selling cocaine while serving in the United States Air Force. I never saw him again. He wrote me once from there. A birthday card with promises he would change and make it all up to me. He never did. I wrote him once when I was in my 20’s, sometime after my best friend died. I felt there were things I needed to tell him. Life was too short. I hoped he would write back. He didn’t. I wrote him again before my wedding. I told him I forgave him. I was starting a new chapter of my life and I didn’t want to go into it angry. I let it all go. Or so I thought.

That man died last night. And today I find myself very angry. And really sad.

I have cried many tears. I am left stunned and hopeless. I had always envisioned that I would one day get that apology I had longed for. I thought it would be on his deathbed, if nothing else.

My father was an alcoholic and drug abuser. I know addiction is a disease. But that ten year old little girl thought it was a choice. For years I believed that he didn’t choose me. I have always felt abandoned by him.

Today, every feeling I’ve ever had towards my “daddy” came up. Good and bad. I felt nostalgic. Did he ever think about me? I felt mournful. Was he all alone? I felt regret. I should’ve tried harder. I felt pissed off. HE should’ve tried at all.

It’s not fair that I never got that apology. It’s not fair that I have carried around that feeling of abandonment my whole life. It’s not fair that alcohol and/or drugs took him away. The little girl in me is stomping and yelling, “It’s just not fair!”.

Regardless of his mistakes and our estrangement, he was the man that made me. He helped give me life. For that, I am forever grateful. May he now find peace. Hopefully, I can too.

My boys

I love watching my boys play together. It’s taken awhile, but Cody has finally accepted Eli as part of the family. Now that Eli is more mobile and can actually do things, Cody thinks he’s pretty neat. He’s become so wonderful with his little brother. He can make Eli laugh like nobody else. He now initiates taking pictures with his brother (before we’d have to bribe him to even sit next to him!). He picks activities that Eli can join in on as well (sometimes). He truly has love for him. It is such a relief. I was worried there for a bit.

I am so thankful every day for my two boys. God blessed me by making me their mommy. Parenting is definitely challenging at times, but today I am reminded that the rewards (hugs, kisses, the random “I love you Mommy” from the backseat of the car) far outweigh anything else. ❤️

In the “know”

At the inception of this blog, I promised to be honest about my feelings – good or bad. I have often used this as an outlet for my emotions. In a way, this blog is my journal. I write for those that read Our Journey Through Life but mostly, I write for me.

Sometimes, I write just to share. I love sharing our family with those that are interested and/or stumble across this blog. Other times I write to encapsulate a memory. It’s a way to keep track of all the (mostly) wonderful things that happen in our lives (and gets me out of having to write much in the baby books!). Many times, I write a blog post to help me process. As I write, the feelings reveal themselves and I work through them.

As much as I hate to feel this way, today I am writing because I am a little bummed, for lack of a better word. We went bowling today. Half way through our second game, a family joined us in the adjoining lane. They had a teenage son with them whom I suspected had Down syndrome. I found myself hesitant to say anything because I just wasn’t 100% sure. And why did I really need to say anything anyway? They were having a good time and I enjoyed watching him interact with his family. As Eli waved and smiled at them, I wondered if they knew that he had Down syndrome. Again, this is where the secret handshake would come in handy! When we were packing up our things to leave, the mom said to me, “Where do you guys live?”. Kind of confused, I told her and then she said, “Are you familiar with the Down syndrome community?”. Well, there it is. She knew. She didn’t ask, she just knew. I left wondering what it was about Eli that made her so sure he had Down syndrome. As we drove home, I was so conflicted with my feelings. Who cares that she knows I thought to myself. It’s not like it’s something we’re trying to hide. I guess I was just a little shocked. She was just so certain that she didn’t even bother to ask subtly.

I’m not sure why the unsettling feelings arose in me after that encounter – But, they did. So now I’ve spent half the night obsessing over why. I am so proud of Eli and everything about him – His extra chromosome included. Who cares that his features gave him away? Why does it matter how she knew? But it does matter to me. And I don’t know why.

One of the very first things I said when Eli was born was, “Can you tell?”. What I meant was, can you tell he has Down syndrome. I am so ashamed of that. My newborn son was struggling for breath (I wasn’t aware of that at the time – I thought they were just checking him out) and I was worried what he looked like. I can never take those words back. Never.

Here I am, almost 16 months later, and that ugly, shallow voice inside me has returned. You can “tell”. People know. Apparently, it’s obvious. Now he can be pre-judged with automatic limitations put on him. He can be a stereotype to people. I DON’T WANT THAT! I have lived in this blissful world of baby oblivion. I want to stay there. Sure, my son has a therapist come over each week to help him learn to crawl, stand, walk, talk – but therapy has become just a part of life. We are blessed with therapists who NEVER tell us what Eli can’t do but constantly tell us what he can, and WILL, do. I don’t want to deal with the other stuff. I really, really, don’t.

I know that mom at the bowling alley today was just trying to be supportive. She invited us to an upcoming event. She was reaching out to us and I turned it into so much more.

It may be time to go back and take the advice I once gave my pregnant self. Stay in the moment. Don’t worry about the future, the what if’s, so much. Everything will be ok.

Sometimes, feelings surface that we just don’t understand. Today is one of those days. Not every day will be a glass half full kind of day. Some days, you fill that glass with wine, drink it dry, and fill up a new glass tomorrow.

Eli has 47 chromosomes and he was called out on it today. So what? That extra chromosome just makes him extra cute!

Cheers!

Happy Valentine’s Day

❤️The love of a family is life’s greatest blessing.

The anticipation is building…

It’s Super Bowl Sunday! I love this day. I love it even more because my beloved Seahawks are playing.

There’s a buzz around the city. Everywhere you look there’s something that represents the Seahawks. We have our flags up and our jerseys on. Even the Empire State Building in NYC has been lit up in Seahawks colors most of this week!

This is only the second time our team has been to the big game. Last time, 8 years ago, our hearts were left broken amongst whispers (or screams) of referee incompetence. I left the bar in tears. I was devastated. But, this time it’s different. We go in with the #1 ranked defense. Yes, we’re playing the team with the #1 ranked offense – but it’s been said many times before DEFENSE WINS CHAMPIONSHIPS. This is OUR year. We are ready. We’re all in!

🏈GO HAWKS!!🏈

Happy 1st ‘Heartiversary’ Eli!

Today is Eli’s ‘Heart Day’! It has been one year since Eli’s heart was repaired. One year ago we were anxiously handing our child over to doctors for open heart surgery. I can picture it like it was yesterday.

I can also still feel the total calmness that washed over me. The voice in my head telling me it was all going to be ok. I put all my faith in God. I ‘Let Go and Let God’. I had full trust in his surgeon and his team. They were on our side. They were going to fix our boy.

Here it is, one year later already. What a year it’s been. If his heart wasn’t repaired so successfully, who knows how (or even if) he would’ve gotten through the other setbacks he’s faced. Open heart surgery was his first of many obstacles last year. Because of it, he was able to conquer each one. I am so very thankful for this precious boy and his healthy heart.

WHAT A DIFFERENCE A YEAR MAKES!

Our “outing” at the zoo

We’ve been outed. For the first time since Eli was born, someone (besides doctors and nurses) acknowledged that they knew he had Down syndrome.

We went to the zoo on Sunday. There was a family there that had a little girl with Down syndrome, she was maybe 8 or 9. The group she was with was quite large. Too many kids and adults to try and figure out who belonged to who. But, one woman (someone’s mother I’m assuming) looked at Eli in the stroller and did a double take. She knew. I took him out and we sat down to “play with” the otters (through the glass). I could see her out of the corner of my eye watching him. Now I know what other parents must feel like when I’m staring at their child. I’m not really staring – more like watching admiringly and/or trying to decide if I’m confident enough that the child actually has Ds to say something. We definitely need a secret sign or handshake that signifies we’re part of the “club” to eliminate any awkwardness that could be created by the not staring. As I noticed her watching him, I started to get nervous. What if she asks me if he has Down syndrome? I thought to myself, feeling a little panicked. You see, most of my friends have already had their moment. That moment when someone “outs” them as having a child with Ds. I’ve always said I think I’ll cry when someone finally asks me. I’m actually not quite sure why, but I was always afraid that would be my reaction.

After a few minutes with the otters, the lady and her group started to exit the exhibit. We were heading out as well. As we were passing each other, she leaned over to me and said, “Your son is beautiful” and then she looked at Chuck and said, “Really, he’s absolutely beautiful.” What a wonderful way of acknowledging that she knew. I didn’t cry. I beamed. I’ve decided that will be the way I acknowledge parents of children with Ds from now on. It can be our not so secret “handshake”. It’s so much more pleasant than “Does your child have Down syndrome?”. There’s always a fear that you could be wrong and unwittingly (and unnecessarily) upset the parents. Plus, what’s the point of asking? The only real reason is so you can point out that you too are part of the “club”.

It may sound weird to refer to Down syndrome parenting as a club but that’s the best way to describe it. At first, you don’t want to be a part of this club. But eventually you come to realize something I actually just told a new mommy today – “Welcome to the best club you never knew you wanted to be a part of”!

Anyway, thank you to that wonderful woman at the Woodland Park Zoo for acknowledging that we too are part of the wonderful club known as Down syndrome. Thank you for acknowledging Eli in such a meaningful way. I will never forget it.