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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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!

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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.

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Good riddance to 2013

As I sit here reflecting on the past year, I am thankful for so much. Most importantly, the health of my children. Many people take for granted that their children will be born without any challenges. We did not. We knew Eli would have a heart defect. We knew he had Down syndrome. We did not know the other obstacles he would eventually face. Last New Year’s I was so hopeful. I was anxiously awaiting Eli’s heart surgery. I was confident that my little boy would be fixed and we could get on with things. I thought that would be it. It’s actually a little unbelievable that I truly have that much more to be thankful for this year. A healthy heart, a seizure free brain, room for that brain to grow.

It’s amazing to think about all Eli, and his little body, went through this year. First, he conquered open heart surgery. What a trooper he was. Home from the hospital after 5 days. That was our first sign of how truly strong he is. Our little fighter.

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The next setback our sweet baby encountered was when he came down with Bronchiolitis. What a long week in the hospital that was. Thankfully, his smile kept us going each day.

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I don’t think I’ve ever felt lower than when Eli had Infantile Spasms. I felt so helpless. I took a video of his seizures so that I would have something to show the neurologist. You can hear me in the background telling him it’ll be ok and that mama is going to fix this. What you can’t hear is the terror I felt. I wasn’t sure I could fix it. I was so scared to lose my baby. I watched that video the other day. It was very hard to watch. For six weeks we saw the beautiful smile of our baby fade. He didn’t laugh. He was lost to a steroid haze.

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But, that’s not who Eli is today. He’s a healthy, happy boy who’s been seizure free for 8 months now. Thank The Lord.

When he was diagnosed with Craniosynostosis it rocked me to my core. I wasn’t sure I could sit by and let my baby take on any more. Why couldn’t he just catch a break? But, once again, he sailed through surgery and proved why he is so deserving of the moniker, Super Eli. He has the strength of a superhero for sure.

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Someone recently asked me what my wish for 2014 was. I answered that easily – I want Eli, and Cody, to stay healthy. No more surprises. We are a strong family but we would like a break. 2013 has been brutal in so many ways for us. I am very ready for it to be over. It’s been hard keeping it all together. We don’t have a lot of local support, outside of a select few people. It sucks, but it is what it is. Our saying in our house is, “We’re all we got, we’re all we need!”. We are only whole when all four of us are together. I pray we have more times together than apart in 2014.

There were some really great things that happened in 2013 too. Most importantly, Eli has a fixed heart, he easily (in the grand scheme of things) overcame Infantile Spasms, and successfully made it to the “other side” of skull surgery. He is currently healthy. He has continued to amaze his therapy team and doctors. He makes us so proud with each new skill he acquires and each milestone he hits. His brother also amazes us. Cody is smart, and funny, and so observant. The other day he actually noticed that my mom had different tires on her car. He asked her “What’s up with your wheels, Nana?”. She had her regular tires switched to snow tires. Our 3 year old noticed. Unbelievable. Cody is undeniably the most energetic in our house. He keeps us all on our toes and we wouldn’t want it any other way. He gives the best hugs and kisses and my favorite thing of all is when he grabs my hand and says, “Mommy, I love you. You’re my best friend.” Granted, he has many best friends but it’s still the sweetest thing on the planet to hear him say that!

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I “met” some of the most amazing people this year. People who will be friends for a lifetime. Some are friends from the Down syndrome community. Others are people I met because they too had a child (or grandchild) with Infantile Spasms. The newest friends are other cranio moms. They have children that have been through, or are going to have, cranio surgery. All these people get it. They get me. They don’t judge or question. They understand and empathize. It’s amazing the amount of support you can receive from virtual strangers online (and a few in person!). I have found solace and gained strength from these women (and their children) on many occasions.

2013 changed me. I once was a glass half empty kind of person. Now, remarkably, I’m a glass half full kind of gal. No matter the challenges in life, I try to see the positive – most times. I remind Chuck, when he’s feeling blah, all that we truly have to be thankful for. And on my bad days, he reminds me. Thankfully, our boys keep us smiling through it all – the good and the bad. They are our lights at the end of any tunnel.

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Thank you for loving our family. Best wishes for a healthy, and happy, 2014. Bring. It. On!

xoxo Melanie

One month post op and a donation in honor of a special one year old

It’s been a month since Eli’s surgery. He’s doing great! Honestly, besides the scar across his head, you’d never know he had a major surgery so recently. He amazes me. I love this kid!

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He’s rocking that haircut and the scar!

In honor of Eli’s 1st Birthday we asked party guests to bring donations for Cranio Care Bears, an amazing organization that supplies care packages and support to families of children who are undergoing surgery. One of the founders, Shelby Davidson, sat with Chuck and I while we waited for Eli to get out of surgery. Her presence was a Godsend and I am lucky to now call her a friend. Here is Eli with the donation pile (31 pairs of pajamas, tons of baby toys, toiletries for parents, and some cute stuffed animals!).

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Today, Eli and I were honored to deliver the donated items to Shelby when we went out to dinner with her and a few of the other cranio moms and babies. Over the last year and a half, I’ve been fortunate to make so many new friends – all because of Eli! There’s the Down syndrome mommies (we call ourselves Rockin’ Moms cause our kids ROCK their extra chromosome). And the heart mommies. And the moms of children who have/had Infantile Spasms. And now the Cranio mamas. (Not to mention the therapists and doctors and nurses we’ve met and friended along this journey!). Our boy and all his extras have led us to some really great people. Friends for a lifetime who truly get it. 💛

Celebrating Eli

We celebrated Eli’s 1st birthday – twice. First, on his actual birthday, we opened a few gifts and went out to eat where he was sung to and given his first ice cream sundae.

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While the servers gathered around singing “Happy Birthday” I teared up. By the time they were done, I was crying. Our poor waitress must’ve thought I was insane. I resisted the urge to tell her I was crying because I once didn’t think we’d ever get to his first birthday. I didn’t tell her he was a survivor of open heart surgery. Or that he had recently undergone skull surgery. I didn’t even blurt out that he has Down syndrome. I just sat there, swelling with pride, and quite possibly confusing the hell out of the poor girl. Eli loved his sundae and I loved celebrating our little fighter with my husband and oldest son.

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On Sunday we had Eli’s 1st birthday party. I decided to play “crafty mom”. I was determined to throw a party like the ones I see on Pinterest. It couldn’t be that hard, right?! Well let’s just say crafting has never been my forte, BUT, I pulled it off! There were many Pinterest inspired decorations that, in my opinion, are definitely “pin” worthy.

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These Super E lollipops were inspired by something I saw on Pinterest. I came up with the “lollipop tree” all on my own. I found the Superman piggy bank at Walmart. I asked party guests to write down a wish for Eli and put it in the piggy bank. When he’s 18 we’ll smash the pig and read the wishes. I did the same thing for Cody’s 1st birthday. For 2 1/2 years I’ve resisted the temptation to open up his piggy and read them. I look forward to reading each greeting with my grown sons on their 18th birthdays, God willing.

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I also made this Super Eli #1 birthday candle. I may have pointed it out to every guest who admired the cakes (which I did not make) because I was so proud of how it turned out. Definitely my finest crafting moment ever.

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He was a trooper the entire time. He didn’t crash until the very end. And then he crashed hard. My best friend put it best when she said, “The life of a superhero is quite exhausting”!

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We had a fabulous time rejoicing in all that we have to celebrate. Eli is happy and healthy. His strength is awe inspiring and his resilience is something to be admired. He has friends and family who sincerely love him. It was truly a wonderful day!

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Love creates awareness

October is Down syndrome Awareness Month. I remember writing about that last year, before Eli was born. I was certain I would be Eli’s biggest advocate. Now that we’ve had the pleasure of getting to know Eli for almost a year, I’ve realized he does a lot of the advocating himself. People genuinely love him without ever even meeting him. I have thought about what I would like everyone to be most “aware” of when it comes to Down syndrome. My wish is that through pictures of Eli, interacting with Eli, and loving Eli that you see past antiquated stereotypes. He is a son, a brother, a nephew, a grandson, a cousin, a friend. He has feelings and emotions. He is smart and funny (and obviously adorably cute!). He happens to have an extra chromosome but that will not stop him from having hopes and dreams, just like the ones we already have for him. His smile can light up any room and I know he will one day change the world. Please teach your children to be tolerant and accepting of all people. Please teach love. I truly believe that love can, and will, conquer all. Eli has taught me that. See, he already is changing the world.❤️

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Last year I talked about the Buddy Walk and how we weren’t ready to go yet. This year we were excited to go and hang out with so many of our new friends! Unfortunately, Seattle’s Buddy Walk is scheduled for this Sunday, October 6th. Eli’s surgery is on Friday. If we’re walking anywhere on Sunday, it’ll be the hospital halls. This year, we’ll be at the Buddy Walk in spirit.

Tomorrow we find out what time Eli’s surgery will be. I’ll be honest, I’m a wreck. More on that in the next post….
Until then, I’ll leave you with Eli’s 11 month old (already?!?) picture collage.

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10 months old!

Look who’s 10 months old already!
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I seriously cannot believe it! I guess time flies when you’re having fun – and, right now, we are having A LOT of fun. I hate to say it, but it’s almost like the calm before the storm. Eli must know he’ll be laid up for a few weeks after skull surgery – he’s trying to get everything “accomplished” by then. It’s almost like he has an internal list and he’s checking things off of it.

Sit up. ✅Check.
Crawl. ✅Check.
Stand. ✅Check.
Eat finger foods. ✅Check.
Drink from a cup. ✅Check.
Associate words with people. ✅Check.

I guess he doesn’t want to fall too far behind. He knows how hard playing “catch up” is. Both of his therapists (PT and ST) call him a rock star and are impressed that he’s on target with “typical” kids his age. Given the obstacles he’s had to overcome, he truly amazes me. I feel guilty for ever doubting, or questioning, his ability. I guess he gets the last laugh!
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