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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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.

By Melanie Posted in Life

The anticipation is building…

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

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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!

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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!

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🏈GO HAWKS!!🏈

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

‘Twas the night after Christmas

Merry Christmas! The last couple of days were fabulous ones. Being around Cody made me feel like a kid again! Making cookies for Santa and tracking the big guy’s journey from the North Pole on the computer had my 3 year old filled with more excitement on Christmas Eve than I had ever seen from him. When the NORAD site showed that Santa was in the United States (Connecticut to be exact) Cody screamed with glee and exclaimed, “He’s almost here! He’s really coming!”. It. Was. Awesome. His happiness makes me love Christmas even more (and I didn’t think that was possible!). Next year, Eli is sure to join in the excitement which will make it doubly awesome. I’m already counting down the days.

ELI IS DEFINITELY ON THE NICE LIST
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THIS ONE TREADS LIGHTLY, BUT THIS YEAR HE MADE IT ON THE NICE LIST
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MAKING COOKIES ON CHRISTMAS EVE
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MILK AND COOKIES FOR SANTA AND AN APPLE FOR RUDOLPH (so he can “get energy”)
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TRACKING SANTA’S PROGRESS
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CHRISTMAS EVE TRADITION – Reading ‘The Night Before Christmas
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OUR NEIGHBORS SENT US THIS PICTURE. THEIR KIDS WERE EXCITED BECAUSE THEY COULD SEE WHERE SANTA LANDED ON OUR ROOF!
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THIS IS ELI’s SURPRISED FACE. I’M SURE HE’S WONDERING HOW SANTA FIT EVERYTHING DOWN THE CHIMNEY!
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PRESENT TIME
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MY FAVORITE GIFT WAS THIS NECKLACE THAT CODY PICKED OUT FOR ME. It could’ve been a singing fish for all I cared – I was just thrilled that he picked it out for me!
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THE AFTERMATH – Where’s Eli?
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My parents joined us for post Santa festivities. We had brunch and opened more presents! Neither kid took much of a nap (Eli did get 15 solid minutes in his Nana’s arms!) and were completely over stimulated by toys and sugar!
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No gift under the tree can ever compare to these two most wonderful gifts bestowed upon me. I know I say it a lot but I am so, so blessed.
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It’s almost Christmas!

I love this time of year. I truly love it. I love the memories and traditions we’re creating for our family. I love the happiness and joy that seem to be prevalent around the city. I love the Christmas music, the lights, the decorations. I often wish the spirit of Christmas would continue throughout the year. But, if it did, I suppose the holiday season wouldn’t be near as special.

This year, instead of going to a tree farm to cut down our Christmas tree, we went to Fox Hollow Farm and picked out a pre-cut Christmas tree. We rode on a train, played in some kid sized houses, pet horses, a baby cow, miniature goats, a pig, cats, a dog, and some very large turkeys. The best part of the day was when Cody actually talked to Santa and let him hold him – just long enough to tell him want he wanted for Christmas! He hasn’t been that close to Santa since his very first Christmas when he was only 7 months old.

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Later that evening, Eli was thrilled to sit on Santa’s lap at a charity event my friends put on for Seattle Children’s Hospital. Cody was not interested and felt the task had already been completed. He told him his list once already and was adamant he would not speak to or sit with him again (lol).

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Both boys helped decorate our tree and Cody got the honor of putting the star on top. He was excited!

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Cody swore it was Christmas Eve when he woke up to find it had snowed! I tried to explain to him that snow didn’t equate to Christmas but the movies he’s watched don’t help with that theory. He’ll be disappointed when he wakes up this Christmas to no snow on the ground – but he’ll get over it quickly I’m sure!

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The best part of Christmas is spending time with those you love. And this mama loves these boys!!

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As our countdown to Santa’s arrival gets shorter and shorter, I wanted to be sure to pop on here and wish you all a very Merry Christmas. I can never thank you enough for following my family’s journey. As life becomes a little more monotonous (thankfully!) I find that I have less to write about, or maybe it’s just that I have less time now. Either way, I appreciate you sticking this last year out with us. Thank you for every prayer, every note of encouragement, every kind word spoken about my little family. I am so grateful for the new friendships I have gained because of this awesome path God chose for us! I’ve said it numerous times before but I can’t say it enough – We are blessed. Truly, truly blessed.

Merry Christmas!
xoxo Melanie

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A boring blog update (but there’s cute pictures!)

I can’t believe it’s been a month since I’ve written a blog post. Life has just become so normal, maybe even a little boring. There’s just not a lot to report.

Eli recently came down with, and then shared with the rest of us, a nasty stomach bug. We’re just now getting over it. Fingers crossed it stays away and we remain healthy the rest of the winter (yeah right!). Confession: When Eli was sick I initially thought it was a more serious issue. I actually packed a hospital bag because I just knew we’d end up back in the hospital. Thankfully, we didn’t. I think I suffer from PTSD due to the other hospitalizations. In my defense, I was concerned that he possibly had a head injury because Cody accidentally landed on him while trying to “dunk” the basketball by leaping off the couch. If the fast acting meds they gave him at the pediatrician’s office wouldn’t have worked to stop his nausea and vomiting, we were going to have to go to Children’s for a CT scan. Ok, so maybe I exaggerated when I said boring – there never seems to be a dull moment around here!

We had a lovely Thanksgiving at my parents house. We were joined by some of our California family. They have 2 1/2 year old twins, Cody and Eli’s cousins. The kids had fun playing with each other. Makes me really long for more family around us. I loved watching Cody playing with “his cousins” (just his, not Eli’s, as he declared more than once!). I didn’t grow up near my cousins. I always wished I did. I would love to give that to my boys. One day maybe…

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Eli really enjoyed his first traditional Thanksgiving meal. He dived right in and ate almost everything on his plate. A picky eater he is not (unlike his brother who ate Mac and Cheese for Thanksgiving!).

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Now we’re getting ready for Christmas. The house is decorated. The outside lights are up. Our Elf (on the shelf), Buddy, is up to his shenanigans. The only thing we’re missing is a tree. We were supposed to go this past weekend but, with everyone sick, we had to postpone. My favorite part of Christmas is decorating the tree. This year we’ll have two little helpers. I can’t wait! I love sharing the magic and joy of the season with them.

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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. 💛