A resolution to end hurtful words

I posted this on Facebook today. I thought I would share it here as well.

I’ve seen a lot of people putting their resolutions and goals for 2014 on FB. This year, will you (my friends and family) consider a resolution of stopping the use of the words retard and retarded? My tolerance for the word is at an all time low. Too many people have said it in front of me, in front of Eli. One day, Eli may hear that word in a derogatory way aimed at him. When he asks me why someone would call him that, I will explain that it’s a word bullies use. Do you want my little boy to think of YOU as a bully? Please stop the use of the “R” word. Please teach your children not to use it. For Eli, his friends, and all the people with disabilities that the word potentially offends. From the bottom of my heart, I thank you.

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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

Giving glory

Today we went to church. Although we are Christians, we don’t go to church regularly. I’ve always wanted to but never found a church that “fit”. The larger churches seem intimidating and the small churches seemed exclusive. Where we went today is a smaller church in the Snoqualmie Valley, called Valley Christian Assembly. We’ve been a few times to this particular church in the last year. My mom, who is now retired, used to work with one of the members of the church, Michael. He asked his church family to pray for our family throughout my pregnancy, Eli’s birth, heart surgery, seizures, skull surgery and various other hospitalizations and illnesses. Each time we’ve been, people tell us how much Eli’s story has touched them. Complete strangers come up to us and tell us how they’ve prayed for our family. It’s actually quite amazing. One gal refers to Eli as “Our boy”, as in the church’s. When they say church family they aren’t kidding. These kind people have embraced our family as their own. How wonderful to feel a part of something so connected.

Today, Pastor Rick asked everyone to take a few minutes to reflect on the past year. To give glory to God for all of it. Surprisingly to me, as I stood there holding Eli and reflecting on all of the hardships he’s been through this year, I had tears falling down my cheeks. I wasn’t crying because I was sad though. I was overwhelmed with gratitude to God for getting my family, and Eli, through it all. He never let us down. He never left our side. I won’t lie, there were days that I would question Him as to why this was happening to us, to Eli, but my faith always brought me back to trusting Him. I have grown so much in my faith this past year and a half. That is one of the many things I am so very thankful for. As well as those wonderful people in a church 45 minutes from our house. I am so thankful for every single one of them. For praying for Eli and our family. For welcoming us with open arms. For having a hand in the strengthening of our faith. God leads us to people, for one reason or another, and this past year He’s led us to a congregation that we are happy to be a small part of.

**Cute story: During the worship service, when Pastor Rick was speaking, Eli kept doing the sign for more. Apparently Eli really likes the Pastor and his teachings as well!

‘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. 💛

The frog with five legs

Every morning Cody runs to the fish tank to find the two frogs. We have one very special frog whom we’ve named Five Leg Freddy because, you may have guessed, he has five legs!

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We didn’t realize he had an extra leg until we got him home and into the fish tank. That is when I told my husband that this frog had a broken leg. Upon further examination, we realized it was actually an extra leg! I found it fascinating. Over the two weeks that we’ve had him, I have watched him in awe. He was just like the other frog. He swam using 4 legs and came up to the top every so often to breathe. We were told that frogs weren’t very social and tend to hide. That is why we play the daily ‘search for the frogs’ game. But, today was different. Cody found Freddy right away. “There he is!”, he happily exclaimed and pointed to the frog -floating at the top of the fish tank. He was dead. Cody didn’t seem to understand so we didn’t tell him. Tonight we sent Freddy off with a proper goodbye (for a frog) and will tell Cody in the morning that Freddy went to Heaven.

I actually cried when I realized our special frog had died. I felt like he was perfect for our family. Many people may have taken him back to the store because he was “defective”. But we kept him and treated him just like we did the other frog. That story sounds familiar. 😊

Rest in peace Five Leg Freddy.

***This story was brought to you by NyQuil (I am sick and in bed). Blame that if you think it’s crazy!

You’ve Got A Friend In Me

Yesterday marked one year since we got to bring our little pumpkin Eli home from the NICU. This Halloween he got to trick or treat with his best friend, his brother. Cody picked out their costumes. Buzz Lightyear and Woody. Seems fitting.

Have you ever listened to the theme song of the Toy Story trilogy, “You’ve Got a Friend In Me” by Randy Newman? It’s like it was made for Cody and Eli (aka Buzz and Woody).

Here’s the lyrics:

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy you’ve got a friend in me
Yeah you’ve got a friend in me

You got troubles and I got ’em too
There isn’t anything I wouldn’t do for you
We stick together, we can see it through
‘Cause you’ve got a friend in me…

Some other folks might be a little bit smarter than I am
Bigger and stronger too
Maybe
But none of them
Will ever love you the way I do
It’s me and you boy…

And as the years go by
Our friendship will never die
You’re gonna see it’s our destiny
You’ve got a friend in me…

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Hope everybody had a safe and happy Halloween!

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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