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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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

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.

A couple of things I learned about our superhero yesterday – He likes birthday cake… 20131028-230915.jpg

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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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Video

Happy 1st Birthday Eli Michael!

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Here is a video I made to celebrate Eli’s first year. What a year it has been! Going through the countless number of pictures, I am reminded just how tough my baby boy is. He is a fighter. A warrior. My hero. I know I say this a lot, but I am truly blessed. Happy birthday to my sweet, funny, determined, inspiring little man. I am so proud to be your mommy.

Craniosynostosis, irrational fears, and a confession

Eli’s surgery is scheduled for 11:15am this Friday. I do not want to do this. I do not want to say good bye and hand my precious son to strangers. Again. And no, it is not easier because we’ve done this before. In fact, this time is harder. A lot harder. When Eli had heart surgery he was a sick baby. He didn’t eat. He struggled to breathe. We knew surgery was our only hope of fixing him. We were ready to have a healthy baby. This time, although the surgery is necessary, we do not see the detrimental effects of his craniosynostosis – yet. Besides his misshapen head (which most people don’t even notice until I point it out because it’s in the back), he shows no outward signs of being “sick”. That’s the thing about craniosynostosis. The surgery is a preventative surgery. If left untreated, the brain will stop growing because it will have nowhere to go. Obviously, if that were to happen, it would be devastating for the child developmentally. But handing our outwardly “well” baby over for a majorly invasive surgery is causing extreme anxiety for this mama. Not to mention the fact that his type of craniosynostosis, lambdoid, is extremely rare. The surgeons have done hundreds of CVR (Cranial Vault Reconstruction) operations this year alone. But when I asked how many lambdoid surgeries they’ve done this year, the reply was alarming. Eli will be their fourth. Yep. They’ve done this surgery three other times this year. That puts me at ease. Not really. Ugh. Eli is doing great. He’s hitting milestones and making strides daily. He laughs and plays and has the sweetest little personality. What if something goes catastrophically wrong and that all goes away??? I know I shouldn’t think like that but it’s hard not to. I want to stay positive but I just can’t. I. Am. Terrified.

I have a confession to make. I am afraid God is going to punish me because I once wasn’t sure I wanted Eli. When I was pregnant and we first found out our baby had Down syndrome I thought horrible thoughts. I actually wished I would have a miscarriage. Before you lambaste me and tell me how horrible I am, please understand I was scared. I had no idea what having a baby with Down syndrome would mean for my family. After I found Acceptance I regretted every negative thought I once had. I prayed for forgiveness. I lived fearfully throughout my pregnancy that I would actually miscarry. I begged God not to take my baby. Once Eli successfully made it through open heart surgery I felt relieved. I felt unburdened. And then he was diagnosed with craniosynostosis and we were told he would once again have to undergo surgery. And then the fear came back. All of those negative feelings of regret washed over me like a tidal wave. I was convinced this was all my fault. Since then, I have prayed constantly. The rational side of me does have faith that God loves me and He loves Eli and knows how much I need him. The irrational side of me is still just that, irrational.

I love my children more than anything in this world. I thank God every second of every day for choosing me as their mommy. I am forever grateful that I gained clarity and compassion on that beach back in June 2012. I felt The Lord’s presence that day and I felt it again while Eli underwent heart surgery. I pray for the same peace on Friday.

Our Eli might look different after surgery. His head shape will change. The alignment of his eyes and/or ears may change. He will have a jagged scar from ear to ear over his head. But Eli will still be Eli. He will still have a thousand watt smile and he will continue to steal the hearts of many. He is fearfully and wonderfully made. He is a child of God and he is loved more than any words could begin to describe.

Thank you all so much for your thoughts and prayers. It means so much to Chuck and I that so many people truly care about Eli and our family.

I will update this blog once we are on the “other side”. Surgery is estimated to take 5-6 hours. Eli will be away from us for about 8 hours. I will be counting down the minutes. I will miss this face. 20131003-022536.jpg

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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Meeting milestones

Eli accomplished two major milestones over the last couple of weeks. First of all, he mastered the unsupported sit.
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He has thoroughly enjoyed seeing the world from a whole new point of view.

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Then, two days ago, while his new speech therapist was here, he crawled! He went commando style (on his belly using his legs to inch forward) after a piece of paper of all things. Who knew that’s what it would take! His determination was fierce. I was in awe. Next we will work on hands and knees crawling but I’m in no hurry. I appreciate each milestone he hits, when he hits it.

I was chatting with a mom who is new to this journey (she found out her son had Down syndrome at birth six weeks ago). I told her that one of the wonderful things about Down syndrome is that our babies stay babies just a little bit longer. I appreciate every little thing Eli does instead of just the major milestones. The other day he mimicked his daddy by raising his eyebrows back at him. Our claps and cheers would’ve suggested he did something much more impressive – but to us, it was the most amazing feat ever. We celebrate everything – so much so Cody now claps and cheers each time Eli takes a bite of food or picks up a toy. I guess mommy and daddy aren’t the only ones ridiculously proud of the youngest member of our family! Have I mentioned what an awesome big brother Cody has become?!
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I hesitate to “brag” about some of Eli’s accomplishments out of fear of hurting another parent’s feelings. It’s hard when you hear about a child accomplishing something your child has yet to do. You start to feel a tad jealous or inadequate as a parent or fearful you aren’t doing enough to help your child succeed. We’ve all been there. We’ve all thought it. None of it is true but they are rough feelings to process. Being the parent to a child with special needs takes extra time and energy. I never thought I’d have to spend 2+ hours a week with a therapist teaching my child how to sit, crawl, speak, and eat. I was enough for Cody, but Eli requires more focus. That can be daunting at times. It has been overwhelming some days. But, the look of satisfaction on Eli’s face, and the pride I felt swell up in my heart, makes every single second worth it.

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I continue to be inspired, in awe, and so very proud of both of my sons. We are truly blessed.

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Officially SEIZURE FREE

Eli had his follow up EEG today. His neurologist said everything looked perfect. All brain activity is normal. Woo hoo! Praise the good Lord. He will be off all medication in two weeks. There is no plans for a return visit to the neurology department unless the seizures return. Infantile Spasms can re-appear but we will remain hopeful that the seizures are a thing of the past forever…Soon to just be a distant memory. Eli is especially happy not to have to partake in any more EEG’s. He is not a fan.
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I am so thankful that this whole process was relatively easy compared to some of the horror stories I’ve heard about. Infantile Spasms are very hard to treat sometimes. We are lucky that we caught them super early, treated aggressively right away, and got the whole thing under control within 3 weeks. I give thanks to the doctors who supported us throughout this process, most notably, Eli’s pediatrician Dr. Partridge. She took me serious from the get go. I am forever grateful to have such an amazing professional support system in Eli’s corner. Go team Eli!!!

It is awesome to see him reaching so many milestones now. He rolls over from back to front and from front to back. He can sit up unassisted for a couple of seconds. He reaches up when he wants to be held. He can sit in a high chair, a Bumbo, and an activity jumper. He may be a little behind at reaching some milestones but he is catching up at record pace! He is a determined baby that is for sure. Eli also had his first taste of rice cereal on Mother’s Day. He definitely seems to enjoy it!
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Next we’ll try fun stuff like applesauce, bananas, and squash (those were Cody’s favorites)! I’m excited to have my baby back!!!

Thank you all for prayers, love, and support. This road would be a lot harder to travel without so many of you routing us on! I am so, so, so proud of our boy for getting through another challenge. He inspires us daily. As always, we are truly blessed.
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