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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If I knew then what I know now…

Yesterday (May 8) marks the one year anniversary of the day we got “the call”. The call that confirmed our unborn baby has Down syndrome. Our Down syndrome day. The day our lives were forever changed. One year ago we thought it was the worst day of our lives – the ending of our life as we knew it. Truth be told, it was just the beginning. The beginning of actually living life. A second chance to appreciate the world and all that is in it. My eyes were opened (and looking quite scared I’m sure) that day in May. My heart was opened October 25 when our little boy was born. Oh we are so blessed. So, so blessed.

Please note, our lives are not perfect. Not even close. Although I try to remain upbeat and positive in this blog, we struggle just as any family does. But, our challenges are not because Eli has Down syndrome. We have more bills than we have money. Our car is in the shop. Our toddler decided to throw an embarrassing tantrum in the middle of the waiting room at the doctor’s office. I’m sure those “problems” are probably similar to half the population. It’s called life.

We went to the beach this past weekend. The same beach that we went to last year that helped cleanse our souls and pointed us in the direction towards acceptance. To read about that trip (and the sad, overwhelming few weeks leading up to it) check out my very first blog post – ACCEPTANCE. This trip, I spent a lot of time reflecting. I thought about the scared woman who cried so many tears after receiving that phone call. The husband who physically and emotionally checked out for a week. The friends and family members who offered their condolences. The baby that was growing inside me, completely unaware that we were all so devastated. It seems like a lifetime ago. Yet I remember it like it was yesterday.

If I only knew then what I know now, I wouldn’t have wasted so much time grieving. I should have been celebrating. Rejoicing in the blessing that was being bestowed upon us.

If I only knew…
We are good enough parents to “handle” this. We can do more than we ever expected (and do it well!).

If I only knew…
I would be fortunate enough to meet a whole group of new friends, some who have become like a sister to me (and reconnect with many old friends throughout this whole process!).

If I only knew…
My baby will be cute. Quite possibly cuter than typical babies. 😊

If I only knew…
I will find strength in myself that I never knew existed. But, that strength will never compare to the strength I see from my child.

If I only knew…
Cody will be ok – even through four hospital stays, a host of health issues, doctor visits, and therapy all for his brother. He still goes to bed each night telling me he loves me and that I am his best friend.

If I only knew…
Eli will do things at an “age appropriate” level. And when he does fall behind on occasion, it is not the end of the world. (By the way – He rolled over for the first time this past weekend. He sat unassisted for the first time today!!!).

If I only knew…
Dreaming about his future is ok. He will have a future.

If I only knew…
Super heroes are real. My son proves it.

If I only knew…
I will love this child with every fiber of my being. I love him just as much as his brother (I really was once afraid I wouldn’t love him as much!).

If I only knew…
I will eventually forgive myself for the feelings I once had.

I took a bunch of pictures at the beach. Some of Cody, some of Eli. When Cody’s shadow joined him in a picture, there was only one. (I am referencing an amazing picture I posted in ACCEPTANCE). That shadow joined him in the flesh this time. I am still certain that extra shadow was his brother.

One year later I can tell you life certainly is ok. It is more than ok! Through our challenges and subsequent triumphs we, as a family, have made it through stronger, tougher, and more appreciative. Life is different. It is actually better than I could have ever imagined.
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The One

April 30, 2012 was the last day of my former life. On May 1st we received a phone call telling us the baby I was carrying had a 1 in 3 chance of having Down syndrome. That meant out of 3 pregnant women with the same prenatal testing results as mine, 1 would have a baby with Down syndrome while the other 2 would not. I was stunned. I was confused. Angry. Scared. Sad. Devastated. Name a negative emotion and it is highly likely I felt that. I cried. A lot. We prayed every day that our baby would not have Down syndrome. That we wouldn’t be the 1.

As you all know, we were the 1. Our baby does have Down syndrome. 365 days ago I thought that meant I was the unlucky one. You know who is unlucky? Those other 2 women who don’t get to experience the overwhelming love I feel when looking into my son’s beautiful almond shaped eyes. Those 2 aren’t lucky enough to be a part of this oh so special club I’m a part of now. They didn’t get the opportunity to “meet” new friends and develop amazing bonds with people who share in a kinship like no other. The other 2 weren’t lucky enough to be shown the world from a totally new perspective. A kinder, gentler, more accepting, less judgmental way of life. The colors that surround my world are more vivid now. My eyes have been opened. I am the lucky one.

I am no longer sad, scared, or angry. Those feelings have been replaced with happy, hopeful, and joyful. This time last year, I was just going through the motions. Now I try to truly live and appreciate this life. My life. The one God has mapped out for me. For us. For my family. Sure, it hasn’t been all peaches and cream. Eli has not had an easy start. But his strength inspires me on a daily basis. I witness his perseverance. He amazes me. I have learned so much from him yet he is only 6 months old. I am so excited for the road ahead of us. Yes, it is the road less traveled – but I am one of the fortunate few who get to go on this journey. Yep, I am the lucky one. 20130502-010916.jpg

3-21 Happy World Down Syndrome Day!


3-21
Today is World Down Syndrome Day. Didn’t know that? Either did I until about 6 months ago. But now that I know it I want YOU to know it too! Obviously I am excited about WDSD. A day to celebrate people with Down syndrome? Yes! A day to learn more about Down syndrome? Absolutely! A day to look past stereotypes and see an individual? You bet! Do I wish every day was World Down Syndrome Day? Not necessarily. But I most definitely do wish that our kids and other people with Down syndrome would be celebrated on a daily basis.

While I was pregnant with Eli I spent a lot of time researching Down syndrome. A lot of the literature out there is old and outdated. There are a lot of statistics discussed. I read often about what people with Down syndrome can and cannot do. What they would or wouldn’t look like. What health challenges they may or may not have. I didn’t hear about the overwhelming love I would feel when I first laid eyes on my child. Or how my heart would explode when he first smiled at me. Or the giddy pride I felt the first time he held his head up. I never heard about the happy tears I would cry when my firstborn asked to hold his little brother. Or the fierce need to protect him that overcame me during his open heart surgery. I didn’t hear any of that until I sought out a different kind of support. I turned to people just like me. Groups of moms and dads who have a child with Down syndrome or were pregnant and expecting a child with Ds. Within one of those groups, the International Down Syndrome Coalition (IDSC), I found a network of parents and self advocates (older children and adults with Ds). A group that welcomed me with open arms within minutes of my introduction. Through the IDSC I saw how my child was going to be “more alike than different” yet still an individual. I saw pictures of beautiful children doing what children do. It helped take the fear away. A person with Down syndrome is a person. Down syndrome does not define them. Down syndrome does not define my son. Earlier this week I posted about who I think my son is. If you didn’t see that one check it out (Who I Am). I cannot tell you who he will be. That is for him to decide. He will have choices. He can play sports. He can attend classes with his peers. He can go to college. He can leave home. He can own his own business. Eli can, and will, do amazing things.

So today, World Down Syndrome Day, help me celebrate Eli and rejoice in who he is. Be proud of him. Be happy for us. Be loving to all. Be thankful for your blessings. Be patient with each other. Be kind. Be humble. Be an individual. Be YOURSELF.

In honor of all the babies, children, and adults who are rocking an extra chromosome, I ask you to watch the video at the top of this post. It’s an awesome song with an awesome message featuring some awesome people. Yep, it’s pretty awesome! If you like the video and love the message (which I know you will!) please share it with your friends. Help spread the word about 3-21 and change the stereotypes of what Down syndrome is (or isn’t!).

A special thanks goes to the IDSC and other groups like them that spread positivity and acceptance. Down syndrome is not a death sentence – all life is precious.

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Exciting news!

Exciting news! Eli’s pediatrician, the fabulous Dr. Rebecca Partridge, is starting a Down syndrome clinic for the Seattle/Eastside area. She has a son with Down syndrome and realized the need for a clinic in the area. She called me the other day to ask if she could use Eli’s picture for the brochure. He’s already a star! Of course I said yes. She’s chosen this picture because she said it’s “the most stunning picture she’s ever seen of a child with Down syndrome”.

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We are so flattered that she has chosen our precious boy to be the face of her project.

I find it ironic that one of my biggest concerns after we received the prenatal diagnosis was if Eli would be a cute baby like his big brother. Here he is in his second month of life and already he’s a highly sought after model – ok, maybe that’s a slight exaggeration by a ridiculously proud mama but honestly, I think his extra chromosome just makes him extra cute!

Better than OK

Sorry I haven’t posted on here since we came home. I’ve been enjoying my time with my precious sons. I will tell you this – I have no idea what I was ever afraid of! Our baby is a joy. He makes us laugh and smile. He is just like his big brother was when he was a baby except Eli eats better and actually seems stronger. He’s already lifting his head up! He’s such a rockstar. Cody wasn’t thrilled with his little brother at first but he’s coming around. Yesterday he asked to hold Eli! It was by far my proudest parenting moment to date. Amongst the picture taking I looked up at Chuck with tears in my eyes and the biggest smile on my face – if I’m not mistaken, Chuck had tears in his eyes too. We’ve been telling ourselves all along that it will all be ok. Guess what? It is better than ok. It is perfect!

I’m working on Eli’s birth story but it’s long and thoughtful so it’s taking awhile. I promise it’s coming though! In the meantime, please enjoy these pictures of our family. If only I knew 5 months ago this is what it’d be like…I would have never questioned a thing. Thank you God for blessing our family!

xoxo Melanie
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The beginning of our journey is coming to an end

As I sit here pondering what the future holds for my family, I find myself wanting to freeze time. I am scared. This has not been an easy road for me. I am hopeful but filled with doubt. I am accepting but anxious. I am excited but terrified. I need to remember exactly what I’m feeling today. For any day now, life as we know it will change. We will no longer be a family of three. We will grow by one. I will officially be a parent to a child with special needs. I have tried throughout this process to communicate my feelings so that I don’t keep them built up. If I didn’t have my husband and this blog I cannot imagine the emotional turmoil I’d have put myself through. I am so thankful to have these opportunities to express myself.

Now, the months have given way to days and the days have turned into hours – the waiting has begun. I have found myself reflecting on this journey that we started on five months ago. At times, it has been torturous – I won’t lie. Getting a prenatal diagnosis of Down syndrome for our unborn baby was a life altering event. We experienced emotions most people will never feel, and many can never imagine. I often prayed to God to wake me up from this nightmare. But today I have realized that what I once described as a nightmare is really becoming a dream.

We are lucky enough to meet our precious baby boy in roughly 88 hours (or less if these contractions don’t stop!). Our son. The baby we rejoiced and celebrated, then grieved and worried about – will look into our eyes, our hearts, and our souls and take our breath away. Many people do not get the opportunity to meet their babies after a prenatal diagnosis – sometimes by their choice, sometimes not. Meeting our baby will take the scariness out of this prenatal journey and leave us loving a baby – not worrying about his diagnosis.

Our baby was created out of love. God has seen fit to send us a child that will teach the world about love. I know that my story has already touched some people – many have told me so. I know it has certainly changed us. I can’t even begin to imagine what impact my son will have on our firstborn, our friends, our families, and complete strangers. I hope he’ll teach them what he’s already taught me. Tolerance, acceptance, non-judgement, and the power of true love. That is where this “nightmare” turned into a dream. I realized I still had dreams for my child. I had not given up on him – and I never will. I no longer grieve for what I had “lost” but now celebrate what I have gained!

I know the road we’ll travel will not always be easy – but most trips are not complete without a few detours. That’s the best part about journeys – going off route. Stopping for ice cream. Playing in the grass. Pulling over to pet a horse. The best moments are found in the unexpected. Maybe our life had gotten a little too expected. Maybe things were too easy. Maybe we had stopped going off path. Stopped appreciating all the little things that life has to offer. The miracle of our baby has changed all that. I want to appreciate every moment. I don’t want to take anything, or anyone, for granted. I want to embrace the challenges along with the triumphs. I want to live life. Thanks to this journey I have realized that.

There is a story that has often been recommended to me about being blessed with a child who has Down syndrome. It is a wonderful read that helped me change my perspective. I’d like to share that with you.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Although I don’t agree with every statement in this story (that the pain will never, ever, ever, ever go away) I am aware enough to understand she is speaking about her experience and that I am living mine. I was lucky enough to get the new “itinerary” for our life’s journey five months ago. I will board the plane knowing it’s going to Holland. I will not be surprised when we get there. Instead, I’ll take the time to stop and smell the tulips. 🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷

Ten days!

Ten days. In ten days we will meet our baby boy. Wow. I can’t even explain the emotional state I am in. I feel excited, nervous, anxious, ready, not ready. Basically every emotion I’ve ever felt in my lifetime has resurfaced in the last 24 hours. My insecurities are coming out in full force again. Can I do this? Will I be a good mom to a child with special needs? Will we have the support we’ve been promised by friends and family? Will Eli’s arrival make Cody sad? Ahhhhh – that’s a lot of negativeness. I don’t mean for it to come across that way. I’ve just been filled with so much worry again lately. Although, the other day I saw a sign (on yet another country church) that said, “Worrying is worthless” – Ok, I get it. I guess I should listen to Him (since I’m assuming He’s in direct control of all the country church signs that we drive past! 😉) and stop worrying!

The days have been filled with some positivity too! Cody picked out his “welcome to the world” toys to give to Eli (a stuffed football and a security blankie/stuffed dog thing we call an ‘ahgoo’ in our house) and we picked out the “I’m excited to be your little brother” toy that Eli will give to Cody (a large stuffed Spider-Man, Cody’s newest character that he loves – although the only thing he’s ever seen of Spider-Man is a pair of pajamas he has!). We finished Eli’s room. Our hospital bags are packed (just in case!). We’ve spent quality time together as a family of three. It was a good, productive weekend!

I’m anxious for Cody to meet his little brother. I know he’ll feel jealous but I think part of him is excited too. Although, I’m not sure what, if anything, he expects will come out of Mama’s belly (he knows that’s where “Eli” is). I’m especially worried about not being able to pick Cody up after the c-section. We love to cuddle and he likes for me to hold him. Hopefully I’ll be able to rest and relax a lot so he can spend time cuddling with me in the bed or on the couch. Ha! Relax with a newborn! I guess I may be a bit delusional. But, rest will definitely need to be in my future. I learned after Cody was born – A happy mama equals a happy baby!

In ten short days I’ll be meeting the little man that has already changed my life for the better. I’ve met great people, opened my mind and my heart, and accepted all God’s gifts. Such a blessing! I cannot believe this part of our journey is coming to an end. Eli has changed so much in our lives. Our perspective is different. We are more accepting. I care more. I love deeper. Soon, my littlest boy will teach me more than I can ever teach him – in fact, I think he already has.

Believing

I lay here in a dark bedroom, one dog lightly snoring next to me in the warm spot my husband just left. He is now on his way to work. Something he does 5, sometimes 6, days a week, without complaint, to solely support our growing family. My old dog is pacing back and forth at the foot of the bed. He wants to get up here. He wants me to pick him up to do that. He doesn’t care that I’m too tired and pregnant to pick up his 14 year old, 45 pound body. Last night Cody woke up at 3am, and then again at 4am. As I sat there rocking him I reflected on the times I did that with him when he was a baby and then started thinking about our upcoming nights where I’ll be doing that with Eli. I spent a lot of time in that rocking chair when Cody was little. He still loves to be rocked (hence why the rocker is still in his room and not in Eli’s). It’s a ritual we do every night before bed. We read books, sing ‘You Are My Sunshine’, say our prayers, and rock. Many nights recently I have noticed my tears have wet the top of his head. I can’t help but feel a twinge of sadness. Apprehensive of
what the future for us holds. I cherish our time together, just the two of us. My little boy has taught me so much in the past two years. He taught me how to be what I am most proud of, a mommy. Yesterday, while on the way home from the grocery store, I said, “I love you Cody” to which he replied “I love you too Mama”. That was the first time he has said that so clearly. It’s usually more like, “I too Mama”. Hearing him say that melted my heart. I am excited to see how Eli changes the dynamics of our family – but it is also what terrifies me most. I’m hoping to feel a sense of completeness. I’m hoping it all ends up how it is meant to be. How God intended. It’s taken me awhile but I fully believe in His plan.

I recently read a post on a baby board about a woman who terminated her baby when she found out it had Down syndrome. Afterward, she was filled with regret and despair. Her and her husband got pregnant again and she started to feel hopeful once more. Then, at 24 weeks, her baby was prematurely born. He’s now a child with special needs. His needs are worse than those children she’s met with Down syndrome. It’s interesting how life works out. What I took from that story was that God fully intended for her to be the mother to a child with special needs. She could try and change that path but God was determined. He must’ve seen in her that which she could not. She still had regret about her previous decision, hence her post on this particular baby board. She was telling her story to ask other mommies to fully consider their decision, the emotional consequences, and what path their lives were supposed to take.

As the days fade into night and I rock my son before bed, I spend that time being thankful for our blessings. Thankful for the future. Thankful for this path that God has chosen for our family. Thankful to once again believe. Believe in the future, believe in our family, believe in myself, and believe in Him.

Ultrasound today

Thank you for all the love and support shown to me last week. I had a rough week but so many people reached out with kind words and concern that I didn’t feel so alone. I have been feeling a lot better and am once again in a good and positive place. BUT, today we have another ultrasound. I have been somewhat dreading this ultrasound for quite some time. Besides heart defects, another common birth defect found in babies with Down syndrome is something called duodenal atresia. Here is the definition according to About.com:

Duodenal atresia is a birth defect of the digestive or gastrointestinal (GI) system that occurs more frequently in infants with Down syndrome. Somewhere between 5% and 7% of infants with Down syndrome will be born with duodenal atresia, as compared to only 1 in 10,000 infants who do not have Down syndrome.

What Exactly Is Duodenal Atresia?

Duodenal atresia is a condition in which part of the small bowel (the duodenum) does not form properly. The duodenum is a small tube-like structure that lets digested material from the stomach pass into the small bowel. Occasionally, the duodenum does not form correctly and is either closed (duodenal atresia) or much smaller than normal (duodenal stenosis).

This defect is usually found after 24 weeks. I had an ultrasound at 26 weeks and everything looked “fine” but I’ve learned not to celebrate until we are absolutely certain. Today we will know for sure whether our little guy has a “double bubble” (a phrase used to refer to duodenal atresia) or not. We have become accustomed to expecting the worst so then we are not left feeling so blindsided. The reason this defect scares me so much is that this is something that will require surgery immediately after birth. I just want to see and hold my baby when he’s born. That’s truly all I want. I know he may be sick. I know he may look different. But I just want to snuggle Eli and tell him I’m his mommy and that I will love him forever, just like I did with Cody.

I hope and pray that we leave Dr. Case’s office today with smiles on our faces and relief in our hearts. All prayers are requested and appreciated! I’ll update this evening.
Much love always. xoxo