The upside of "down"

"We think your baby may have Down Syndrome."

Down. Syndrome. DOWN SYNDROME.

Those words echoed throughout my brain, searching for a place to rest that would somehow make me feel like they belonged there. Tears at this point fall uncontrollably and my whole body had begun to shake, the place in my heart that had been so full of excitement and anticipation and happiness felt like that doctor had just reached over and burst a balloon inside of me.

It's a dream... This is all just a bad dream.

I'm only 22 years old, this doesn't happen to healthy, young moms like me.

They're looking at the wrong baby, they've got the wrong one and it's just a mix up.

It's definitely just a dream, pretty soon I will wake up and Robbie and I will laugh at yet another one of those crazy, hormonal pregnancy dreams.

Only it isn't.

My heart ached.

I just longed for some sense of normalcy.

But then there's this beautiful, tiny human inside of this plastic box ready to be whisked away in an ambulance to be admitted into the NICU, who just hours ago was safely nestled inside of me, soothed to the sound of my heartbeat looking into my eyes and it's as if he's saying "Please love me. I know I'm not what you had expected, but love me anyways." and in that very moment it's as though my heart could burst..That this wasn't a BAD dream, it was just a different one. God showered me with this sense of peace and for once since those eight words were spoken to me, I felt like it was all going to be okay. 

 

 Those eight simple words completely changed me and the life I thought I had planned out. 

A total detour.

It's the funniest thing though, really.. We make these plans and we imagine our future selves living out these "perfect" lives, all the while God just smiles and nods knowing fully that He has something totally different in mind. Something FAR more beautiful than you or I could imagine. Different, yes, but it's the story He crafted just for you and it's scary, exciting, and profoundly wonderful all at the same time.

Different scenery, maybe, but still a beautiful journey and mine has only just begun.

On with the story, Emmett Slade Fox was born at 11:32 PM on July 22nd and by 12 AM we were told that he was having breathing difficulties, a heart issue, and the possibility of Down Syndrome.

At only 13 hours old he was admitted into the NICU due to the breathing and heart complications and the possibility of sepsis.

I cried, I fought with God, and I fought with myself. I just didn't understand why? I mean what did Emmett do to deserve all of this? Was it something that I did during my pregnancy.. did I drink too much coffee? Was it the time I forgot to take my prenatals? Did I not pray enough over my pregnancy? I just didn't get it.. (and YES, I know all of that sounds totally insane.. but, I like MOST people out there had absolutely NO IDEA what Down Syndrome really was..) I kept picturing in my mind that his life was already over before it all even began... and honestly five months later I know that nothing could be farther from the truth.

As I watched the ambulance carrying my sweet baby from the hospital that I was still stuck at, I couldn't help but be so angry and sad and overwhelmed. I stopped my OB in the hallway and he gave me a huge hug and said he was SO sorry, that he and his radiology tech had looked back through all of the ultrasound pictures and that they still didn't see it... the Down Syndrome.. but, mainly that he was sorry. I couldn't help but just cry even harder.


Literally, for the first two weeks even the sound of those words made my heart feel as heavy as an anchor and my stomach flip. I couldn’t even bring myself to do any proper research about what Down Syndrome really was without huge tears welling up in my eyes. Looking back, I guess I just wasn't prepared to accept the diagnosis.. I had this little shred of hope that they were wrong and I would just wait for the lab tests to prove that. It makes my heart even more sad that people found it necessary to apologize for this diagnosis.. there's no reason to be sorry, I am not sorry that all of this has happened. Shocked, yes... Sorry, no. It's just a new journey to be embraced.

I was discharged just a few hours after Emmett and was able to make the short journey to the Children's and Women hospital and be reunited with my sweet boy. The whole way there and the last 16 hours literally felt like a blur and honestly they felt like a dream. Even at this point in our journey, I still felt like all of it didn't feel real. The whole way to the hospital I prayed.. SO, SO hard.. I prayed that God would heal my Emmett, that I KNEW God was the Ultimate Physican and I knew that everything was within His power and that He COULD heal him.. I prayed that everything would be okay with his heart and his breathing would improve.. and admittedly I prayed that by His divine power that God would heal his chromosomes.. that the doctors were wrong and I was right. That they were crazy, not me.

I honestly feel guilty about those feelings.. I feel awful that I felt like I had to pray this diagnosis away... because it isn't a flaw or mistake on God's part or anything that you should feel like needs to be "fixed." Emmett isn't broken.... God handcrafted each cell in Emmett's body and he is perfect.

And looking back now, I hate that I spent hours staring at my baby (while waiting for the lab results to come back) looking for characteristics associated with Down Syndrome. Instead of  FULLY embracing this new miracle of life that God has entrusted me with.

We spent the next two weeks of Emmett's life at Children's and Women.. I learned so much within those hospital walls. The NICU was like nothing I've ever seen, it's so full of new life.. yet, such a sad place. You definitely don’t leave as the same person that you walked in as. You earn a whole new appreciation for life, because you see so many babies that were welcomed to the world only to be hooked up to all of these monitors and poked and prodded and are fighting SO hard just to live and you never in a million years imagined that yours would be one of those tiny humans nestled away there.

Upon arriving, we were finally able to actually hold our sweet Emmett for the very first time. I cannot even explain in words the feeling that rushed over me as I stared into the face of Gods beautiful handiwork. I wanted to hold him and just never let him go.  Maybe this sounds silly, but I didn’t want him to have this false sense of what his world was like.. I didn’t want him to think that his life consisted of constant IV sticks and feeding tubes and nurses messing with him constantly. I didn’t want him to think that this is what life was going to be like for him. I just wanted to hold him and comfort him. I told him that everything was going to be okay and I prayed over him as I rocked him. This became a routine for me, I would rock and pray for him every day as I admired his beautiful face. 

The doctors and nurses there were amazing. I have to say that in the midst of something so hard, they were a light. I know that God lead them to that path because it takes some very unique men and women to be able to do what they do. They treated my sweet Emmett like he was their very own. I had no doubt that in the moments that we weren’t allowed to be with him, that he was in the best possible hands. They were also very helpful and I know that I probably drove them crazy with my ten million and one questions, but each one of them was so patient and understanding and would explain everything to me so thoroughly (even if it was the second or third time I had asked the same thing..) They never seemed annoyed or impatient with me. I am truly thankful to each and every one that had a hand in caring for Emmett. (I know that none of you will probably ever read this, but just in case.. please know that I prayed for you and still do. You were a light and blessing to me and I will forever be grateful to you. Thank you so much for everything.) 

After about five days there, one of the nurses asked me if I wanted to try breastfeeding him and of course I did. So, she set a meeting up with the lactation consultant Amy and she was nothing short of a blessing in our journey, also. Even though I was already a mother, I still felt totally new to all of this and she helped me in every step of our breastfeeding journey. I knew that with him having Down Syndrome that a lot of times breastfeeding attempts may be unsuccessful, but we were patient and I refused to give up and we did it (and still are successfully breastfeeding five months later! Take that, statistics!) You have to realize that even though some person or study out there may say you won’t be successful at something, that if you truly want to do something.. go for it! Breastfeeding was something that I was passionate about and truly wanted to do, so despite what anyone said we did.

In the time spent out of the NICU (we were literally in there as much as they would let us be) Robbie would read a lot about Down Syndrome and we would talk about it trying to mentally prepare ourselves for whatever the doctors had to tell us because at this point we were still waiting on lab results to confirm. We talked about how regardless of what they had to say that it didn’t matter. He is OURS and he is perfect. Yes, life would be different… but, we promised each other that we would always work as a team and stay strong throughout this journey together. That we would show Emmett love because in life that is all anyone wants is to feel loved. I tried to read about Down Syndrome, I honestly did. I would sit while pumping milk and start google searching things, but I couldn’t bring myself to read it. I still didn’t want to believe it. I told myself that I was ready to accept whatever diagnosis came our way. 

A few days passed by and I saw our doctor approaching to talk with us and I knew. I just knew what he was about to say. I just don’t think I was ready to hear it.

“His genetic testing showed that he does have Trisomy 21.”

I felt the lump in my throat and tried so hard to fight the feelings. Tears welled up and while holding my Emmett I felt the hot tears staining my face. I wasn’t crying because I was sad that he had Down Syndrome. I was crying because I wanted to be able to protect him from this cruel world. I didn’t want to hear the names that people sometimes call children with disabilities, I didn’t want people to feel sorry for him, I didn’t want people to stare or to look at him differently.

I guess in a way I was mourning the hope of his test results coming back as “normal.”  I just want people to see Emmett for Emmett and not just “the baby with Down Syndrome.” I want people to know that he is still so very unique and an individual. I don’t want people to define him based solely on a diagnosis. He is still just as much an individual as any other baby. The genetic testing showed  three copies of the 21^st chromosome, but what it didn’t show was that he has the most beautiful blue eyes..much like the pair of his daddy and brother that I am so in love with.. that he has the same dimples when he smiles that my dad has.. that he would have the sweetest little laugh in the world.. that he very much resembles his brother when he was a baby.. that he loves music like his momma.. or that his sweet smile looks very much like mine.

That genetic test only revealed one tiny detail about my Emmett. It doesn’t DEFINE him or who he is. When someone is diagnosed with something, they don’t BECOME that.. it is just a little piece of them and a part of their story.

We got some books and brochures and spoke with a genetic doctor about Down Syndrome and what this meant for our lives. And honestly, it’s just a journey just like every parent takes when they first become parents. You have no idea what to expect and it’s all new and you just take life as it comes. We’ve learned so much about Down Syndrome, but even in just reading everything it isn’t a study guide for what Emmett’s life will be like. Only Emmett knows his fullest potential and only he can and will show us what he is capable of and only he can unlock his fullest potential. No book or article will tell you what your child will be like. You just enjoy each day and you nurture and love and guide them through each step. That’s our job as parents, regardless of whether they have Down Syndrome or not.  

Robbie wanted to able to share his thoughts on this journey also, so I’ve included a little piece that he wrote.. “The night Emmett came into our lives was the best night of my life. Don't get me wrong it was one of the worst nights of my life as well. But, only because I didn't know any better or as much as I do now. The moment that the doctor came back into the room and told us that our precious newborn baby boy had Trisomy 21 aka Down Syndrome quite frankly I was pissed. Why? Because I was scared. All my life I had never dreamed of this moment right here right now. I could have killed the doctor that told us the news. And looking back now I hate that I felt that way. You see it's no different...for I have never been a Dad before just like Emmett has never been alive before. And just like Emmett knew nothing about life I knew nothing about being a father. So whether or not Emmett has Down Syndrome or he didn't have Down Syndrome I am still been his dad either way nothing would have changed that and we would have still taken this life journey together because that's what God had planned. I'm not scared anymore because I know now that there is nothing to be scared of...it's just an extra chromosome. And I thank God everyday that he gave me such an amazing son."

 Fast forward to today, Emmett is currently FIVE months old and very healthy! In regards to his heart issues, he was born with a VSD (Ventricular Septal Defect) and it just means he has a small hole in his heart. It’s actually a very common defect and generally requires no medical intervention. Emmett also has one other area of his heart that they are keeping a close eye on for now, so we just see his cardiologist every few months to be sure that his heart is progressing as it is supposed to. He also has a developmental pediatrician that he sees and she just watches his progression in regards to meeting milestones and growth. He attends Physical Therapy once a week and has a Physical Therapist who comes to our home once a month, as well. They just work with him to help ensure he stays on target with meeting his milestones. Typically, babies with Down Syndrome have decreased muscle tone, so it can be a little harder for them to do things like hold their neck up or roll over etc. So, right now those are things that we are working on. Emmett actually really enjoys his time at physical therapy. I think he just likes to show off how awesome he is! ;) He is very vocal and loves to be talked to and when he is sleepy (which he fights majorly) he will talk up a storm to help keep him from falling asleep… he gets his stubbornness from daddy. ;)  He loves music and spending time with his big brother Austin. He also really enjoys taking baths. His favorite toys are ones that play music to him and light up. We are so very blessed that Emmett is a happy and healthy baby! We honestly feel honored to get to be his parents. He is truly amazing and continues to amaze me every single day. God is so good and I thank him daily for giving me two very special boys and allowing me to be their mother!

To the mother who just found out her baby may have Down Syndrome, I have prayed for you and am praying for you because I have been in your shoes and I know it's not always an easy journey. If I can tell you one thing it's this, it's okay to feel those feelings and it's okay to not understand and I know you feel alone, but I promise you that you aren't. God will guide you throughout every step of this journey. Lean on Him. Pray. But, most importantly EMBRACE your new miracle. I know you may not think so now, but the time does fly and one day you'll wonder where those newborn days wondered off to! I am here for you, please reach out to me if you need absolutely anything! 

I wrote this blog  not only to share a piece of Emmett’s story.. but, to help spread awareness about Down Syndrome and to help show other people that it isn’t a BAD thing.. that there is absolutely no reason to feel sorry for children with special needs. There is nothing sorry about it! They are beautiful children of God, just like every child. I want people to know that it not something to be afraid of, but  rather to embrace. I also wanted to showcase a web page I recently ran across that absolutely shattered my heart, it's an adoption page for children with special needs. I wish I could take every single one. Please check it out and be praying for these beautiful babies!! (I've listed the webpage below!)  Since I have chosen to use this as a place to help spread awareness and education about Down Syndrome, I’ve listed some facts below this post! 

Please feel free to reach out to me with any questions or comments and I will do my best to answer.

  (sidenote: I apologize if this post is all over the place, I’ve written it over the course of three months so it may be a little scattered and seem very jumbled!) 

Down Syndrome Facts:

-What is Down Syndrome?

Trisomy 21, or Down Syndrome, is a genetic disorder which is caused by a full or partial third copy of the 21^st chromosome.  There are three types of Down Syndrome. Trisomy 21, or nondisjunction, is the most common kind, seen in 95% of Down Syndrome cases. The extra chromosome is present in every cell in the body. Translocation Down Syndrome occurs in about 4% of Down Syndrome cases and is caused by a partial copy of the 21^st chromosome breaking off and attaching to another chromosome (usually the 14^th chromosome.) Finally, Mosaic Down Syndrome happens when the nondisjunction of an extra chromosome is present in some, but not all, of the body’s cells. Some cells will have 47 chromosomes, while the rest will have the typical 46 chromosomes.

-Is Down Syndrome rare?

Down Syndrome is the most commonly occurring genetic disorder or birth defect. 1 out of every 691 babie born in the US have Down Syndrome, and there are over 400,000 people who have Down Syndrome in the US.

-What are the effects of having Down Syndrome?

People with Down Syndrome usually have hypotonia, or low muscle tone, and developmental delays. Early intervention programs and therapies are able to help children, albeit at a slightly longer pace. The rate at which the person with Down Syndrome reaches these milestones, as well as the developmental delays he or she has, will be highly individual. There are usually cognitive delays as well, ranging from mild to moderate. It is important to remember, though, that each person with Down Syndrome is different, just like unaffected people. 

-What does the future hold for people with Down Syndrome?

People with Down Syndrome are people first. They may have some of the characteristics generally associated with this condition, but they are overwhelming unique and must be treated as individuals. People with Down Syndrome regularly participate in community activities: school, jobs, church, and leisure activities. Some live with family, friends, or independently. They form interpersonal relationships and some marry. The opportunities available to those with Down Syndrome today have never been greater. 

These are all generalized facts I have found on the internet.. However, I can say from personal reference.. That extra chromosome makes for some extra cute babies! And it IS a fact that Emmett Slade will steal your heart... don't say I didn't warn ya! ;) 

For more facts and info visit: www.ndss.org 

Adoption/fundraising for adoption of  special needs children (and especially prayers) : www.reecesrainbow.org 

Thank you all so much for the love and support!