They Were SO Right!

As we slowly started telling people that our unborn son was going to have Down syndrome many had suggestions of other families we could connect with who had a child with Down syndrome. We were not close to anyone who was raising a child with Down syndrome, so it was helpful to be linked to families that were already on this journey. One couple that kept com10699753_10152929303123938_4026044436678668462_oing up as a “you must connect with” was Skip and Gayle Gianopulos. They not only had one child with Down syndrome, but they had TWO biological daughters with Down syndrome. Feeling very scared and overwhelmed about Cody’s diagnosis, I couldn’t even imagine what that was like!

Gayle is a fellow alum of Judson University and I had heard her name before, but I had never met her because we were not in school at the same time. What I did find about her was that she was “normal, cool and fun”. That sounds trivial that I cared about that, but I am embarrassed to say, that one of my concerns when I found out that Cody was going to have Down syndrome was that I would have to give up my life as I knew it. I thought he was going to ruin my life and I would have to change who I was and what I liked to do. From gayle 5what I knew about Gayle, she was a happy, beautiful person inside and out, living life to the fullest. I wanted to know her secret on how she managed this kind of life while raising children with Down syndrome.

I reached out to Gayle and she immediately offered for her and Skip to meet with Chad and I. The pain and uneasiness still very fresh, we met Skip and Gayle for dinner just weeks after Cody’s diagnosis. They were so kind and friendly and very easy to connect with. There were no signs of a burdened life or unhappiness with having children with Down syndrome.

That night was just the first step of learning from other families about life with a child with Down syndrome, but as I think back to that dinner conversation there were some key things that Skip and Gayle shared with us that night.

They promised us that our Cody would change our world in beautiful ways.

They told us that once we grieved the loss of what we expected, we would open ourselves up to see the beauty in the gift of life that was given to us.

They said that managing four kids is the hardest part of their parenting, not having children with Down syndrome, and most of the time, those girls are their easiest kids!

They admitted that if God gave them the chance to take away their daughters’ Down syndrome they would not want to. It would take away what makes them who they are.

Skip and Gayle’s mentorship has been such a blessing and vital part of our journey. They are such caring and giving people and we are so grateful to know them. They did not take our fears away that night, but they calmed them, and as we have navigatgayle and nancy 1ed through the first 23 months of Cody’s life it was slowly revealed that what they told us was very true.

Cody has changed our world in such beautiful ways and we love having him as our son. I look back to the moments we were so sad and scared and wish we would have known how great life was going to be with Cody. But we needed to grieve and process and once we had the chance to actually experience life with Cody we did realize the beauty of the life we had been given.

And I too wouldn’t want Cody’s Down syndrome taken away! I can’t believe I actually feel that way, I would never have thought I would. Sure, I sometimes wish things were not so hard for Cody, but I also cannot imagine him not having Down syndrome. He has a joy and an extra zeal for life that is so unique to Down syndrome and I would be sad for that to be taken away.gayle and nancy 3

Skip and Gayle met with two very scared parents that first night and a few more meetings after that. They sifted through our panic and patiently answered our burning questions and concerns. They showed us such grace and concern but secretly they knew we were going to be ok. They knew the blessing that Cody was going to be before we did. They knew we would come around and realize the amazing gift that Cody is. And they were SO right.

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Dear Doctor

July 6, 2017

Dear Doctor,

Two years ago, on this very day, you gave me some news that changed my life. You told me that my unborn son would be born with Down syndrome. This must have been very hard for you. I don’t know if this was the first time you had ever had to do this or if you had done it before, but what I do know is that it could not have been easy for you. You held the responsibility of crushing my dream of what I imagined my child would be. You were giving me news that would ruin the rest of my pregnancy. I wouldn’t have wanted to be in your shoes.

You delivered the news to me the best you knew how. You said you were sorry many times. And you quickly rushed to help me with my options. Options that I took very seriously. I was traumatized and your solutions were very enticing. I did not like the news you were telling me and if I could get out of the situation I was willing to listen. I knew nothing about Down syndrome and I looked to you for guidance. You told me everything you knew about Down syndrome and it sounded very bleak. You told me about all the things that my son Cody would NOT be able to do and all the possible problems he may endure. It sounded horrible and I thought that maybe your suggestion of terminating my pregnancy or giving up Cody for adoption would make my life and his much better.

I am writing you this letter because you deserve to know the outcome of my story. I want you to know that your role as the deliverer of a Down syndrome diagnosis to future mothers may look a lot different when you hear my story about Down syndrome.

Yes, I needed to know the hard stuff about Down syndrome, that is your job, but I wish you would have started with the positives because there are so many! Despite Cody’s Down syndrome diagnosis I have a very capable, happy, adorable little boy who is so easy to love. I absolutely love being his mom. I cannot imagine my life without him. It’s different and not what I expected, but it is not bad, it is not scary and it is definitely not something to be sorry about. Terminating a pregnancy just because of a Down syndrome diagnosis should not even be a consideration. People with Down syndrome can achieve so much and contribute great things to our world. Cody is so much fun with an energy we can barely contain. He is full of smiles, has big blue eyes that melt your heart and his contagious giggles make him a constant joy to be with. He fits in perfectly with our family and is always right in the middle of the fun with his big brother and sister. His Down syndrome diagnosis does not define him, and honestly we forget about it most of the time.

I have met a lot of parents of children with Down syndrome since I received my diagnosis and none of them are unhappy or miserable being a parent of their child. Women that receive a Down syndrome diagnosis need to know this! Sure, some days are hard and frustrating and the extra time needed to accomplish milestones can be challenging, but my other kids are also hard and cause me frustration, just in other ways. Cody has not decreased my quality of life at all! In fact he has given me new purpose and I have grown so much as a person since he has entered my world. I am more patient, less critical, I hand out grace more freely and I have learned about inclusion and acceptance of all people.

This growth has led me to being a part of starting an inclusive program for students with intellectual disabilities at the college where I work. Yes, people with Down syndrome can go to college! This fall 12 students with various intellectual disabilities including Down syndrome will come to Judson University in Elgin and live in the dorms, eat in the cafeteria, go to classes, participate in co-curricular activities and gain work experience through both an on-campus job and an off-campus internship. These students will be prepared for independent living and pursue competitive employment at the completion of the program.

The world is such a better place for people with Down syndrome thanks to so many who have seen the value and significance that these wonderful human beings have despite the stereotypes and false perceptions. I feel honored that I am a part of moving society forward in inclusion and acceptance.

Approximately one in every 700 babies born in the United States is born with Down syndrome, so there is a good chance you may have to give a Down syndrome diagnosis again. If you do, please don’t tell them you’re sorry. Do not start with the negatives. Communicate to them that it will be a different road than expected but that it is not a bad one. Educate them about the many therapies and services ready to help their child achieve. Tell them that people with Down syndrome are included in mainstream school and can even go to college and hold meaningful jobs. Make sure they know that most parents enjoy having a child with Down syndrome and instead of giving them the phone number to an abortion clinic, give them the phone numbers of some local moms that have children with Down syndrome so they can seek advice and reassurance from them.

My hope is that my story has inspired you to learn more about Down syndrome and that you will deliver the news of any future diagnosises with encouragement and hope. Reinforcing to these parents that, despite their fears and probable challenges, they need to be brave. Brave to have faith and embrace this different and wonderful gift that they will soon be so thankful for. And please, don’t feel sorry for them, they just hit the jackpot.

Sincerely,

Nancy Binger, proud and happy mom of Cody

 

 

Reaching Milestones

Cody is finally on the move. He’s bear crawling, pulling himself up onto things and moving all over the house. Common with Down syndrome, Cody hits his milestones much later than a child without the extra chromosome. While other people’s children that were born at the same time as Cody are quickly sitting up, crawling, walking, feeding themselves and starting to say words, Cody is quite a ways behind. This is not unexpected. You know that this is a part of having a child with Down syndrome.

At each of Cody’s wellness visits at the doctor I am reminded of these delays the most when I fill out the development survey. The answer is no to all the typical expected milestones. No he doesn’t do that. No he can’t do that. Nope not that either. As I sit in the waiting room filling out this form, it is obvious that all the other kids similar in size to Cody are doing so much than he can. It can be a little defeating. Jealousy and a lack of patience fills my heart as I see other kids moving along faster than my little Cody.

When researching Down syndrome I read and was told by other parents that when your child reaches each of their milestones it is so exciting. They all stressed the word exciting emphatically. It’s even a whole different level of excitement compared to your typically developing children accomplishing their milestones they said. I remember when each of my twins started smiling, sitting, walking, talking, it was very fun to watch them change and excel. Their growth happened so fast. They zoomed through each phase. So much that the first 18 months is quite a blur. I was curious on how different watching Cody’s growth would be. Would the delays be frustrating or would it be as exciting as these parents say?

With a Down syndrome diagnosis the focus is always on what this child will not do and there is a lot of focus on the negative. It’s a good thing that other parents gave me this optimistic perspective because they were so right. Watching Cody reach a milestone is a whole different level of excitement. It’s a celebration of pure exhilaration that the whole family participates in. There is cheering and jumping around and shouting and rejoicing.

When you are forced to be patient and wait as you watch this little child work so hard at something, you cannot help but be overjoyed when they actually figure it out. Time is all they need, just a little extra time. And as a parent it gives you the time to savor each phase. And just when you wonder if they will ever accomplish a certain milestone, just like that, they do. Just like a typical child, just a little slower. And once you see a few milestones reached, you even stop keeping track of how behind they are. You know it is going to happen and you enjoy the ride. And the slower ride is actually kind of nice because we all know our children grow up way too fast.

 

Stay in the Present

After receiving the news while pregnant that Cody had Down syndrome, the best advice I received was to not fast forward into the future too much. It was ok to go there, but I was encouraged to quickly get back to the present. That was especially good advice to hear during that traumatic time as I battled so much fear of the unknown. I had no idea what to expect raising a son with Down syndrome and it was very easy for me to craft a future in my mind full of all my fears and uncertainty. I would speculate and assume my upcoming years would be full of gloom and negativity and worry and unhappiness. I created this image of a life dragged down by having a child with Down syndrome.

I know now that this is not the future I will experience and I would have lost so much time surrounded by this false worry if I wouldn’t have taken the advice to stay focused on the present. Spending time worrying about the future is a waste of time. You can’t control it, you can’t predict it and it usually doesn’t end up as bad as where your mind takes you. I have to constantly remind myself of this.

Cody’s heart surgery at 4 ½ months old fixed the majority of the issues with the holes in his heart, but he still has a leaky valve. Cody sees his cardiologist once a month to make sure evcody5erything looks ok. He is also on medication that he takes three times a day. For 29 days of each month I don’t even think about Cody’s health problems, but once a month I have the brutal reminder that his body is not functioning as well as we would like. My time at the cardiologist is always full of questions. Most are questions that the doctor doesn’t know the answer to. Is he going to need another surgery? How will these issues affect his growth? Will he not be able to do any physical activities because of his heart condition? And he too tells me to not get ahead of myself. Stay in the present. If we have to take any other action we will deal with that when it comes. For now, he is fine, enjoy him. Don’t miss out on how great he is doing now by drowning in the unknown.

Although I feel a lot less worried about having a child with Down syndrome then I did in the early days of Cody’s diagnosis, there are still so many questions and there always will be. How old will he be when he walks? How well will he talk? What will his schooling look like? Will he ever be able to live on his own? Will he have any more health issues? These are all good questions, but why dwell on them now when the answers are not there?

Too often we stress about a future that we cannot control or predict. I am striving to focus on the present. The present is raising a little boy that is full of life, full of happiness and so motivated to learn and grow. What he can and cannot do in the future doesn’t matter. It is what he is doing today that brings me joy and happiness that I must embrace and relish. I don’t want to miss the wonderful moments with my happy baby who is full of smiles and energy. Let’s worry less about tomorrow and find reasons to enjoy today. Fixating on an unknown future will rob us of the joy that the present is offering us.

 

 

 

 

 

Ready to RISE

I have worked at Judson University for 15 years and am also an alum of the college. I am currently the Vice President for Enrollment and Strategic Planning. Building my career at Judson has been one of the most rewarding callings I could ever imagine. I am so proud of my college and the work that is done on our campus. Lives are shaped, the person as a whole is cared for and students are transformed and thoroughly prepared for their adult life in today’s world. I am amazed by the success stories I witness and the opportunities that our students experience while at Judson.1280_profile

I crave for more people to know about this wonderful school.

During my entire time working at Judson, but especially as of late, I have passionately prayed that more people would hear about Judson and that more of the world would know about this brilliant little school so beautifully located on the Fox River in Elgin, Illinois. Every Christian college has similar programs, many have small-class sizes and a great caring faculty, but how can we show Judson is different? The longing to find the way to express this distinctive challenged me and roused my soul.

And although I love working at Judson and am proud to be a part of the university’s staff, I was struggling with the feeling that there is something more out there for me. I desired to make a bigger impact in my community and beyond. I wanted a cause to fight for, a platform, I wanted to stretch myself. Something was stirring in me and I tried to figure out what I was supposed to do. I even ventured to explore options outside of Judson. But I was constantly drawn back to being content at Judson and I couldn’t exactly understand why.

Then, slightly over a year ago, I was 22 weeks pregnant with my third child and I received a shocking diagnosis that my son Cody was going to have Down syndrome. This was really hard news for me to hear. I did not want to be a mom of a child with special needs and I definitely did not feel prepared to handle this role. I thought my life was over as I knew it and I didn’t know what to do. I was so grateful that I was introduced to fellow alum and mom of two children with Down syndrome Gayle Gianopulos. She was such an encouragement to me as I navigated through the early days of grief and confusion after finding out about Cody’s diagnosis. With her help I was able to come to the realization that I was ready to be Cody’s brave mama.IMG_1866

Cody was born last October and he is a joy in our life. We quickly learned that he is not defined by Down syndrome and that he is more of a typical child than not. We are excited to watch him grow and achieve just like our other two children.

Shortly after Cody’s birth, as my friendship with Gayle continued to grow, she shared her idea of Judson starting an inclusive college program for students with intellectual disabilities. I first thought this was just a random idea she had, but as she continued to pull out all kinds of research and documents and website links to look at, I knew this was more than just a random idea. I went home that night and read all the documents and searched out the websites and it hit me like a ton of bricks.

This was it. THIS WAS IT!!!!!!

This is the program that I believe will introduce Judson to a wider scope of people. It’s the program that will show the world that Judson University is a very special place, willing to stretch itself and give opportunities to anybody determined to shape the world.

I knew without a doubt that Judson needed to start this program and it’s been full-speed ahead ever since. After months collaborating and planning with Gayle, I am now so excited to scream from the rooftops that Judson University has announced that it will begin the RISE program (Road to Independent Living, Spiritual Formation and Employment Opportunities), a post-secondary certificate of completion program for students with intellectual disabilities, with students beginning in the Fall of 2017. The two-year program will provide students ages 18-25 with a unique opportunity to experience residential college life in a Christian community and develop independent living and work skills through various on and off-campus internship opportunities.

And when I think about these students fully integrated into our campus community starting next fall, living in our dorms, eating in our cafeteria, cheering at basketball games and worshipping at chapel I am overwhelmed. And when the day comes that these students walk across the stage at graduation, well, it’s going to be a big puddle of happy tears and lots of joy.

A year ago I thought Cody was going to ruin my life, and now I know it is quite the opposite. Cody coming into my life has giving me new energy and new purpose and the platform and cause I had been longing for. Not only have I embraced being a mom of a child with special needs, I am ready to help others. Creating this program will bring so much hope to so many families and students with intellectual disabilities. Because of Cody, people just like him, are going to go to college next fall that might not have thought it was even possible.

God’s timing of this whole process has been perfect and I can promise you that if Gayle had gone to our president with her idea without me having Cody I can definitely tell you that I would have been very skeptical when it got communicated to me and I would not have used my influence to push it forward. I would not have seen the importance or understood the value of what a program like this would have and what it will do for these students and the entire Judson community. But instead, I am humbled to be a part of this process and I cannot wait to see the impact that this program will have.

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Thank You Mama for Giving Me a Chance

It was one year ago that I laid in my bed wailing. Full. Blown. Wailing. I had just received the news that my unborn baby Cody was going to have Down syndrome. I was devastated and thought life as I knew it was over. I wailed with a gut-wrenching pain that I thought would never, ever go away. I did not want this child. I did not want to be a mom to someone with special needs. The doctors were quick to tell me the options I had and the end result was not being Cody’s mom. I wanted a way out and I thought for a moment about listening to them but obviously and thankfully I didn’t.

One year later, I lay in the same bed with my 8 ½ month old baby and so much love and joy fills my heart as I hold him close. If I knew then what I know now, I would not have thought twice about being Cody’s mom. I constantly celebrate this little boy and am overwhelmed with emotion to think I didn’t want him in my life. If he could talk I think he would say “thank you mama for giving me a chance”.

He would say …

Thank you for giving me the chance to show you that I am not defined by Down syndrome and I am more like a typical baby than not.

Thank you for giving me the chance to create a bond with you rooted from a unique, fierce love that is unshakeable and even hard to describe.

Thank you for giving me the chance to give you the best cuddles while I giggle uncontrollably as we laugh together.

Thank you for giving me the chance to melt your heart with my big blue eyes.

Thank you for giving me the chance to show you my laid-back personality that is so easy to care for.

Thank you for giving me the chance to demonstrate my resilience despite two major surgeries before I was even five months old.

Thank you for giving me a chance to show you that even though my milestones are a little delayed I eventually accomplish them and it’s so exciting when I do!

Thank you for giving me the chance to be the reason you connect with other moms of children with Down syndrome who are now your good friends and give you hope for the future.

Thank you for giving me the chance to change everyone in our family for the better.

Thank you for giving me the chance to open your heart to new, amazing opportunities that are changing your life and lives around us.

Thank you for giving me the chance to prove to you that you can be a mom of a child with special needs and I am not going to ruin your life.

And I would say back, Cody, I am so glad I gave you a chance and I am sorry that I did not want to be your mom, but I am forever grateful that I am. I cherish you and I am so happy you are mine. I cannot wait to see you grow and achieve and love and thrive. And I will be your advocate every step of the way as you become the person you were made to be.

 

Your Loss

 

I celebrated my 41st birthday last month. And as I reflect back to the previous year you would think that I would be glad to have my 40th year in the books. Heck, I was surprised by an unexpected pregnancy, received a pre-natal diagnosis that my son had Down syndrome, cared for him for 17 days in the NICU after duodenal atresia surgery on day four of his life and then watched him have open-heart surgery at 4 ½-months old. Definitely not the easiest chain of events. It wasn’t at all what I expected year number 40 of my life to be. But I don’t view it as the worst year of my life. And actually in some ways it is one of the best. It is the year that stretched me in ways I didn’t know I could, it challenged my weaknesses and pushed me to a new level of emotional and spiritual maturity and it opened doors to adventures and opportunities I am still unveiling. And most importantly I received the gift of a beautiful son who brings so much joy to my life. Don’t get me wrong, there were some very dark days and a lot of tears in year number 40, but what I gained this year cannot be overlooked.

I recently had somebody confide in me that they received a pre-natal diagnosis similar to mine. She didn’t do the amniocentesis so it wasn’t for sure, but they were preparing for the possibility as they chose to wait until the baby’s birth to confirm. I knew she had to be just as scared as I was and I did my best to help her realize it was going to be ok either way. She was really hoping that it was a false positive. She eventually gave birth and so I checked in with her to find out if her baby had Down syndrome. She responded by saying, “Well, we got the good news we were hoping for, she doesn’t have Down syndrome”. And without any hesitation I thought “Your loss”.

What?

Your loss?

I couldn’t believe that this was the reaction from the girl who spent day after day pregnant in a dark cloud anticipating the arrival of a baby she didn’t even think she could love or know how to love. I was the mom who thought my life was over and that this child would ruin my life. I was someone who used to feel so uncomfortable around people with special needs. And now I felt someone was missing out by not getting a Down syndrome diagnosis?

Shouldn’t I be feeling jealous of her “good news”?

I couldn’t believe it. Do I actually think that having a child with Down syndrome is a positive thing? A blessing? A good part of my life? Do I believe that those that don’t get this experience are missing out?

I do.

This was yet another turning point for me as I continue to grow with Cody. And don’t get me wrong I would have felt the same happiness and relief that this mother did if Cody was born without Down syndrome. And I do know that our life with a child with Down syndrome is going to bring big challenges and more hard days and more tears and frustration. And I don’t expect or think people should hope for a child with Down syndrome. But what I do know is that life with Cody is wonderful and if you do receive the gift of a child with Down syndrome it is not a bad thing, you have not lost … you have won.

 UPDATE ON CODY: Cody has made so much progress since his heart surgery. He is now rolling over, smiling so much, recognizing everyone around him and holding his head up with ease while doing tummy time. He continues to be such an easy baby to care for. We recently did take him to the cardiologist for another follow up to his surgery. Although everything looks good regarding the holes that were closed up, the doctor did find another area of concern. It appears that Cody may have pulmonary hypertension that is causing mild tricuspid regurgitation. Obviously this was not easy to hear. We thought we would have a break from health issues since his heart surgery was done. But that does not appear to be the case. This condition is currently being managed by medication and we return to the cardiologist next week to see if anything has improved. We are hoping that medication will be enough to heal his lungs and that no other major surgeries will be needed and that there will be no permanent complications. Cody does not have any concerning symptoms and he is a very happy baby. We are hoping  that those are signs that he is doing well. Thank you for your continued prayers for Cody.

 

Happy World Down Syndrome Day!

I had the pleasure of attending the Chicago Region gala for Gigi’s Playhouse a week ago. Gigi’s Playhouse is an organization with over 20 locations around the nation and Mexico that provides free educational and therapeutic programs to families wgeneral-gala-slider-16-incith children with Down syndrome. I was really excited to get dressed up for this black tie event and to have a night out with my husband. Nearly 1,000 people attend this event and we would only know one couple and not much about the organization. We would just go and smile and have fun and blend into the crowd.

That’s pretty much how it went but what happened inside of me marked another step on this journey of having a child with Down syndrome.

You see, prior to having Cody as a child I was not very familiar with the world of Down syndrome. And I didn’t have a desire to. I always felt uncomfortable around people with special needs unless I knew them well. This is not something that I am proud of. Even after having Cody, I have continued to protect this discomfort. I have my three new mom friends that have children with Down syndrome, but I’ve had little or no interaction with their children. I have not attended any events or classes where people with Down syndrome would be. My extent of embracing the Down syndrome world has been Cody and caring for him as a newborn with the complications that his Down syndrome diagnosis brings.

We started the gala being welcomed at the door by about 20 young adults with Down syndrome. They were lined up in two lines for all the guests to filter between. They greeted us with smiles and handshakes as we entered into the event. We procGigiseeded to get our picture taken by a professional photographer alongside a young lady named Aubrey, who politely asked us if she could join in on our photograph. It was clear that this event was going to highlight the people that benefit from this wonderful organization.

The program started with speeches from various individuals with Down syndrome and they were amazing. They spoke with such confidence and were even witty at times. I loved when one young man demanded the attention of the room and encouraged cheering and applause! I was so energized by his spirit!

The group of individuals then took over the dance floor and performed a choreographed routine. Their smiles and joy lit up the room. They were so proud to be out there but yet nervous as we would all be performing in front of so many people. I stood there watching them and couldn’t hold back the tears. Tears of joy. These people are amazing and I am a part of this world now and it is good. It is really good.

After dinner there was dancing and you should have seen this crew tearing up the dance floor. It was awesome and so much fun! At one point a bunch of them jumped up on the stage and started playing the instruments and singing with the band. They were all having a blast and I was right there with them.

Today, March 21, is World Down Syndrome Day. Down syndrome occurs when someone has 3 copies of chromosome 21, hence the choice of today’s date. Prior to this year, I didn’t know this day existed and if I would have, it honestly wouldn’t have meant much to me. Yet, today I proudly acknowledge World Down Syndrome Day as I celebrate my little Cody. Down syndrome is a big part of my world now and I want others to be aware of how wonderful people with Down syndrome are. There is nothing to be afraid or to be avoided. People with Down syndrome have purpose and dreams and desires and talents and deserve to be loved, respected and embraced. So it is with great joy that I celebrate my first World Down Syndrome Day!! I hope you will join me in spreading awareness about Down syndrome and end the stereotypes and misconceptions that so many people have. I cannot wait to dive even more and more into this wonderful world!

CODY UPDATE: It’s been a few weeks since Cody’s surgery and overall he is doing really well. He is not eating as much as we would like and therefore is struggling with his weight gain so we hope to see that turning around soon. Also, at his 2-week post operation appointment the doctor noticed some fluid around his heart so we go back this week to make sure that goes away. He is a little fighter and a joy in our lives. His smile is contagious and he continues to be a very easy, compliant little baby.

Healing Cody’s Heart

destinationOn Thursday morning I have to hand my 4½ month old baby over to have open heart surgery.

It’s kind of a big deal.

A really big deal.

It will be a surreal day.

I plan to soak in every last second I am allowed to hold him before handing him over. I am sure the emotion will be overwhelming as I watch him be wheeled away. It will be agonizing to see my little guy with all those tubes and wires covering his tiny body. The tears will be inevitable.

I will watch the minutes slowly tick by as I wait for the four hours to pass. The hands on the clock will barely move. I am sure it will feel like so much time has gone by, but yet it will only be a few minutes.

If I think too much of what is actually going to happen to his body it’s terrifying yet miraculous.

Cody has a partial atrioventricular septal defect. He has three holes in his heart that need to be closed and patched. This is a common condition for children with Down syndrome as it affects about 25-50% of these children.

Although this is a major surgery on my little Cody I am focused on the destination and because of that I am actually excited for him to have this surgery.

Cody has a broken heart and tomorrow it will be fixed and he will be healed. And that is amazing.

Amazing that he gets to have a world renowned surgeon, who has studied his whole life to save lives like Cody, work on his heart.

Cody’s young life has lacked energy and development because of his heart condition. And tomorrow he will be on the road to growth and strength that I so desperately want for him.

The good news is that this heart surgery is highly successful and Cody should have a quick recovery and be a happy, energetic baby really soon.

There will be a lot of fear and anxiety as we approach this daunting surgery, but I will choose to focus on the destination.

My happy baby with a fixed heart.

 

Newborn Life with Cody

November and December are a bit of a blur. A good blur. My twins turned four in mid-November and then it was Thanksgiving and then the whirlwind of fun and events in December took over as Christmas and New Years were celebrated. For the second time in four years I got to enjoy these months on maternity leave. This time away from work allowed me to really soak in every moment and enjoy all the fun and special memories that come during this season. I strived to be present and not get caught up in the busyness. Having this mindset allowed me to experience every joy this time of year had to offer. But now it’s January and the decorations are down, the older kids are back to school, the events are done, the to-do list has shortened and I am now reflecting on the last two months with Cody since my last post. He is almost three months. I cannot believe it. Here is what I have learned so far:

  • The difference between a baby with Down syndrome and a baby without Down syndrome is … NOTHING!

Ok, he does have a really floppy head due to his low muscle tone, he has to go to more doctor appointments than most babies and it’s obvious the usual milestones are taking longer to reach than our other children, but Cody is an adorable, snuggable, cute as can be baby! He’s just like our other kids. He even looks like them! I don’t know what exactly I was expecting, but I thought I would constantly be reminded of his Down syndrome diagnosis. But I am not. Instead I am in awe of the beauty of this miracle newborn. His coos are precious, his hands and feet are so tiny, his skin is so soft and his big blue eyes are mesmerizing. And just like other babies, he cries when he’s hungry or not getting enough attention and there are lots of feedings and diaper changes. And of course there is the usual sleep deprivation, snotty noses and spitting up that comes with parenting a newborn. But thankfully Cody is easy to console and an easy baby to care for and he has not been a burden in our life at all. I know as the years go by, the differences from other children his age will be more significant, but I think even then it won’t feel much different. The love that I feel for this little guy is so strong and it’s already quite obvious that no short coming or challenge could ever alter the love I feel for him.

  • Being a second-time mom with a newborn is a lot easier than being a first-time mom.

Being a mom for the first time rocked my world. I had a really hard time losing my freedom while having no idea what to do with these little creatures that cried and pooped all the time. I didn’t like the first few months of motherhood. I expected to be excited and happy but instead I was exhausted and anxious. I felt like my life was over. I read every newborn book and article I could trying to master the art of caring for a newborn. I wanted to do everything right and perfect. Why would I think that is even possible? Of course over time I started figuring it out and accepting my new life. The milestones started happening and it got easier and this new journey was more joyful than not. I assumed when Cody arrived I would be feeling much of the same anxiety and unhappiness having a newborn again, but it has been quite the opposite. I now realize how easy caring for a newborn can be because I am so much more relaxed since I have done this before. Feed him, change him, hold him and simply enjoy him. I know what I am doing and it’s not a constant struggle to figure it out. I am not a fish out of water but rather am swimming upstream taking each wave as it comes. The changes and adjustments from having no kids to having kids was a lot more dramatic. Now my life is already chaotic with the other two and sleep is at a premium anyway, so the lack of sleep is not a shock. Sleeping in on Saturday mornings is long gone and quiet car rides are few and far between. Cody’s arrival has obviously added more responsibilities to our already busy life, but caring for him has not been nearly the challenge of being a first-time mom … especially of twins … which leads me to my final thought.

  • Being a mom of a single newborn is a lot easier than being a mom of twin newborns.

I could write a whole blog post about the amazing experience it has been parenting twins. Every day my favorite duo makes our life so fun and exciting. Watching them grow together and interact is so much fun and most of the time hilarious. But holy cow, raising twins is hard! Especially as newborns. Going from zero children to two. Wow. It was so much work. Two diapers to change, two mouths to feed, two sets of worries and twice the amount of crying. And going anywhere alone was such a challenge. Caring for one newborn has been so much easier and what I like most is that I have been able to enjoy the time so much more. At most stages with my twins, I was just trying to survive and keep them alive. It was hard to enjoy them, as neither of them had my complete, undivided attention. With Cody I am able to fully engage with him and the bond feels so much stronger. I am so grateful for the chance to nurture just one baby at a time so I can experience some of the joys of newborn motherhood I missed out on with twins.

As for an UPDATE on Cody’s health: we are getting closer and closer to his heart surgery. He has seen his cardiologist twice so far since being out of the NICU and he has another visit this week. The main goal is to beef him up so he is as strong as possible for surgery. He hasn’t gained as much weight as the doctors would have liked so we have made adjustments to his formula intake to help him receive more calories. You can tell his heart condition causes his body to have to work a lot harder as he eats and plays so he burns calories really fast and therefore is not gaining weight. Our guess is the surgery will be sometime in February but we continue to just wait and see.