I can’t believe today you turn six. What’s even harder to believe is you were diagnosed with a heart defect when you were only in my belly for six months.
This day six years ago we couldn’t wait to meet you. We were excited to see if you would look like daddy or if you would resemble more of me. We hoped we’d be able to hold you and kiss you but we knew those hopes were uncertain to take place. My greatest hope though was that you would be breathing, thankfully you were! Hearing you cry from across the room while your team of doctors worked on you was the greatest gift.
Fast forward to now, here I sit six years later at your tackle football practice!! How amazing!!! At one point we didn’t know if you would be able to play contact sports but just as you’ve done this whole journey you proved everyone that you’re a strong fighter who will never give up.
I have to tell you what I’m most proud of and it’s your academic accomplishments. We moved to Arizona not knowing much about the schools and hoping you would adjust well and then there you go the first month of school getting student of the month! Like who are you?! It is so amazing to watch you come home excited about what you’re learning and then watching you practice those skills all on your own. Daddy might tell you sports is most important but know mommy thinks academics comes first!
The world around us has been crazy lately and I want you to know that daddy and I will continue to do everything we can to protect you. We will not teach you to live in a world of fear so know that if you look back and realize there are things we didn’t tell you it’s because we wanted you to be a kid and enjoy your life free of fear.
I hope that when you read this when your older you are still thriving. I have the highest hopes for your future and I can’t wait to see all that you will accomplish but for now I look forward to what this next year brings because I know it’s going to be awesome😃
Always remember you’re my warrior, my fighter, and my hero.
If you know me personally or spent even just thirty seconds scrolling through my Instagram you know that my kids are my everything. Some may think parenting doesn’t change you but from experience I can say it does. My experiences may have changed me a little more and or differently then others but I can guarantee you I’ve changed. With all the beautiful things that motherhood brings I got the don’t have time for anyone’s crap attitude, cause really life is to short to play games, and the protective and comforting qualities to a severe degree. Again maybe the severity of these qualities came from having Brayden, my first born, be diagnosed with a heart condition before I even got to meet him followed by his years of treatment then having Makayla, my second born, be diagnosed with a heart condition after birth. Regardless of any parents personal story I believe to some degree there is the feeling to want to protect their children when they are born but its the as they grow older part that I am personally struggling with.
Throughout both of my children’s lives I have been there. I have been to every doctors appointment, sports practice, school function, I am the first person they see in the morning and the last person they see before they go to bed. I try to support them building friendships and in turn have built my own. I have been there for every boo boo that needed to be kissed and every no reason just because belly laugh. Now suddenly I feel that part of this is being ripped from me.
The reality is we can’t stop them from growing up. With every day that passes they are learning a little more, growing a little taller, and hopefully showing signs of becoming all you know they can be. My reality is hurting my heart. Not because they are bad kids but because they are growing up and I as their mother am not ready. That protective quality I talked about in the beginning is hindering my excitement for my kids and for myself. Brayden whose future was uncertain at one point is starting kindergarten and Makayla who has been with me everyday since birth is starting preschool and I for the first time ever will have a couple of hours in the mornings by myself to have peace and quiet, but I think thats what scares me the most, peace and quiet. They have become such a part of me that time alone on a daily basis seems scary. Actually no, what scares me the most is giving up control, dropping them off everyday at school and not knowing what they are doing, how they are feeling, if they need to be comforted – cue protective instincts – not being in control and being able to protect them not only scares but hurts me.
I don’t think I realized how much all of this was bothering me until Brayden’s first football practice the other night. It being his first football practice ever I knew he would need help figuring out the exercises but it wasn’t until a coach grabbed him and put him back in line that I realized how much having those protective instincts can hurt. It was my almost ready to jump out of my chair body reaction that made my husband turn to me and say “you need to let him go”. I don’t know how those words felt coming out of his mouth but hearing them was like having my ears stabbed with knives repeatedly but it was then that I realized everything in this post.
So where to go from here? When you realize your issues it should be easy to address them right? Well almost 6 years of protective mommy mode will definitely not go away over night or ever entirely and the idea of letting go is one I’m continuing to work through. What I do know is my kids are growing up and I can’t stop that nor would I want to so I need to learn to accept that I can’t control every situation. I need to focus on what I can control and that is teaching them things at home that will help them be able to navigate situations on their own as they continue to grow.
It’s hard to believe that last night my baby boy graduated preschool closing this chapter of his life. I am so proud of how hard he’s worked and the determination he’s shown, especially in the last few months where he really worked on the areas he was struggling most. He’s a social butterfly and will play with any child which is a quality that puts me at ease as we get ready to move. His love for learning is amazing and the way he absorbs information like a sponge is so impressive. I’m serious the facts he remembers during different class topics and lessons blows me away heck half the time he’s teaching me new things!
As proud as I am I couldn’t let the opportunity to celebrate his achievements pass me by, yes even at this age I believe it is important to show your children just how proud you are. Let’s be clear though it wasn’t a blow out type of celebration. Who doesn’t love a beautifully decorated cake with balloons and plates matching the occasion?
For me not only was it a celebration of his achievements but also a celebration of his life. Does that sound morbid? Well I apologize if it does to you but for me every milestone Brayden gets to hit is a celebration of his life and now I’m sure your asking yourself why. When Brayden was diagnosed with his heart defect I still had plenty of time left in my pregnancy to think. What a lot of people don’t know is that in those last 15 weeks of my pregnancy I had a lot of dark times. There were songs on the radio that instantly triggered me to cry. There were days where my brain acted as a tv screen playing reruns of the most devastating episodes of Greys Anatomy, you know the episodes where the patients don’t make it? And even though his diagnosis had a high rate of successful outcomes it was hard not to fall into the slump of what-ifs. And for the record continuing to hear “it’s all going to be okay” and “he will be just fine” are really not comforting after about the tenth time. Fast forward 5 and a half years and here I am out of the dark slump I once found myself in being able to look at the little boy who I once couldn’t think about without crying sad scared tears thrive and bring me to the happiest proud tears I could ever imagine. These emotions I have during these celebrations are so much more then just the event, they are the overwhelming emotions of “we did it, look how far we’ve come together after all we’ve been through” because not so long ago I really believed I would never get to share these moments with him.
So when you see the pictures of the pretty cakes and the balloons and decorations it is not to make anyone feel less about how they celebrate it’s just that these celebrations are everything to me because I’ve been given time with my child I never thought I’d have and I intend to make every part of this time -his life- a memorable celebration.
Take the time now to celebrate anything and everything because time goes fast and these moments will be gone before you know it.
Five years ago I was in hell…parenting hell. You’re probably wondering how that’s possible but I can tell you with 100% certainty that the temper tantrum your child threw at the grocery store over the candy bar you told them they couldn’t have doesn’t even come close to what watching your child be rolled away on a gurney towards the OR feels like. Maybe at the grocery store you are embarrassed, angry and ready to lose you’re damn mind but it doesn’t compare to the downright devastating and scared feelings of scenario #2, although the ready to lose your damn mind might be a close similarity at times.
Five years ago scenario #2 happened. I watched my sweet 5 month old baby boy be rolled away towards the OR to fix the heart defect that we had found out about when I was 6 months pregnant. Constantly talking about the possibility of surgery and then actually scheduling the surgery doesn’t prepare you for the feelings actual surgery day brings. As a parent you want nothing more then to be able to protect your child, fix their problems and take away their pain and in the hours I sat in the waiting room, next to his bedside and fighting with the pain management team I felt completely helpless. That feeling of absolute helplessness is why I relate this to hell. There was nothing I could do but trust his team of doctors and make my voice heard when things didn’t seem right. I am happy to say hell lasted about two days, when he finally started to take a bottle again there was a light at the end of the long dark tunnel from a few days earlier.
Now I look back and I can still feel those feelings on days like today but now five years later there is so much more to my sons story. He has been through so much since his surgery with the additional specialists we had to add to his team and the two additional times he had to go back in the OR (non heart related). Through it all he has stayed strong and in turn he has given me more strength then I thought I could carry. He has taken a love for things like collecting Hot Wheels for Toys for Tots and in those proud moments I’m reminded that the parenting hell I was once in only lasts for a small time and is replaced by these amazing moments.
So as a mom who has lived through this form of hell I am here to tell you to hang on, speak up and pull strength from the amazing warrior in you’re life. At the end of the long dark tunnel there will be some form of peace and I hope it’s the kind that brings you tears of joy and a smile.
It’s February 1st which means the start of Heart Health Month! Yes I know Valentines is this month too and 6 years ago February to me just meant Valentines Day, chocolate and roses but now it means so much more.
July of 2011, it was hot, I was about 6 months pregnant with my first child, a son we named Brayden, I was sitting at baseball 4-6 nights a week and did I mention it was hot. Well also in July on a visit at my local Maternal Fetal Medicne they noticed extra fluid in Brayden’s brain and referred us to The Children’s Hospital of Philadelphia for a follow up. This in itself was a huge hit to the excitement of being pregnant. How could my baby need to be seen by a specialist before he was even born?
The Center for Fetal Diagnosis and Treatment at CHOP got us in quickly to be seen. Before we knew it we were making the hour drive (without traffic) to the city for an early morning appointment for a day filled of testing. The day started with a Fetal MRI. I was put in a tube with protective gear for the baby and the techs did their thing while my then fiancée took a nap in the corner (sorry Jay I had to). The humming of the machine is hard to forget. Afterwards we headed for a regular ultrasound where they checked every single thing on Brayden’s growing little body. We then moved on to a meeting with a genetic counselor. She asked every question under the sun about us and our families medical history. We got a brief break to go grab some lunch and no it wasn’t all that healthy it was McDonald’s but when your pregnant and hungry in a time crunch sometimes that’s the best you can do and well at the time it tasted good too.
Back upstairs in the center we went in for an echo with the Fetal heart program. This is something we were unaware would be happening before getting to the hospital but it, thankfully, was a requirement for all mothers coming into the center for fetal diagnosis. It was during this part of the day where things started not to feel right. It started out like a basic ultrasound, I had warm jelly smeared all over my stomach, we could see the pictures on the screen, and hear his heart beat but the more and more people coming in and out of the room was not normal. Different doctors and techs were taking turns coming in and in the pit of my stomach I knew something was wrong. They printed us some more pictures and we were sent into the waiting room.
And then suddenly the waiting was over. We were called to come back to a conference room where we were greeted with not one, not two, but three different teams of doctors. First up was neurology, they told us that the fluid in the back of his brain was indeed fluid and not a tumor – in my head I’m screaming “yes good news!” Second it was urology’s turn, Brayden had struggled with enlarged kidneys since almost the beginning but after the ultrasounds they determined it was within the normal range for boys and that his kidneys were fine – in my head I’m screaming “yes more good news but who are these other people!?” Then the last group of doctors introduced themselves, they were from cardiology. Immediately my head started spinning why is cardiology consulting us right now we didn’t come here for his heart? The first cardiologist started with something to the affect of “we found something wrong with your babies heart.” Umm, what, come again?! The next doctor pulled out a packet of papers she laid out on the table. They informed us that Brayden appeared to have a double aortic arch which is rare to find this early since their hearts are still so small. With the help of a heart model and the picture diagrams they explained that Brayden’s aorta had two branches instead of one. The second branch wrapped around his trachea and esophagus. They couldn’t tell how tightly it was wrapped so he had the chance of being born not being able to eat, breath or both. If he did have or develop symptoms he would need surgery to cut the extra branch to release its grasp on these two important structures. They ended their presentation of Brayden’s diagnosis by placing a box of tissues on the table and gracefully exiting.
How in a matter of minutes could my heart shatter into a million little pieces? How could suddenly a relatively easy pregnancy turn into a nightmare? How could I have prevented this? Did I do something wrong? What if this ends badly? How could this be happening to my baby? Is this really my life right now?
Jason and I sat in tears as all of the above questions swirled in my head. The only positivity from our devastating news was that it could be fixed whatever that really meant. We wiped our eyes and made our way to the desk to make my next appointment. The next step was telling our family what had just happened, but first we went to Chickie’s and Pete’s and sat in silence. After managing to get down whatever food my sad and shaking body would allow we started the trek home and the journey of breaking the news to our parents.