Hayden's Heart: December 2015

This is our son Matthew Mursch Jr. He is a 4 year old heart warrior whose spirit and personality is so contagious! He was diagnosed with a severe congenital heart defect called Hypoplastic Left Heart Syndrome at our 18 week anatomy scan. My husband and I went in to the scan so excited about finding out the gender of our baby. Never did it occur to us that we would find out our baby would be born with half a heart and our lives would be changed forever. From that day on we wondered why did this happen to our baby? Was it something I did? Was this scan read wrong? Why.. Why..

We followed up at Children's Hospital of Philadelphia where we fell in love with everyone we met. We weren't just another couple with a high risk pregnancy; we were their patient. We found out our son would need 3 heart surgeries and a possibility of others. I gave birth to Matthew on November 29th, 2011 in the SDU at CHOP.

I immediately fell in love with my 8lb 14oz baby boy! They brought him to my bedside so we could see him before he was rushed to the CICU to be stabilized. That's when it actually hit me that our son would be battling for his life. He had his first open heart at 7 days old, his second surgery at 3 months old, and his third surgery at 2 1/2 years old.

There is still the question about what may happen next in our mind. We don't know those answers. All children with CHDs are different. Could possibly need another surgery or transplant. We won't know. We are so blessed that he is here with us and doing well. We can't ask for anything else!

We are so honored to be a part of Hayden's Heart 5K. Hayden has a special place in my heart and I know he watches over Matty. Ady was the first heart mom I met while we were at CHOP. Our sons pods in the CICU were next store to each other. We are so blessed to have become friends with her and her family!

This is another blog I wrote to support grieving families through Sisters By Heart. Thank you SBH for providing me with this platform to support other grieving families, and thank you Jackie for your friendship.

Relationships in the Heartland

Motherhood can be the greatest gift- and the greatest challenge all in one day. Especially for a heart mom. Family and friends often cannot relate to what we witness our children go through on a daily basis. Whether if be a huge ordeal like open heart surgery, or daily tasks such as shots of lovenox, its all foreign to anyone outside of our community. Thank goodness for our fellow heart moms. I know that most of us heart moms can agree that if not for each other, the world can often feel like a very lonely place. Having those people- most of whom we’ve never met in person- be there to understand what we mean when we say terms like effusion, shunt and lipids- can really ease the situation and remind us that even though we sometimes feel it, we aren’t alone. Some of these heart moms quickly become our best friends- the people we turn to first when anything happens to not only ourheart children- but even other aspects of our lives as well. Relationships so strong you know you’ll be friends – practically family- forever, and so will our children. Unless one of them dies- then what? How do we move on in our relationship- are we still friends? The relationships we at one point felt most comfortable in quickly become the ones that feel most foreign. As a grieving mother, we again feel complete isolation. And I can assume that the surviving mother feels confused as to what to do, say, how to act- the entire relationship just becomes incredibly confusing and complicated.

The day Hayden died my entire world completely changed. Every single aspect of it. The way I lived my life, the relationships I had, the feelings I had towards my faith, the way I slept-ate-breathed. EVERY single part of my life changed. For the first few days, weeks and even months after he died I didn’t know who to talk to- who to be friends with- if I would even have friends again at all. No one understood me or could relate to me- except fellow angel moms and that was a group I was just not ready to accept that I was a part of. My ‘normal’ friends seemed so far from my reality- they didn’t have a sick child- and that was at times tough enough- and now my sick child is gone which made it even harder- at first. I soon realized though that the toughest relationships to uphold moving forward would unfortunately be that within my heart community- those whose heart warriors were still fighting.

I remember Hayden’s funeral. I held it together very well I think thanks to an old friend, Xanax. I held onto Hayden’s lovey the entire time and although I shed a tear here and there, I for the most part was able to almost separate myself and pretend it wasn’t my child’s funeral I was at. There were only two times I outwardly sobbed- so hard and so loud I could actually hear myself echoing through the funeral parlor. The first was when my aunt from Canada came through- her first daughter also had HLHS 20 years ago and died at two days old. I cried mostly because I knew she too had felt the unbearable-indescribable pain that I was now facing and that hurt my heart to know that pain was in someone else I love. The second time I cried out was when my closest heart mama came through. I cried because she was, at one point, just like me- she has a son just like mine. We were friends because of our children. I remember sobbing in her arms- thinking how strong of her to be here- knowing just a few weeks ago we had talked about another baby who had died in our community and we were both scared to death at the thought of that ever happening to us. And I know coming to Hayden’s funeral scared her beyond words that this someday could be her. Having her there meant the world- but I was pretty sure with Hayden dying our friendship would change and we wouldn’t have anything to relate to anymore. Would she be scared to be my friend- as if Hayden’s death were possibly contagious? I wasn’t sure any of my heart moms and I would have any reason to even communicate at all after this.

The first year was the toughest for me. I hate to admit it, but often times I was jealous of my fellow heart moms who still had their warriors. I couldn’t for the life of me figure out why God didn’t give us our miracle- but then gave it to so many other families. We too prayed with thousands for Hayden’s miracle just like they all did. I watched on Facebook as several of Hayden’s buddies had their Fontan and it would knock my feet out from under me for at least a week. It hurt so bad that he wasn’t here doing what they all were- and he never would. I’d often think I must be crazy being jealous of a friend and her child having open-heart surgery. But of course if having heart surgery meant Hayden were still here, I’d take it.

After Hayden died there was always what felt like that ‘elephant in the room’ whenever I was around or spoke to other heart moms and families. The internal pain we were both feeling for not only my loss, but also the worry that they may too someday feel this pain was unspoken, but so intense. The relationships us heart moms have are so raw, so intimate- so unique. There is nothing else like it in the world. But getting over that initial hurdle after one of our children dies and still remain friends takes a lot of work, a lot of patience, and a lot of openness.

I am so thankful that heart mom from Hayden’s funeral kept pushing on in our relationship. She wasn’t afraid of me. She stayed around- she set up a meal train after he died, she visited, called, emailed, text. She stayed in the for-front and to this day I know it is because of her openness and persistance that allowed us to remain great friends- even with that elephant. And now almost three years later our friendship is even stronger. Even though Hayden isn’t here, we still have things in common. I love being able to share in her sons improvements and I know that I will always be involved in her families life, and her in mine.

So yes- upholding a friendship with my fellow heart mamas has been a struggle for sure- and three years later I still have a deep internal pain that goes through my body thinking ‘oh how I wish Hayden were the one going to follow ups or caths at CHOP or CHP like our heart warrior friends do’- and I know those thoughts will always be there. Watching them experience their 3rd and 4th birthdays, eventually start kindergarten, graduate middle school- god willing all of this happens for these kids and I know to watch them reach these incredible milestones will bring me such joy… and also pain- but to push them out is just not an option. They are a piece of Hayden and that life we had together and that alone is reason enough to push through the pain and remain a part of these families’ lives.

So I guess it all comes down to what you can handle, when you can handle it. If I can give any advice or insight into this newly uncomfortable relationship, I would tell the grieving mama to step back if you need to, un-follow, hide-whatever that means to you. And to the surviving heart mama- don’t stop being their friend. They need you now more than ever. If they don’t answer your phone call, don’t take it personal- although it very well may be. Don’t push them away. If they don’t answer your phone call, text them- email them. Don’t stop supporting them. They may not be able to handle the friendship just yet, but let that be up to them. Don’t just assume they don’t want or need you. But be prepared that they may ask you for space, and if she does, give it to her- but don’t forget about her or her child. Say her child’s name. Remember her angel and talk about them- honor and remember their birthday, angelversary, reach out on holidays- those dates are all so unbearably tough. Your grieving friend may never come around- everyone is different. But I know for me, all it took was to know that even though my heart warrior died, I was still loved and accepted in the heartland.

4th annual 5K birthday bash!

14 December 2015

meet matthew!!

11 December 2015

Relationships in the heartland

03 December 2015