My hope for you for 2016

As a grieving mother, I find the need to hold on for dear life when the holidays approach. It is such a long stretch of time and so many milestones and family traditions take place during that time frame.  It often feels like a tornado of feelings, and I am desperately trying to find something to hold on to and keep me from being sucked into the depression of it all.  Here’s the thing about the holidays- its not just Christmas.  The holidays start with Halloween and end with New Years Day- it’s a two and a half month stretch of emotional grieving.

I know I’m not alone.  And as we (finally) come to the other side of this difficult stretch of time, I thought I would offer some ideas about how my family coped this year and let the rest of you know that you weren’t alone in finding it hard to get through. 

Halloween was for me the least difficult to get through- but tough nonetheless.   I tried to imagine what Hayden would choose to become this year- a superhero, a Disney character, or a power ranger just to be like his big brother (of whom I am sure Hayden would be the biggest fan).

Thanksgiving always is and was again especially hard.  We have hosted the past eleven years since having our own home. Having him not at the table with us rips my heart out each and every year. Watching his cousins and his brothers enjoy being together and knowing he should be running in the mix is so bittersweet. But, like everything else, I have found a way to survive it. This year, we did a thankful jar for Hayden and we asked family members to write something they were thankful for having had Hayden in their lives. It was my way of making sure that he wasn't forgotten that day and that he was honored.

The entire month of December has been difficult. Watching Hayden's younger brothers at different stages- excited by blow up Santas, advent calendars, and making Christmas cookies and wondering what he would be getting excited about is all so painful. Watching them open their presents in their Christmas PJ’s with their sleepy eyes,  tearing through their gifts with smiles from ear to ear, was tough – while I am happy for them and with them, I desperately miss Hayden . This year was no different from the last three- I stared in wonder at what that little 3 year old red head would look and act like in the midst of it all.

There is just no sugarcoating the holidays. Christmas is difficult beyond words. And then New Years just marks the start of another year without him.  I'd like to tell you that it's gotten easier as the years have gone by but I'm not going to tell you something that isn't true. My purpose for writing these blogs is to provide an honest, yet hopeful picture. And to be perfectly honest, it hasn’t gotten much easier. I have however found ways to incorporate Hayden into our holidays and that has definitely proved to ease some of the pain.

Every year, my three best friends make ornaments with their kids for Hayden. We decorate a tree just for Hayden's ornaments and it is truly a bright spot in the season. Last year, I started a tradition with my kids and my sisters’ kids where I asked them to draw a picture of what they thought Hayden would like for Christmas that year. They decorated them and put them in Hayden's stocking. Then together we “opened” his presents and spent that time remembering and honoring him.

Our foundation also compiles care packages for four different cardiac pediatric floors during the holiday season in Hayden’s name. We love knowing that he is spreading holiday cheer for families spending that time in the hospital.

These are just a few things we have done as a family for Hayden during this difficult time.  My hope for you, other grieving families, is that you allowed yourself time to grieve your angel this holiday season and found a way to honor and remember them.  I hope you made new traditions while remembering them during your old ones. And throughout it all, I hope you remembered you are not alone in this.  Find comfort in knowing that even though your friends and families might not have the right words, or even sometimes no words at all, they are with you- thinking of you and your angel every step of the way.  

If you struggled this year to find ways to honor your angel, here are some ideas you might think about for next year from other grieving families:

  • Decorate his/her final resting place;
  • Have family and friends hang an ornament on their family tree in honor of your angel;
  • Light a candle on Christmas Eve and Christmas day;
  • Fill your angel’s stocking with toys that other siblings can enjoy;
  • Include some special items from your angel in a photo for your Christmas card;
  • Send care packages or gifts to the hospital where your angel was cared for; or
  • Make a meal for the staff at the hospital where your angel was cared for on holiday.

My hope for you is that you survived the holidays by finding ways to remember and honor your lost love. And my hope for 2016 is that you and I will feel our angels with us each and every day.

 

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Relationships in the heartland

Ady Dorsett shares some of her courageous story:

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.

 

Hayden

 

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Here are some pages and information we have collected to learn about hope after loss.

Reach out Information to connect with families who have lost a child with HLHS.
Hope After Loss Blog Collection of articles and blog posts for families.
Resources Some resources to explore when you are ready.
Healing of the Heart A retreat for Mamas of Heart Angels.