A Story About Reassurance, Snuggles and Hugs.

It's been a while since my last post. So much has taken place since the end of June, when I last posted in this blog. A lot. Often times, I feel like this blog is therapeutic and other times I am just not sure how to put my thoughts into words. This month sneaked up to us so much faster than we thought it ever would. July always has had so much excitement for our family. It's a month of bbqs and family gatherings, it's a time to celebrate the 4th of July with fireworks and music, family and laughter. It is also the time to celebrate Bryanna's birthday. July 9th - a day that we will always remember. Bryanna is the lucky one of our three because she was born during the summer. That means, her birthday party was almost always a pool party. Evey and Liam certainly get their turn for amazing celebrations for  their birthdays...just not in the warm sun and around a pool.  This year we decided to honor Evey's request and have a luau party in honor of Bryanna. It was pretty special. It was very hard. I made a special cake that I think Bryanna would have loved - it was the most taxing cake that I have ever created. I wish she could have seen it.  Having pictures of Bryanna and Hawaiian music didn't help fill the void of her not being there. But we focused on the pool, the food and the festivities. We got through it.

The next day (which was actually her birthday), we put butterfly balloons at her grave site and then went kayaking to enjoy nature and take our minds off of missing her. The following day we were back to our everyday life and activities when reality hit. The kids didn't want to be at camp, they were sensitive and upset much of the day as I tried my best to patch the hole in my heart and theirs. It just wasn't possible. It was a stark reminder of what death means. It's not easy to get through the day without Bryanna running to snuggle before we have to get up, or hugging me at as I drop her off at camp. It's a stark reminder that pictures now take the place of her warm embrace and excited two step dancing when she was waiting for her cake to be presented. It is a stark reminder that there is a hole that cannot be filled, no matter what you put in it, no matter how busy you make yourself and no matter how loud you play the music. It's a stark reminder of the hospital walls, the hospital gowns, the hospital curtains and the hospital decor. It's a stark reminder that not everyone hits remission and goes home from the hospital. It's a stark reminder of the darkness of cancer.

 Time has passed and we have made it through. We have survived Bryanna's 10th birthday without her. Because she didn't survive cancer.

It's amazing how much sparkle Bryanna really did leave along the way. She continues to touch people that she never even knew. She was meant to sparkle. 

First time piping roses and flowers. I really think she would have loved this cake. 

Bryanna at her 9th birthday party with the hydrangea cake that I made. 

Our 4th of July festivities were strained this year. We thought long and hard how we should celebrate this day. We thought it would be a good idea to go somewhere different, do something we have never done, just so that it may be a little bit easier. But in the end, that didn't feel right. So, we went to our local town's celebration as we did last year. In true "us" fashion, we danced and sang to the music and we had a picnic. But it was different. Evey and I dug deep and tapped into our courage to request Bryanna's song by the live band. Not only did they grant that request, the put a shout out to "our baby girl in heaven who just got her wings". They made the crowd stop. The loud crowd suddenly seemed so much more in tune to the music and the words that they were saying. As we sat there, not knowing how to feel other than this incredibly huge hole, and as we try to get the kids motivated to dance and smile...we couldn't escape the fact that it will never ever be the same. We can take the same smiley selfies...which we still try to do as often as possible-  because you never know when those pictures will be all you have left...it's not easy and it's not the same. From the outside, we are a family of 4, happily taking a picture to lock that moment forever into time. But that's not us. We are a family of 5, making the best out of the worst situation, knowing that these pictures are so important. Having the pictures of Bryanna can at times make or break our day. Talking about Bryanna to Evey and Liam while showing pictures can give them a moment of peace that no amount of hugs, snuggles or reassurance can bring. There is a balance, but I am so grateful for these moments.

Last fourth of July was silly - we were dancing and having a pizza picnic and looking forward to the fireworks. Evey wore her fluffy princess skirt and was dancing to her beat, Liam was playing with the kids who loved his cars, without any prejudice or care in the world. Bryanna was trying to deal with all the little kids coming up to hug her because she was dressed as Elsa from Frozen. After about an hour of being there, she told me she wished she wore her regular clothes. She hated to be touched...and here were all these little kids looking at her with princess stars in her eyes as they thought they were in the presence of true royalty. She let them hug her, but didn't hug back. She was a trooper. She let them have their moment and breathed through hers. She once again put others before her discomfort, even though I know she would have jumped into the biggest and baggiest jumpsuit if that had been available. Unbeknownst to us, she was already battling cancer. She was already sick. Yet here she was, a picture of royalty -making a lot of little kids happy. She was amazing. They all were amazing. It was our last family holiday together.

This. Just This. Evey with so much spirit. Happy Fourth of July - 2016 when the world seemed right. 

Liam playing with a little boy that just thought he was the coolest kid in the world (I do not have the parent's permission to post this little guy, so I had to edit to protect his privacy)

Bryanna a.k.a Elsa - my most patriotic girl at the local fourth of July celebration 2016

💜💜💜💜💜

There are so many things that we deal with on an everyday basis but we try stay positive and know that we have a very special family. We have a family that extends beyond the 5 of us, a family that is close and far and that will be there with just a text or a call. As amazing as that is, we have also learned that not everyone has our back. Though I won't go into details here to once again protect the privacy of my children, we have learned some hard lessons with that as well and sadly had to put up a wall to protect our family. This is a boundary that we will have to figure out as we move forward as our family's privacy and protection is our utmost priority. There have been some people who have not had our family's best interest in mind and in doing so, put our kids in a potentially bad situation, and caused us unnecessary stress. I'm sure it would surprise them to learn though that at the end of the day, our team grew stronger, it grew bigger and we know who is really on our team. We hold strong and stand together. We get through it and we soldier on.  We protect our kids from the ugliness of the world as much as possible and like any parent, try to surround them with people that only love and support them.  It is easy to judge.  It is easy to move on, but this is our story. It is a story that continues to unfold and isn't necessarily always happy and pretty. It's a story involving ugly cries, being sad-mad, feeling a void...it is a story that involves therapy to help cope, counselors at camp who take the time to sit with the kids as they fall apart because God took Bryanna when they wanted her here. It is a story about family rallying together to  make sure we are not alone on Bryanna's birthday. It's a story about a lot of dark moments in a day but also finding the sun peaking through the clouds and taking moments to breathe.  It's a story of lots of reassurance, snuggles and hugs. It's about love. 

We know that for those families out there that spend their holidays at a grave site, for those families who picnic in front of a headstone, for those families who talk to a statue and keep the flowers fresh or prevent them from being eaten by the deer...I get it. Being at the hospital watching Bryanna fight so hard day in and day out was hell. But our hell was nothing compared to what Bryanna had to go through. Yet, she fought it with so much grace.  As I tuck Evey back into bed at 11:30 at night because she woke up and just needed a hug and a snuggle, and as I remind Liam earlier in the night for the gazillion time that though he feels alone in his bedroom, we are here with him - I am reminded of our love. I am reminded of our resilience to get through yet another trying and seemingly impossible trial in our lives. I don't know how we will get through this. I don't know when the kids will transition to new things easier and not struggle with the mention of certain things like God, Jesus and Heaven. I don't have any answers to any of this. I know that there is so much uncertainty in our days, and I know that not much can bring comfort, reassurance or healing. But I know with absolute certainty that what I see in my family - what I see in my team gives me the assurance that we will find the other side. We may not feel it now...in fact many days, I can't imagine the day when life seems easier. But, I have faith that it will be there. Yes, we will spend many days paying our respects to our baby girl's puppy angel...or more harshly...her grave. Yes, I will continue to make sure that she has beautiful flowers there with her fairy unicorn and her puppy angel. Yes, I will continue to pick the kids up from camp when it is just too much to be there without Bryanna. Yes, I will hold them in the middle of the night until they fall asleep again. I will reassure the kids that they matter and that they are not going to die. We will continue to have their back and each others no matter what this journey has in store for us.  Life isn't easy right now, but we aren't going to let it stop us from loving. We may all hate cancer, but we sure love life. 

As Liam stood at Bryanna's grave today, he said something really powerful. He said "I love you Bryanna and I will never forget you. When you are sad, I will make you happy". 

My little 4 year old spoke words that we have echoed throughout their life as a team. They resonated with him. He understood it. He got it. This moment was his moment to reassure Bryanna that he has her back. He always will. 

Bryanna's Puppy Angel and fairy garden at her headstone. I think she would have loved this all. Just wish it was in our garden and not at the cemetery. 

This is our reality. Our baby turned 10 years old on July 9th. 

Evey trying to find some peace as we celebrated Bryanna on  her 10th birthday. The strength that she continues to show when it is unbelievably hard is amazing. No child should have to face this. No child should have to lose a sister to cancer. Ever. Period.