You know how they say grief is like the ocean? I have hit that point in the waves where I want to run away with my family. I literally day dream about selling all of our valuables and our home and moving to a remote tropical island and living off the land with Steve and my kids. A place where shoes and brushing your hair is completely optional. To get away from the heaviness of the world. Don’t panic, I won’t, because the logical side of me is still very much intact. But, part of me wishes I were that brave because my family feels closest to Hayes near the ocean. It feels like home. Read More
I have been open from day one and I will continue to be open. The reality of my new world of grief is that I shift from sadness to doing ok to anger to everything in between. The past few days I have been angry. I sometimes feel like life has moved on without us. We are in this bubble of our home and I have zero intentions of leaving. I can’t bear the thought of going out into the outside world, where stresses are things I would give anything for. I lost my baby…8 months today. I ache for him.
Sometimes I feel like this can’t be real. This was not how I imagined my life would be. I was going to raise my six kids and stress about naptimes, carpools and school lunches. Was he ever actually here? Or was he the best dream of all time and now I have to live each day wishing for sleep hoping for that dream to return. He was here right?
I guess it gets strange in my mind because the world moves on and I have to learn how. How? I have found ways to distract myself, to slowly close up my broken heart. The foundation has become a bandaid that I am so incredibly grateful for, but I know deep down, it is just a bandaid. I am still broken inside and most likely, I always will be. I have to learn to live broken, I guess.
I have this feeling that Hayes is busy. He hardly misses me because he is discovering everything he missed. It has been 8 months but to him, I hope it feels like 8 seconds. I hope he feels no sadness for me because all I want is for him to experience joy…pure unpained, cancer-free, toddler joy. Ugh!! I miss him so much.
I have to keep reminding myself that this pain, this is life. Life is a mash up of earth shattering lows and the highest of highs. I am so lucky to have known those highs…when all 8 of us slept under the same roof. When we drove to California and Disneyland. When we would get Hayes out of bed at 10pm to play with us in our room. I have known a perfect life. I will forever have that to be grateful for. It is ok to be mad sometimes…that is just how I feel today. Sad and mad and heartbroken and grateful. I am a sad but I am a lucky one.
In the past 2 weeks, at least a part of our family has been in Idaho, Nevada, Arizona, California and now Colorado. We have gotten Brave in our adventures and we have figured out things that work for us when it comes to managing toddlers strapped in a car seat for hours on end. I love that we have become more adventurous, but like anyone, we have moments where we want to pull our hair out. These items at least help buy us a few minutes here and there of quiet. I throw in a lot of technology, but I am a big believer in “Why Not?” When you all have to survive in the same stinky and cramped place! I load up our iPads and pretty much encourage my kids to watch endlessly! 😂
This portable charger is an absolute must. Pretty much your road trip life is over without one! I love this one because of the built in cables. We actually have 3 because we use them constantly…. now that I actually put it down into words, I am kind of embarrassed with our love of technology.
Ok, so these next two items are random and weird, I know. Just have an endless supply of both on hand for your toddler and I swear you will thank me later!
This last item is obvious, but the reason I like having one is because I absolutely despise feeling claustrophobic in a messy car. I like that the kids have. Place to throw away all their garbage. Plus this one comes with bags!
Only because I can’t seem to stay home for more than a few days at a time, I would love to know what I am missing! What are your secret weapons for traveling?
My stomach had been a bundle of nerves in anticipation of these moments. I was nervous. This place was a place where 7 months before, life had been beautifully perfect. Our kids had played in the sand, the babies had climbed on the playground and Hayes had swung in the swing, tube free and cancer free for a moment. Our lives had culminated to that day on the beach with Hayes and pure bliss and the true meaning of life was felt. I was nervous. What if we never feel that again? How can we possibly feel that ever again without Hayes?
We walked up to the beach, the one that now belongs to Hayes. The beach is on Balboa and there is a playground right on the sand. A row of swings is lined up along the side and during the day, it is usually hard to find an empty swing. This day was no different. All of the swings were packed with parents pushing their happy kids. But, there, in the center, was Hayes’ swing, sitting empty and lightly rocking in the beach breeze. He was waiting for us. His soul had pulled us back.
It was a quiet, peaceful feeling. A part of our family will always be there. We cried, we hugged and we talked about our sweet boy. Bo was touched more than I had expected. Our older children seem fine but sometimes it hits them and thankfully, they let it out. Bo cried in my arms and was my little boy for a minute.
One of the reasons we started the foundation is because we want other families to experience the joy we felt in California. The Make-A-Wish foundation is so amazing and does so much good for the world. But, a little known fact is that they don’t grant wishes for children under the age of 3. But cancer affects the whole family, so a huge group is neglected and forgotten. We hope to fill that gap. We have been able to help several families already.
The next day, after the beach, we had arranged to meet a family I had found on social media. The Ellis family has a little 16 month old baby girl that has Choroid Plexus Carcinoma which is exactly what Hayes had. She is being treated at the Children’s Hospital of LA. We arranged to visit them and it meant so much to us that they welcomed us into their lives for a moment. We had raised money for them during the month of May, brain tumor awareness month. Gifting them a check and telling them to make memories with their children made all those painful, fresh wounds worth it. Hayes wanted this! I feel like Hayes directs us to those kids and families that need us. He has the wheel, I am just sitting there while he directs me!
That day I received a message in my inbox. A follower I do not know reached out to me and asked me if he could gift our family tickets to Disneyland. To be honest, we hadn’t planned on returning to Disneyland anytime soon. It was still too fresh, but once again, it wasn’t up to me. I truly felt like Hayes was giving us the go ahead. He wanted us to return. The next day we went and it felt like one HayesHint after another. A Mickey sticker on the cement, Mickey ears found unclaimed for Mia, a tiny Mickey Mouse bead on the ground, walking into a shop and seeing a Disney “H” on the ground, getting the green car on our first ride, seeing two separate sets of triplets, and lastly, seeing a butterfly land on the Mickey Mouse hat of the man in line in front of us. While all of these may seem small, I felt like it was our sweet Hayes, encouraging us every step of the way. Love that boy so much for the joy he continues to give us.
Newport was so perfect. It will continue to be a Mecca that we return to every year, in honor of our Hayesey. Our plan is to return every November, a yearly trek to honor our boy and recognize the happiness he gave and continues to give us. How lucky are we that he is ours?! We know him, we love him and we now live for him. I feel hopeful that although he isn’t here, he will continue to give us opportunities for bliss, memories and hints. Those are the truly meaningful moments of life!
We made it to Newport Beach. We weren’t planning this trip, but that is how life works now, we do things on a whim and live in the moment. The drive was surprisingly not difficult. But, there was an obvious missing piece as we made the identical trek we did 7 short months ago. How do I live in a world where he isn’t here? How is it that 7 months ago he was a shining light and the peace maker in our family? He was the epitome of joy! He is still our joy, but this missing piece, this hole in our hearts is so unfair and painful.
We are making all the same stops, retracing our steps. Today we stopped at the lighthouse park where Hayes went down the slide over and over again with the help of Steve and said “one, two” over and over again as he slid his froggy legs down the slide. Seeing that slide made my stomach drop. When we were here, we had no idea that our world was about to change forever on the drive home. We watched as Hayes experienced sand in his fingers and his toes. He even ate a few grains of sand and I loved it, because that is what babies do….he was experiencing life as a normal cancer free baby. It is surreal. I was so naive. I sat on the beach and felt fresh heart break. I looked to the side, and there, sitting in the sand next to our family was a bright green ball, lying unclaimed in the sand next to us. A #HayesHint, a love note from our baby. He was there.
It was then time to go to that all too familiar swing at Balboa Pier. As we walked up to the park with the swing I found myself questioning if we did everything we could for our baby. I know we did, but there was this little doubt that kept creeping in as I remembered how perfect and healthy he was when we were here. Cancer was a bump in the road, we had made it through mostly unscathed. We were the lucky ones. Tears burned my eyes and heart break squeezed my chest as memories slid through my mind of a day when life was more than anything we had hoped for. How quickly life changes! Being there was spiritual, though. I felt him close. What are the chances that his swing was empty, slightly swaying in the ocean breeze? He was there! We all held each other and cried. I reminded Bo that our hearts were remembering the love we have for him and that is why it hurts so much.
But the most amazing thing is, I feel like Hayes pushes us to do everything we do. In May, The HayesTough Foundation raised money for a brain tumor family. We found a beautiful family in Southern California whose baby girl has the same exact cancer Hayes had. She is midway through treatment and in the throws of the sicknesses that are all too familiar. We weren’t supposed to be down here, but things fell into place and now we are able to go visit them in person and give them the check from #HayesArmy in honor of Hayes….little miracles reminding us that Hayes still has a mission.
On top of that, we had no intention of taking our kids to Disneyland. We did it with Hayes in November and part of me wondered if it would be too hard and too sad of a reminder of a life that is gone now. But then Hayes acted again. A follower that we have never met sent us tickets to Disneyland as a gift. He paid for our entire family to go enjoy ourselves again. What an incredibly kind gesture. One that I cannot begin to express gratitude for. There really are amazing people in the world that are truly being a part of the good. All of which have been #HayesInspired. I have no doubt, Hayes had his hand in this.
The world is not the same without my boy physically here, but he still lives. He is still leaving his mark. I see it around every corner. In the messages I get from you all. In the hints he leaves me everywhere. In the good that is coming from his legacy! Hayes still lives and I am honored to be his mom as we retrace the steps that remind me of him. One step at a time.