Earlier last year, in February 2017, I woke up to a direct message in my Instagram mailbox. I get lots of messages and I really try to respond to each one because so many are from parents of newly diagnosed children and I want to help them as much as I can. Waking up to a new message was not unusual, but seeing who it was from was definitely shocking. It was a message from Rachel Parcell. In the Instagram world, Rachel is a big deal! I had been following her for a very long time. Here is what it said: Read More
You know that feeling of letdown after a vacation. Well ever since I lost Hayes, I dread that letdown even more because I come back home from a trip that was healing only to realize life is the same. Hayes isn’t here. So when we came home from our last trip to California this past month, the feeling was no different. I really was not looking to coming home.
After a long road trip home, we pulled up to our house and oddly enough, Steve didn’t pull into the driveway. He put a movie on in the car for the kids and told me he had something to show me in the house and he grabbed my hand and walked me into our seemingly empty house. He walked me up the stairs to our master bedroom and I opened the door to a magazine cover. No way was this our house!
I was completely beyond shocked! Our house was definitely not empty. A camera crew, producers and a few other people were stuffed into our bathroom ready to surprise us. And then the sweetest couple walked in behind us to give us a hug and formally present us with the gift they had given us! Two people I did not know had taken a week out of their lives to offer us a gift I so desperately needed….a sanctuary. They were Cara and Tom Fox. A couple that designs and builds the most beautiful homes you have ever seen. They had reached out to Steve to surprise me with this unforgettable gift.
I feel incredibly grateful and still blown away every time I walk into my room. The peace, the little #HayesHints and the beauty of the room has truly lifted me up. Thanks are of course in order to Cara and Tom of Fox Group Construction and Overstock for the gorgeous furnishings! You made my home feel more like home. So thank you!
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.
Sometimes it is hard to notice. The day to day is stressful, there is always something to want more of and it is easy to forego gratitude. A while ago I began waking up each morning, immediately shifting my mind to things I am grateful for. Every morning, before I even open my eyes, I mentally list off the things I am grateful for. Sometimes it is huge things and sometimes it is something as simple as feeling grateful for the sleep I just woke up from. Sometimes it is hard for me to see through the fog of stress to see the things that make me happy, but looking back on my life when Hayes was here, I feel overwhelmingly grateful for so many things. I recently read a quote that could not be more true and more applicable to my own situation.
“Enjoy the little things, for one day you may look back and realize they were the big things.”
Isn’t that so how life is? It is easier to feel grateful when you are seeing things in hind sight. But, if there is anything Hayes taught me, it is that life is full of little things to feel grateful for! So, I am launching a 5 Things to be grateful for series. Once a month I will list off 5 things I am feeling grateful for. I am hoping it changes my outlook more permanently! I am hoping it reminds me to be more present and I am hoping it helps me feel more happiness during the dark days and moments.
1 – Reality TV … I know this seems incredibly shallow and unimportant, but you know what? Sometimes I need the mindless distraction. Sometimes I need to forget myself and sometimes I need a good laugh. Reality TV is one of those things for me that allows me to turn my mind off. When Hayes was in the hospital, I would put him to bed and lie in my little corner of the hospital room and watch my crap. Lift my mind out of the heaviness of childhood cancer. It was and still is a magical distraction.
2 – Coke Zero … Here is the devastating thing about Coke Zero, they are discontinuing it. Steve and I felt like crawling into the fetal position and crying many times today after hearing the news, but we stayed strong and cracked open a few extra cans of burning liquid to show appreciation for our favorite source of “hydration”….in all honesty, it really is something I am grateful for. Every day, when Hayes would take a nap, I would leave the room, go for a walk and purchase an ice cold fountain drink and the miracle was that they had Coke Zero! It was my daily vacation from the cancer unit.
3 – Summer Nights …. I am so not looking forward to fall because it means giving up the gift of summer evenings. I love when the sun is going down and everyone glows gold. I love how the air is still warm from the day. I love how lately there has been a slight breeze and birds have been chirping in the trees. I love laying on the tramp and staring up at the darkening sky and thinking of my boy. Completely immersing myself in the memories of Hayes. Escaping for a minute. It is heaven.
4 – Social Media … it is so interesting when people have such disdain for social media. I would have agreed with these people in the past, before Hayes got sick, but I think it is one of the greatest gifts of my life. Like anything, there are negative aspects, but mostly, it is a network of strangers that love and support one another. I feel lifted up daily by good people around the world that send me messages of support and love. I will always be grateful for the community and tribe that lift me up. I am beyond grateful for each and every one of you. I thank each of you for your part in my journey.
5 – I-Phone … no question, my most prized possession outside of my family, is my phone. Weird right? But, so, SO true. The amount of pictures and videos that I have on my phone of Hayes is unbelievable! Before smart phones, I never took time to document. But, every detail, every single beautiful moment was captured. I find a new video at least once a week and a new photo once a day of my perfect little boy. What an incredible blessing! That is why, my phone is my most prized possession. It is my link to my boy. A promise to myself that I won’t forget.
So those are my 5 things to be grateful for in July. Life is a series of thousands of tiny miracles. Notice them.