I Have Known Perfect

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.

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Hayes has the Wheel

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!


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