I left my family vacation in Colorado to fly home alone for an immediate biopsy.
On his second birthday my baby boy woke up at his grandparent’s house because I was only two days out from surgery.
Even though my neck could hardly hold my head upright, I tried my first bites of food on my daughter’s 7th birthday.
My partner teacher moved into my classroom over the summer as I wouldn't be returning on the first day of school. Instead, it was my first time in public to walk my big boy to his kinder classroom.
By my sons 6th birthday, my girlfriend’s helped me prepare for his day. They baked a cake, cleaned the house, decorated, and brought food. I did a lot of sitting.
The weekend of the Boss Mom Retreat in San Diego, a weekend I had planned for 9 months, was spent recovering from chemo.
The Lighthouse Academy came and went as I prepared for chemo #2.
During the PLIDA conference (where my book sold out at the bookstore even without me there) I had excruciating radiation burns my mouth.
I watched two adorable Power Rangers head to Grammie and Grandpas Halloween party as I slept the entire time they were gone.
Reid had two soccer games this weekend but I had to save my energy for the drive to Kaiser for chemo labs.
I have missed so many things I had planned, looked forward to and wanted to be part of. I have cried when the house became empty after the boys left and I was alone.
The daily pain is indescribable and has been left unsaid because it’s personal and I need to focus on rest and recovering not complaining about something I cannot change.
So I rest. And I recover. And I remind myself that the best-laid plans are the ones that life laughs at and that all of this is temporary.
Tomorrow I have my final chemo. FINAL. As in, I am almost done. A few more days of life put on hold before my body can start the healing process.
There will be more days of missed events, of days that I wish I could be part of, but in the grand scheme of being alive, these small sacrifices are worth it. There will be more retreats and conferences and soccer games and Halloween parties.
Because I put life on hold now, there will be more life to live and THAT makes it all worth it.
I am sad to have missed these moments, but there are so many more moments left to live for and because I am CURING this cancer, I will be here to experience them.
One FINAL chemo. Warrior on.
I have lived 5 1/2 years without my sweet girl. 5 1/2 YEARS?!
I am often told, "I wouldn't survive if my child died." I didn't think I would either. In fact, I still don't know how I *have* survived the last 5+ years. But, I know that I have gotten up out of bed every day and put one foot in front of the other and suddenly those days, turned into weeks, turned into months, turned into years.
After Ruthie Lou died, I had an epiphany moment; I would live for her now. In the moments that I didn't want to live for myself, I would live for her instead. All of our children (living and not living) come into our lives as such blessings, they truly are gifts. I quickly realized how impactful the life of my daughter was and that I would do her more honor in my healing, than in my hurt.
But it hasn't been easy.
It miss her so much.
I ache for her when I see her brothers doing fun stuff. I am heartbroken when they reach a new milestone or have a bonding moment and a get that twinge of "she should be here" thinking.
I guess it will always be that way.
I have done a tremendous amount of grief work. TREMENDOUS amount. I feel strong. I feel joy. I am grateful for my family. I live a really good life. And I will always miss her.
Five and a half years. I am so grateful for her. I would never have chosen a baby other than Ruthie Lou, with her sweet puckered lips and curled fists. She is my baby. She will forever be my first-born and only daughter.
And I miss her still.
5 1/2 years.
I only hope to do her proud.
Five years ago to the day, we sat in this room, our apartment with Ruthie Lou. The couch has changed, the room has not. At the time, Ruthie Lou's neurologist didn't think she would survive through the night so she captured this photo, in the case that it was the only family picture we would possess outside the hospital walls. She lived another 12 days.
Yesterday we walked through those doors again, this time with our family now complete with our two beautiful boys. When we stepped in those doors at George Mark the first time, it was to say goodbye to our girl, we knew why we were there, we were bidding our baby farewell. The most beautiful time in her life was there, it is her home and we will always remember the importance of GMCH, in our life and in our healing.
But this time we went to introduce her littlest brother to the George Mark family, to share the love that he has brought into our life as well. Adam is now older than his big sister will ever be, he has surpassed her 33 days. To hold him, healthy, growing, changing and thriving, reminds me of all the things I missed with his sister and how fleeting my time with her really was. When she was living, time stood still, the world stopped moving and her brief lifetime changed mine. But now, 5 years later it seems like I have lived someone else's life, with only the heartache of missing her to remain.
For the first time, Reid asked to see the apartment that we shared with his sister and we sat on the same couch that we held Ruthie Lou on, but now with her two brothers. It was bittersweet, the closest that we would all be together as one family. These pictures of our family and with our children are sacred to me, sitting in the same spaces sharing our pure love for them. My only wish is always that they could all be in the same picture mfor real.
I love our family. I love the life I now live but it will forever be missing a third of my heart, the part reserved for my babies. The missing never leaves, the wondering never stops, and as I watch my boys and the children I'm surrounded with-I always ache for the daughter I'll never see grow.
My smile is true, I live in this moment, but the pain of living without my child is real every day.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.