Another Milestone - First Day of School

When you have a child, you always try to envision their future. You want to protect them, guide them, love them and watch them hit those key milestones and see how they grow.

When Max was born, we had so many of those same hopes and dreams that never came to fruition...it wasn't a part of his plan. But after all of the grieving, coping, and change that has been presented to us...we are in a "new normal" phase of life as a family. It is hard to swallow that this is the new normal for us but our family unit has turned into a group of 3. Emma continues to play the "only child role" in a weird sense and we've adjusted the best we can. However sometimes, the reminder that Max is gone still just jumps out at key times in life.....that Max has moved on and is no longer a part of our earthly family unit.

It hit me hard yesterday and especially this morning...Max would have been in kindergarten this year.  He would be at a new school, making friends, learning new academic and life lessons and Josiah and I would be going to the "Boo Hoo" breakfast thinking that our last child was entering school. It makes me wonder how he'd do, what teacher he'd have, what challenges he'd face.

I walked Emma into school this morning with Josiah and held her hand a little longer, took a few more pictures...just grasping for anything to help slow down time and allow me to enjoy my little girl a little longer. It is the last first day of this grade for us...but it shouldn't be. Emma and I chatted about Max last night before school and she said how she wished she still had a brother and it isn't fair that all of her friends have siblings. I just held her tight, got tears in her eyes and reminded her that she is always a "sister". She always will have a "brother" even if he's not here anymore. But it is so hard for her to grasp this. She was only 4 when he passed away and has more and more trouble remembering our events/memories. I know she longs for a sibling in such a strong way. She showed him so much compassion when he was here that I know she longs to share her life and stories and experiences with a sibling again.

I was also caught off guard last week. We got to enjoy a family Disneyland trip together...something we got to do twice with Max and as a family unit of 4. We continue to cherish those memories. Emma really wanted to see the show "Turtle Talk with Crush" where the turtle from Finding Nemo asks the audience questions and has a really fun interaction with the audience throughout the show. I told Emma she should think of a great question and raise her hand to ask Crush. She was being shy and decided that she didn't want to ask anything. However "Crush" called her out in the front row and started interacting with her - what a special experience for her and she was super excited. He referred to her as Epic Emma (how fitting for her). Then he asked her where her "parent figure" was, and it was my turn. He asked me if I had any other kids other than Emma....I froze....that is always the dreaded question I fear. I wanted to scream to the rooftops that, "Yes, I had an amazing son named Max who loved his sister and smiled and laughed and experienced so much but was taken away too soon by a dreadful and evil disease called Krabbe." And I usually answer this way (in a lesser tone) in most one-on-one conversations....but all that came out was, "No Emma's my only one".........."new earthly normal".....I hate myself for answering that way. Crush then went on to say - "Oh you are only starting"...and I wanted to say..."If you only knew" but instead I just shook my head and the show went on. It wasn't the time or place for that comment and it was easier in the moment....but after the show I talked with my sister in law and mother in law and just felt awful that I answered in that way. I know it was a loaded question but the character had no idea that this was the case. I tried to handle it the best way I could in a giant group setting, but it still bothers me. I never want to forget Max and I love him as much as I did the day he was born - but sometimes you get put on the spot and the wrong words leave your mouth.  Josiah reassured me that it was a relatively normal question that they probably ask every show, but it still bothers me. The question really made me miss Max but really put a pit in my stomach because I didn't just simply respond..."Yes, I have 2."

These milestones and moments that catch me off guard are so hard. Sometimes they come out of nowhere and sometimes I know they are ahead. I continue to navigate the best I know how. In some way...I feel that it is Max's way of reminding me that he is still around me and it helps me to think of him, love him, and long for him.

It is so easy to get caught up in the day to day and the routines. Programs like HopeKids, which we are still involved with, help us continue to remember those fun times and allow us to talk about him and think about him when we attend these events.

On this first day of school, I'm going to ask Emma how her day was and enjoy every word that she tells me because I'll only be imagining what Max's first day could have been.
No matter how hard each day is with your children, cherish them. They grow up too quickly and they have a lot to say...they can teach you so much. Enjoy them and love them.

~Allison

A letter to Max on your 5th Birthday

Dear Max,

Today would have been your fifth birthday here on Earth. You would have been graduating preschool and entering into kindergarten this year. It is hard to imagine you as a 5 year old - I only knew you as a 2 1/2 year old. I wonder how your personality would have changed and what your interests would have been. I know that you would still be following your sister everywhere and enjoying each other's company.

Emma has had a hard year without you. She's brought you up many times and told me that you came to her in a dream. Thanks for visiting. We've had some emotional moments that we've worked through with Emma this past year. She tells me that she gets mad at herself for not remembering you when she is at school or playing tennis, or even some of the past events we got to do together. Thank goodness for our pictures that help us retain and remember those wonderful memories with you. The one organization who has continued to help remind her of you is  HopeKids, who didn't turn us away when you had to leave, but rather embraced our family and has continued to support us. Every time we get to go to an event - we talk about you in some way or remember you. I am so grateful for them and what they continue to offer to our family. We have met and continue to meet such amazing families and people who volunteer their time, fund raise and support families who really need it. And we give back too. Emma even helps raise money each year with her lemonade stand (that she loves to set up with her friends and neighbors who continue to think of and honor you). Emma says she needs to cry every time she thinks of you but I'm trying to encourage her to smile. I can't always follow my own advice but the thought of you fills my heart. I miss you so much and always will.

I don't see as many butterflies anymore but maybe we are beyond that phase. I do think of you through music and have some mornings where I cry my way to work just remembering you through the lyrics of a song and then I pull myself together and move forward with the day - you would have wanted me to. I heard a song the other day that I needed to hear. It helped me resonate with missing you but also reminded me that you were here for a reason - a reason that I needed you...a reason we all needed you. You helped me learn and prioritize a lot in my life. While I wish every moment of every day that I still had you with me, I thank you for those lessons and for helping me while you were here.

The song is "Broken Halos"by Chris Stapleton. The song was inspired by people who passed away before their time. When these lyrics come up in the song, I always think of you and my eyes tear up. You taught me so much and in thinking about our time together, you continue to remind me of those lessons.

Seen my share of broken halos
Folded wings that used to fly
They've all gone wherever they go
Broken halos that used to shine

Angels come down from the heavens
Just to help us on our way
Come to teach us, then they leave us
And they find some other soul to save

It was funny because when this song came on, it immediately became a gift from you...your dad played Chris Stapleton on and off for the month that we were in the hospital with you over your birthday...when you turned two...and fought so hard to be with us a few more months - thank you. Dad is good - but he misses you too. I know he often wonders what you would be like today.

Emma's idea this year was to celebrate your 5th birthday at the local Butterfly Experience because that was one of her favorite memories with you. You both had butterflies land on you while you were there - and we had a really good day at that event...this time will be different but we are all looking forward to going. It made it really special coming from Emma.

The painting of you that is in the Beyond the Diagnosis exhibit continues to travel the country. It will be at the Albert Einstein College of Medicine in New York February 11th - March 15th. I know the spirit of the painting will help influence and move people who can make a difference. This painting is such a living gift of you and I'm so grateful that this continues to be a part of our world.

Thank you for finding a way to reach us and live on through us. I need your help some days to make that happen but somehow your spirit touches me and I find a way. I know that Emma's day off from school today (on your birthday, in the middle of a random week in February) is not a fluke...there are too many of these coincidences that you continue to have a hand on. I just know it.

We miss you every day and can't wait until our spirits reunite one day. Until then...we live in the moment and know we are one day closer.

We love you, Max.

Happy 5th Birthday to my favorite boy.

Love,
Mom