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
