Month one

At this time exactly one month ago I was sitting on a chair with you in my arms crying the heart broken tears of a mother that has lost a child, a part of their heart and soul. You were wrapped up in your Hugginz blanket and I stroked your hair, your face, your eyebrows as I tried to imprint every last thing about you in my mind. In my heart. I kissed your soft blonde hair, your chubby cheeks, trying to shower you with as much love as possible. Even though you were no longer Earth side I know you were still with us, watching us love the body that was left behind.

Our lives changed exactly one month ago. You left us and it's not fair. Nothing about your life was fair or easy for you. But your strong determination gave us proof that you were imperfectly perfect. I still find it really hard sometimes in the evening when I open the fridge and notice that your medications aren't there. That I do not have to spend 20 minutes a night making up formula for your feedings for the next 24 hours. That I don't have to crush pills and draw out medications to try and help you get over whatever illness you had, the seizure medications that never worked out perfectly for longer then a few weeks.

Your daddy finished the box that will now be your home and it's beautiful. You're tucked inside its wooden walls that have been infused with love (and possibly some of his tears) sitting on the kitchen table. Some of your ashes are in a plastic baggie (we're sorry for that but daddy will be making something soon!) and stored in the extra Cody bear that we got for you. You're always with us darling. You were a part of our family and you forever will be. I kiss you every morning as I whisper a good morning Phoenix just like I kiss you every evening as I head to bed with a I love you Phoenix, good night.

Sleep is hard. For the first week it came easily. I would just lay in bed with the Cody bear that you so very much loved clutched tightly to my chest and close my eyes. I would quickly slip into slumber. But now I find it hard to get there. I lay in bed and my mind races non-stop. A continued loop of what-if. What could be different. What would you be doing right now. How do I deal with this giant gaping hole in my heart. I try not to slip into that dark place, the one that my mind can easily fall into. That place where I know he misses us-He's scared and all alone-Was there ever a time that I could have hugged him/loved him more/harder-He should have had more hugs and kisses. It's not a good place to go and I hate it. I know you aren't alone. We loved you so much and so hard that if love could heal you, you would still be here walking around and causing the same kind of troubles that your older sister got into when she was your age. You never went a day without love. I need to remember that, but sometimes it's just so hard.

We're almost done with planning your memorial/celebration of life. That's going to be so hard. Time passes so, so quickly and I hate it. We had 15 months and 18 days with you. It's not fair. It wasn't enough time. It's what we got but it just wasn't enough. How many more hugs and kisses could you have had? I never wanted to co-sleep, yet you spent more time in our bed then not. I don't regret it. I miss the smell of your hair as your head was up on my chest nestled close. I miss you. I miss you so much that sometimes I feel like throwing up. There is still a small pile of your clothes in the living room I just can't figure out how to add them to the rest of your stuff that's behind the closed door to your room. Your rocker is still beside the cough with one of your Lulujo blankets, your duck and your head pillow. I'm not sure how long that will stay there for, but it's there. You loved that chair.

We miss you buddy. We will miss you for the rest of our lives. I promise that we're happy and that we all love each other, that we all miss you and wish you were here with us. It's not easy without you. It wasn't always easy with you either, but we loved you. We learned to adjust to whatever was happening with you. It became a new routine, the new normal for our family. Every time you and I went to BCCH something new happened or changed. So our lives were constantly learning a new normal. We adapted and adjusted. We loved. We cherished. We laughed. God, how we laughed at your crazy antics and goofy streak. If you had grown up with us, I just know you would have been the clown, no matter what life threw at you. You laughed. You were so proud of everything. WE were so proud of everything that you could do. We were sad also at the things that you couldn't do, but we were proud of you. 

Learning this new normal is hard. It's ugly. It's soul-crushingly awful sometimes. It's not that your siblings are any more or less crazier than normal. It's not that me and daddy aren't getting along. It's just you're not here. I know you're with us in spirit, looking down on us. But it's not the same. Nothing will ever be the same. And that's something that we need to learn. Nothing. Is. The. Same. But like the previous months before, we will learn. We will adapt. We will survive. Because we are strong. We love. We care.

Time keeps moving on but you left a mark on so many peoples lives. People all over. Family. Friends. Strangers. Doctors. Therapists. Support workers. Ambulance workers. Daddy's co-workers. A little mark on so many people. Not many can boast that knowledge. I hope you're proud of all that you accomplished during your time Earth side my darling. I hope that you know that you are loved. Every day. And that we're happy (some of the time). And that we're learning to be without you here with us.

I found this quote not long after you gained your angel wings: "...In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night..."  I love that quote. It fills me with a sense of peace and comfort. Because that's where you are my darling; laughing down at us from your bright perch in the stars. Laugh hard buddy. Laugh. Play. Dance. Do everything that your little body just couldn't do while you were here.

I promise you, my sweet little boy. We will be happy again. And you will NEVER be forgotten. And that we will be alright (maybe not today or even next week) but we will be alright.