We're entering the time when you started to be so very sick last year. May 21st marked the beginning of the end. I will never forget the evening you stopped breathing in your sleep. I knew it was serious. I was terrified. For ten years, I had been so very afraid to lose you. So scared of losing you, I would do anything to keep you. When people was wondering how we did it, they didn't realize that the fear of losing you is a power stronger than life. It kept me going 24 hours a day because the thought of having to live even a second without you was unbearable. It was a big black hole with nothing in it. To keep you alive was a force so strong within me, tied to my bones, tied to my heart. You can call it love, you can call it survival, you can call it the force we were together.
I am amazed I am still standing. I am amazed I have been able to find joy, laughter, love and strength in the middle of missing and loving you so very much. Maybe you gave me some of that strength you were so very known for? You sure showed me what it means to love life, and do the best of it, no matter what your circumstances are. I should not have been surprised when the doctors told us that you had no organs to donate, not even your eye lids, since you used up every little bit of your body. You gave life everything you had. When people gave you three years, you decided to show the world you could live against all odds.
How I miss your power. How I miss your strength. How I miss your beautiful face. I remember last Memorial Day Weekend, and thinking the end was nearing. I remember sitting with a good friend on the hospital couch late on Saturday evening telling her this might be it. I wasn't sure we would be able to take you home again. I didn't want to speak the words out loud, but I sure knew you. I sure knew what was at stake.
Us in the PICU a year ago. Anyone who got to squeeze those cheeks were lucky!
And having lost the most precious thing in life, it gives you perspective. A unique perspective on life that comes with a high price tag. The perspective of loss. Anyone who has suffered loss knows sweating the small stuff is just not worth it, that kindness always wins, and to stay true to yourself. That Jacob, I promise to keep close to my heart, as I put one foot in front of the next, walking forward, making the time and distance between holding you in my arms and today, a little further apart for every moment, every day without you here on earth.
Sweet Jacob, I love you to the moon and back.
Always in my heart,