I have to admit this is hard. .. hard to look at pictures of kids who are growing and developing perfectly. Getting through milestones Max should be at. I can't help but be jealous but I'm grateful for each of you and happy for your kids. I just find it hard to see what Max won't get to do. I'm trying to turn those thoughts around but it's been hard.
However the outpouring of love, support, prayers and kindness has been amazing. I knew we had a strong support system but this just goes beyond what I ever thought possible. I appreciate all of it. We couldn't get through this. .. comprehend this. .. without the support. It is why we decided to be open about this. Not to gain everyone's sympathy but to help raise awareness and to remind those around us that life is precious and to be thankful for every moment you have.
Tonight was tough getting home. Max gets so irritable at times and needs to be held to calm down. Once we made it home from the long car ride he sat on my lap and just watched Emma. He adores her so much. He lights up when he sees her and laughs at what she does. She's such a good sister to him and loves him unconditionally. We got some amazing pictures of the two of them. Just made my heart melt. It completely turned his irritability around. He wants to be happy but just aches.
I love my little boy so much. He's just the sweetest. Everyone tells us he has the most piercing blue eyes. It's those little laughs and smiles that I'm holding onto. And pictures. .. Lots of pictures. He's still able to do a lot and I know it will get harder so I'm grateful for what we have now. I'm reminding myself to live in the moment and not dwell on the future.
And I'm still believing in miracles.