I know I sound like a broken record but I can’t believe you are not here with me anymore. I keep thinking about our life together and I get so overwhelmed. I loved it Jakey. Every minute of it. And I don’t quite believe our life here is over. You were doing so well. And I really felt like we hit our groove. When you first came out of the hospital on May 17, 2007, I was so scared. I wasn’t sure how to be your mommy any more. The 4 months in the hospital robbed me of that. It took me a while to feel confident and get my mommy instinct back in action. We used to go back to see Dr. Yaman every 4-6 weeks. I need to let him know you are gone, I haven’t yet. He will be among the many that are upset. He too worked very hard for you. Anyways, at first Mommy and Daddy were so in the fog – we were figuring out EI and just meeting Karen and Xavier, Linda and Elisa (another person I just realized I haven’t told yet). Everything was new and we were doing our best to understand. We were still in a weird cross of optimism and denial. Not sure what had happened, not really believing it and hoping we would wake up one day and you would be healthy. It took us a while to really go from denial to acceptance. And then another stretch of time to really become pro-active.
There were so many ups and downs. And devastating reports – from the subdural hematoma to the dislocation/sublexation of your hips. And then the liver, the osteopenia, the protein in your urine (which try as I may no one would deal with). But Jakey, we got good at it. We found doctors and a hospital that fit for us. MGH understood us. They listened when I told them about how you respond to anesthesia, they understood our aversion to hospital stays, they worked with us to get you off meds. They let Ethan, Daddy and I all stay at the hospital after your liver biopsy. They understood us. We had a team – a team that was only going to get bigger and better with the addition of Dr. Eichler and Coordinated Care. I knew how to handle doctors, demand what we needed for you, who to call, what to say. Daddy knew it too – he could talk anyone through finding a vein and he could demand people pay attention to the issue at hand, and not anything else people wanted to fix. And we were on our way to answers. We knew they wouldn’t be great – in fact, we thought we were ready. I thought I was ready even when I read about the outcomes – that most kids don’t live past five with the types of leukodystrophies that we were looking at, or that the body systems regress. I thought I was ready, but I am not. But now we still don’t have a definitive answer and we don’t have you.
I just don’t get it. You were doing so well at school. I re-read your notes from your last week. On November 19th you had your best day ever. Beth said you were playing that whole week doing so great. And even Stephanie wrote a note on that day about how well you ate. You ate without me. Beth fed you. And you ate it all. That day we went to the Connection. Heather talked about how great you looked. And then the femur broke at 2:30 in the morning. Something we knew was up since November 6th – on the way to NYC. Just so much information in my head but it still did no good.
We were so adjusted to our lives. We had Cait after school some days to free me up. We were planning our trips for your birthday – NYC for your 5th. Disney in the summer. A long drive but another fun family adventure. We were so good at making a good life for all of us – adjusting along the way to what we needed to do for you. We were good at it – and now it doesn’t matter. I had also started to feel so supported – and began to find a good balance between it all. I could advocate for you, raise awareness and have fun doing it. People always asked me how I stayed positive which I never understood – how could I not? I had you. You didn’t ask to be unhealthy so how could I ever disrespect you like that? I always hated the pity parties people had/have. Anyways, we finally were adjusted. I knew how to be a special needs mom. And now it doesn’t matter. Now I have to go through it all over again. I have to get used to being that mom who lost her son. I don’t want to Jakey. I don’t want to get used to it. I don’t want it to be true.
Sometimes when I am feeling stronger I think that all this was coming together. I remember how amazing you were – how up until the last-minute you fought. Your body was failing you – and if I am honest and look back at 2010 it was tough – liver, hips, bones, kidneys, auditory neuropathy and the ever-present seizures. But you fought through it – you also got off clobazam, you were so alert, you beared weight, you swiped at toys with Xavier, you stood in the stander and walked on the treadmill, you were tracking again and you worked so damn hard with everyone. People may think that you were deteriorating but you weren’t – actually the opposite – as your body gave you challenges you fought through it and did better. So many people at the wake, kept saying that – “I don’t get it, he was doing so good”. You had the worst year and the best year all in one. And then it was over. How did that happen?
And then I think about all the things that in the back of my subconscious I was prepared for. Not really but it wasn’t a shock. The walk I took that made me realize where I wanted you buried. The book I read about Hunter and his mom and the tears I shed. The ideas of Heaven. The tattoo of your name in Chinese – grateful, to overcome – the knowledge that when this happened I would put your dates on it. All of the things I had already thought about. Were you slowly getting me ready? Is this the plan? On my strong days, I belive it – I believe everything happens for a reason, that everything gets us to wear we are supposed to be. I just wish this wasn’t our path. I wish our path was like the countless other intact families. But Jakey, you will always be 25% of our family. We will remain a family of four. A little atypical but it is how we are. I love you to pieces. I hope you are happy. XOXOOX
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