Guilt

Hi Sweetheart,

How are you today? Mommy was so tired yesterday that I slept with your big brother from 9:30 p.m.-7:30 a.m. Remember I told you yesterday that I went to get my blood drawn to test for Leigh's Disease. The counselor said the results won't come back for another 2.5 weeks. I gave her my date of when I leave the country, and if the results come back early to give me a call. I know we still need to meet with the Geneticist to go through the result because of how complicated it is, but I still would like to get a "Yes" or "No" from them as soon as possible. Mommy worries about your big brother, too. Though it's unlikely that he will develop symptoms as he's already 3, but Mitochondrial Diseases can have a late-onset as well. Can you pray for us and make sure we're ok?

Mommy told you yesterday that sometimes I questioned my decision about you. It was a very emotional decision and it was very difficult to make. But when I read about how other babies with Leigh's Disease or Mitochondrial Disease can live until the age of 2 or 3 or even 14, I wonder if we have made the wrong decision. I know deep down we're right, especially, with all the objective facts in front of us. But I just can't stop thinking about it. The decision makes me feel like I am choosing your big brother over you. I know that's not it, because I don't want you to suffer. But now that you're in heaven, our lives go back to somewhat normal. No more long drives to the hospital everyday, no more worrying about how to take care of you if you're home, no more worrying about when we have to go to the ER once again if you get sick, no more worrying about all of the inconveniences that would happen, if were you home. Oh honey, that sounds so selfish. That is definitely not how Mommy and Daddy feel when we let you go. We want you to be happy. We want you to be free from tubes and tapes and needle-poking. We want you not to suffer. But, that guilt is still there. It's eating me up whenever I read a story about another baby who lives longer than you. I should be happy for them, and not feeling like this. When will this guilt go away?

Mommy made a photobook of you yesterday. Mother's Day will be here soon, and there are coupons for free photobooks. I've been thinking about making one for a while, just never actually feel like doing it. Since the coupon expired yesterday, I made three books: one for me, one for Ah Po and one for Grandma. I know they will be sad when they see pictures of you, but I want them to have it because they love you so much.

Daddy's friend, Auntie Shelley, has offered to made a quilt out of your clothes. I think that's a great idea! Thanks Auntie Shelley! Mommy will pack up some of your clothes and then send to her. You have clothes that you wear all the time, and those would make a nice momento because I have pictures of your wearing the same sleeper and sleepsack.

Mommy will try to clean up the house a little today. Got a lot of laundry to do and the house is a mess. Today will be a day that I am not going anywhere. It's time to chill and relax. Mommy will come see you tomorrow, ok?

Take care baby.


Love you,
Mommy