Monday, June 25, 2018

Happy 9th Birthday Noah!

Dear Noah,

Hello my sweet son. Tomorrow I will wake up, and you will be another year older. You have reached the last of the single digits. I can't believe it's been 9 whole years since I last held you. I still think about you every day, and what a journey it has been since you first made me a mother.

First of all, I have to celebrate a victory with you. A couple of victories really. Your short life has brought to light some ways in which our country really doesn't do the best that it could for its infants, and I (with your help behind the scenes surely) have worked hard to right some wrongs and we have done some really cool things. First of all, this spring, I got to see some of the results of the federal law that we passed in 2014 with the nationwide effort to make newborn screening tests faster. Representatives from 28 state labs came to Denver to share how they have been working together on this, and it blew my mind how much your story had touched their hearts and minds, and it is saving lives! It's funny - that law was passed, and then there wasn't much more for me to do, so I went on with life when lo and behold, all this activity has been happening, and it was so incredible to see it. THEN, back home in Colorado, we were able to pass a law here too earlier this month that will also change what happens to infants in this state with genetic disease or hearing loss in a big way. It makes me cry happy tears to think of it. Living this story of loss is one that I will struggle with with for the rest of my life. But then here, so many families will have the chance we would have given anything to have had access to. They will get to fight. They will have tools to help these children grow and be successful. I wish I could have bent heaven and earth to give this all to you when you were born, but I didn't know what I didn't know. I am glad the love that we have for each other could still create all of this. So, what's next? Ha! You and I make quite the team. I love you and would do anything for you. If I can help in some other way to make a big change for some special needs kiddo or other, you give me that nudge and we will keep on doing what we do.

I know last year I was proud to share that I am taking care of myself. I am going to renew that promise. This year is a big one for me. I will be turning 40, and I am trying to not ignore how I feel or what I need to be doing to be healthy. That is hard with work and kids and life. But I know you want the best for me, and I promise to reach for those things that I know I need. I have a big burden in this life, carrying grief. It is lonely and hard. No one knows what to do or say to someone like me. I am a mom of three kids. Two are here on earth with me, and one is here in spirit, and my non-traditional family isn't so easy to understand. I walk through life never getting to talk about you in most circumstances. But, I choose you. Being your mom is a privledge and honor, and I will always be proud of you. And, I will do what I must to carry the burden of grief as best as I can for you.

Finally, thank you for ALWAYS looking out for us, and especially for your siblings. Aaron and Katie both love their big brother so much. I am laughing as I am typing that. You are a baby in all your pictures, and it is hard for Katie's 3-year-old self to understand that you are her big brother when she looks at those photos. To her, you are her baby brother, and she wants to hold you and mother you accordingly. She is really getting that she has two brothers rather than just the one, and she talks of you often. Aaron loves you too, and has been so excited that your birthday is coming so we can celebrate you. You must be so proud of them. They are an absolute joy, and all the swim lessons, ballet lessons, trips to the zoo and dinosaur museum, reeces peanut butter cups and ice creams must make you smile. I love our family. No matter where you are in the universe, you are one of us, and are thought of through it all.

We are celebrating your birthday with fun. We are going to see a movie together, eat at favorite restaurants, hit a splash pad, play games. I am looking forward to a happy day of remembering one of the very best times of my life, those four precious days with you, where you lived in our arms non-stop, listening to your cute funny noises, counting fingers and toes, and falling in love with one of the most fascinating people I had ever met. Happy birthday to you, my love, from all of us. We all think about you and miss you every day.



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