29 weeks and 1 day

I love you Evan Matthew!! You take my breath away every day. I am so incredibly grateful for the way you have and continue to change our lives. I have always valued pregnancy and the amazing creation of a beautiful child over 40 weeks (give or take). I have always viewed a child a child from the moment of conception. However, it wasn't until Evan that I stopped dreaming of our future and learned how precious every single second is with him right now. It was after learning of his diagnosis and overcoming the shock  that I realized how incredibly significant these moments are and how blessed I am to be experiencing my son's magic and amazing spirit on the closest most intimate level right now.

I used to talk to my daughter about "when" she was going to be a big sister since becoming pregnant with Evan never realizing that she IS a big sister and has been from day one. After I had explained my misguidance to her several weeks ago she said to me, "Momma, I'm so glad to be Evan's big sister. I'm so happy to be his sister right now" and gave him a kiss. I'm so proud of her bravery and I am cautious every single day to make every effort not to overwhelm her.

Knowing how incredibly and unbelievably difficult it is for me to understand and cope with Evan's fate, I am grateful for my daughter's current ability to cope with and understand her brother's fate. She said to me weeks ago that she thinks that her brother's head will be crooked. She said she wasn't sure if his body would be but she's pretty sure that his head will be. We have never described anencephaly to her but have informed her that her brother is very ill and will not survive when the doctors inform us that it is time for him to "come out" (I know, I know, I've been looking for a better expression.). I asked my daughter where she learned this, who had told her this. She informed me that her grandma did, referring to one of her beautiful guardian angels. Take this for what you will, believe what you want. As for me, I was overcome by peace and comfort knowing that my husband, my family and I are not alone in helping my daughter understand and cope with this incredibly difficult journey. My daughter then told me it is ok that his head is crooked because we will just hug him and say goodbye and he'll be ok. She's amazing. God's love and continuous resources of love, support, strength, and courage are amazing.

Thinking of the day I will have to let Evan go from my arms is unbearable. In fact, I try extremely hard not to think about it. I pray for strength and courage when that day comes but I try not to think about it for all it does is bring me the most unbearable pain and sadness. Not thinking about it is challenging, to say the least. Therefore, I have found one thing that has helped me and that is focusing on a future of remembering and memorializing my beautiful son. My mom (thank you, Mom!!) has found two amazing resources. One that will allow for us to memorialize Evan and celebrate his life with others who have lost an infant by purchasing a beautiful brick that will be displayed year round and celebrating in a memorial service once a year. Another resource offers a variety of services but also has an annual marathon and memorial service to honor those who have lost a child. I am also hoping to be able to register for a women's retreat that is for mother's who have lost a child, which is a resource my supervisor provided. With all of these resources just around the corner after Evan's birthday I am hopeful that I will be able to find the strength and courage I will so desperately desire to give my family all that they deserve from me.

I am so anxious to see my little man on the 11th. Just 4-5 more days (depending on how you count ... I'm going with only four more full days!!). :-)