I won't let go . . .

When I wake up with an incredible weight on my chest and tears flowing down my cheeks as I did this morning and so many others I pray to God for strength and courage, which eventually brings me to an early morning view of every single email I have ever received about Evan, including hotmaill messages and messages on FB that I've saved via email. I love Evan's file in my hotmail account. I never forget those who have provided so much comfort and love since we've learned of our son's diagnosis. But, on mornings such as these the reminder and being able to read messages documenting the love and support for my sweet boy and our family is a blessing.

My sweet boy is 32 weeks and 1 day today. We have an appointment on Friday with my obstetrician to determine the day that she will induce labor. Whether we induce at 40 weeks or 38, as we have discussed, the bottom line is within 6-8 weeks that day will come and too soon thereafter my boy will be in heaven. As each day passes I feel this incredible weight of pain and sadness growing making it difficult to breath at times.

I came across so many beautiful emails that reminded me of the growth and changes I have experienced through this journey. Reminders of how lucky I am to be Evan's mommy and how blessed I am to carry this beautiful boy. I am reminded of the incredible love of family and friends. I opened an email from my little sister just days after we learned of Evan's diagnosis and were still in shock. She attached a beautiful song to help explain how she felt about me. I have listened to it a hundred times this morning crying . . . smiling.

I know that Evan and I have come a very long way together and I won't let him down. I will never let him go. I will honor his life today, tomorrow and every day of my life to come . . .  until we meet again . . . I will never let you go my sweet baby boy.   

So, today I was determined to check out Macy's for more perfect little boy outfits for my little man. My daughter and I enjoyed a visit at Nana's and then the two of us were off to the mall for the first time in a while on a hunt for precious baby clothes. I started experiencing strong contractions shortly after we arrived to the mall. They were so strong at one point that they actually caused a little pain. I thought that maybe Evan got super excited to shop with momma (yea right, no one gets excited to shop with me :-) but as we were leaving I realized that maybe I should have taken it as a sign to get the heck outta dodge . . .

My daughter and I looked and looked but were struggling to find something we loved. Then we stumbled across the cutest "little brother" gift set with a onesie, pants, cap and socks on major sale and so of course we had to get that. We continued looking and then decided to take a break and head to my daughter's section. After finding lots of adorable things for her we (me especially) enjoyed sitting on a bed (section just next to hers) talking about which swimsuit to get her. An employee walked by and stopped to ask me if I knew what I was having. "A boy," I said with pleasure and then went back to talking with my daughter. The woman then asked my daughter if she was ready to meet her baby brother. My daughter responded with a rather sad "no." I got caught up in her response recognizing that what used to be a wonderfully excited "YES" had turned into a sad "no." I wondered if she too was experiencing the unbearable sadness due to the fact that meeting our sweet boy face to face means that we will soon have to say goodbye . . .

The woman was still present when I came back from my deep thought and I heard my daughter explain that her brother is sick and won't be coming home . . . the woman looked at me and I smiled with a nod while wrapping my arm around my girl. The woman then began telling my daughter that her brother would get all better and come home, she would get to feed him and change his diapers . . . I thought I was going to scream. I felt so many emotions at once from anger for her not just letting it go when my daughter said our baby was sick to a feeling I can't describe as I wondered could this stranger be right and then realizing of course not and back to extreme anger and frustration. I didn't have time to ask God to help me stay strong and keep my composure but He must have been present because before I knew it the woman was gone and my daughter and I were on our way to the register. I honestly have no idea if I said anything to end the conversation . . . it seemed as though there were seconds, minutes just completely lost as I stood there with my heart pounding holding my baby girl's hand.

After we left, my daughter asked me if she would get to feed her brother. I felt the lump of tears developing in my throat. I told her that if she wanted to come to the hospital she could rock her baby to sleep, hold him as long as she wanted, sing to him, tell him stories, and read to him. Initially, I started to tell her she would definitely get to feed him if he were hungry but realized I didn't want to make too many promises I couldn't keep. Therefore, I explained that he might not be hungry because his tummy will be full. My precious girl smiled so sweetly as she was imagining these possibilities while also understanding and recognizing what we know to be true regarding her brothers short life. I cried silently and thanked God for my beautiful babies.  

Thank you

I am grateful every day that there are many amazing people in mine and Evan's life, people who do not expect a thank you and certainly not publicly but it is important to me to acknowledge the love and support my family and I have received. I made a choice early to celebrate Evan's life. These people have helped me do so and I will forever be grateful.

With that said, I want to thank everyone who has read Evan's blog and celebrated in our sweet boy's life with us in any way, shape or form. Thank you to everyone who prays for my son and my family. Your prayers are appreciated very much. If I could thank everyone personally I certainly would love that opportunity but I've learned that Evan has touched and will continue to touch so many people that I may never have the opportunity to personally thank everyone. So please know how much you and your prayers mean to me, my son and our family.

Thank you to our wonderful family, friends and my amazing co-workers/friends who have emailed, texted, sent cards, etc. reminding us that you care and are thinking of us and for your words of love and support. It means so very much.

Thank you to all of the absolutely amazing women that I have met through my online support group, on facebook, and blogs that I have read in which I have been able to contact mother's who have had beautiful babies with the same diagnosis as our son. Thank you for helping me feel like I am not alone, for normalizing my thoughts and feelings, for the education, referrals, support, love, and encouragement you have provided. Having met all of you has been yet another beautiful blessing from God. I will forever be grateful to Evan and God for each of you and all that you have taught me about life and love.

Thank you to my sweet husband who is an amazing partner in life and love and an incredible father. Thank you for being a continuous source of strength and support for me. Thank you for expecting nothing from me and supporting me through everything. Thank you for being brave and strong, for going places with me emotionally that I never knew existed until now and for showing me a love so deep and beautiful and strong. I love you.

Thank you to our daughter for bringing me more joy than I ever knew possible. I am so grateful for her bravery and for all that she and her little brother have taught me through this journey regarding faith, hope and love. I admire her spirit and spunk and praise God each and every day for blessing my family and I with our sweet daughter. Thank you to our precious girl for always being our bright shining star on the darkest of nights and our beautiful sunshine on the dreariest of days. I love you my sweet baby.

Thank you to my beautiful mom. Thank you for your unconditional love, support, nurturing, education, and guidance now and always. Thank you for introducing me to God at a young age and for always being open to discussing my most difficult questions that have helped me continue to develop and strengthen my faith. Thank you for being an amazing role model for my sisters, other family members, friends and I. Thank you for being so strong when I've needed you to be. Thank you for loving my husband, daughter, Evan and I all completely and unconditionally. I love you.

Thank you to my dad. Thank you for always loving and supporting me. Thank you for being the best papa ever to our daughter who adores you. Thank you for your willingness always to do anything and everything that I may ask of you and for all the other many things you do for us. Thank you for being there when I needed you and for giving me the security that I need when I have felt so incredibly insecure. Thank you for loving us and for doing so unconditionally. I love you.

Thank you to my big sister. You have modeled such incredible strength and courage for me over the years and have taught me so much about resiliency. Thank you. Thank you for being a mini me of our mom. Thank you for always helping me feel safe talking to about anything. Thank you for sharing with me as you learn and grow in your relationship with God and for guiding me . . . never pushing me to understand more and grow deeper in my own faith. Thank you for your unconditional love, for being my advocate when I've needed one, for all that you do for my family, and for being the best aunt and role model for our daughter. I love you.

Thank you to my little sister. You're 6 years younger than I am and once again I have experienced that our age difference means nothing ... I am so unbelievably encouraged by your strength and bravery. Thank you for that. Thank you for asking me about Evan. Thank you for talking about him and for making him a part of our family. Thank you for the incredible support you have given to my husband, daughter and I. Thank you for being an amazing sister, friend and aunt! Thank you to your fiance, my brother, our wonderful friend who has shown so much love and compassion for my family and I during this journey. Thank you to your precious son. We are all so lucky to have him in our lives. We are so grateful that our daughter has found strength through her love and beautiful relationship with your boy. I love you guys.

Thank you to my sister-in-law who not only became my sister when I married her brother but who has also become such a wonderful friend. Thank you for your support, for being someone I can turn to always. Thank you for sharing and expressing your love for Evan. I love you and I am so grateful that you are my sister and my friend.

Thank you to my aunt. Sheila, thank you for being someone that I could talk to, trust and confide in when I felt the most vulnerable and afraid. Thank you for your love and support and for being there for my family and I always. Thank you for your willingness and interest to help make our sweet boy's birthday memorable. I realize that there may be circumstances beyond our control but having your commitment and ongoing, constant support is so incredibly meaningful. I love you.

Thank you to my dear friend. Kelly, thank you for your friendship, for being someone I can confide in and trust always. Thank you for never backing down. From the moment you learned that we had received news about our son you never wavered. You have once again shown me the meaning of true friendship. Thank you for your phone calls, for visiting, for choosing to share in this journey with my family and I and for your unbelievable support. Thank you for ongoing education, referrals and encouragement. Thank you for being strong and brave as I share my biggest fears/worries with you and for laughing and chatting with me about my joys. You have been a beautiful friend to me always and I thank you so very much. I love you.

Thank you to my precious boy. Sweet, sweet baby boy, thank you! You have proven medical professionals and research wrong when you have responded to my voice and my touch while in my womb. Thank you! Thank you for being so strong. Thank you for changing my life. You are a blessing and tremendous joy in my life. I will try for the rest of my life to find the words to express how incredibly grateful I am for you. I love you Evan Matthew. My love will follow you always.

Praise God.

I woke up this morning to a very active little boy. I can't tell you how wonderful that is. Yesterday both of my children decided they would give me a little trouble. :-) My son was extremely active at 4:44am yesterday morning but after waking up at 7am I realized that I hadn't felt him since. My daughter woke up at 8am and after a few snuggles immediately decided to give me a dose of my own medicine by acting just like me . . . over analyzing and questioning everything I said or did. Little stinker! Then 9am . . . still nothing from my little man . . . more "yes it is" and "no it's not" and "that's not right" from my daughter . . . 10am . . . followed by lots of OJ and questioning was that a kick? By the time 11am rolled around my little Evan decided to wake up . . . FINALLY! I expressed lots of excitement and my daughter and I breathed a sigh of relief (me because of Evan's activity and her because mommy wasn't so intense any more :-).

I shared the fun (lots of sarcasm here) Saturday morning events I was experiencing with my children when I talked to my mom. I really liked her explanation for it. She said, "Evan just slept in and then decided to chill awhile since mommy was busy with big sis." Followed by reminding me to take a deep breath. :-)

Those calming and relaxing deep breaths and other self-care activities have been so important. My husband and I are so very lucky to have an amazing, extremely comical, bright spirited, energetic, loving, and fun filled little girl to help us enjoy every moment with her and Evan. I must say how much I appreciate the magic my little four year old has and her ability to bring sunshine and laughter to every single day.

The remainder of the day yesterday included a ton of help from my mom who worked outside in the heat making our yard and my car beautiful, watching my daughter have a blast with her Nana and a water hose, having an opportunity to get much needed cleaning done, talking to my big sis about some very special things she has done for Rory, our daughter and I in honor of Evan, and feeling my boy kicking, rolling, and tumbling up a storm. My husband made it home from work just in time to eat a warmed up dinner and get hugs and kisses before watching my daughter, son and I fall asleep on the couch together. All in all . . . it was a good day.

On Friday my husband and I attended an appointment with my regular obstetrician. I like my doctor so much and I am so thankful she wants to deliver my boy and do (has done) whatever she can to help us. It was a good appointment for both my husband and I. We will be meeting with her again in two weeks to discuss plans and a date for inducing labor . . . to identify the date our sweet baby boy will be born and we will hold him in our arms.

30 weeks!

Today marks 30 weeks that Evan and I have been growing together. I always thought about Evan and how much he was growing and changing so much over these past 30 weeks. While he certainly has grown and changed a great deal, I think it may be me that has grown and changed the most thanks to my amazing little boy.

Sunday my sister, Abbey, took pictures of Evan and I with my family at Creve Couer park. She did an absolutely amazing job and I can't wait to share a few of those here. While I love every picture and every moment of that (incredibly hot :-) evening at the park taking pictures with my family, the fact that my sister called me Sunday morning sharing her idea and desire to take the pictures . . . to do this incredibly beautiful thing for me, my son and my family . . . meant so much to me. Being able to have my husband, daughter, mom, sister, her fiance and their sweet boy with me while we took pictures was very special.
Yesterday was a big day of appointments including an opportunity to see Evan, talk about our thoughts and feelings and prepare and plan for his birth. My husband, mom and I attended each of the appointments together. We had experienced an amazing ultrasound with a fantastic stenographer prior to our appointment yesterday so my expectations and hopes were high. Things did not go as I had hoped with the stenographer during the ultrasound yesterday. However, I realized that I could share all of that (that which does not matter and I will not allow to bother me any longer) here or I could share all of the incredibly amazing experiences we had and things we learned that we will remember and be grateful for forever. I opted for sharing the positive because that will always outweigh the negative for me any day.

Evan weighs 2 lbs 14 oz! He has grown a pound and a half since our last ultrasound on June 6th. My big boy!! :-) He is so active and so strong. He has the most beautiful little face, arms, hands, tummy, legs, and feet. We were able to get pictures of him on a cd again and one printed picture of his beautiful face. I just want to and can't wait to kiss his little face and body all over. I am so incredibly hopeful that we will see him kick with all the might he is kicking with now. The doctors continue to confirm his diagnosis although every time I look to see any signs of anen I find that I cannot see it at all. Of course I'm not a doctor but I also believe I don't see it because I'm his mother and while I think I'm looking for it the truth is I really can't keep my eyes off his beautiful eyes, nose, mouth, chin, and arms/hands that are resting behind his head. His heartbeat sounded beautiful and strong. I fell in deeper love with my son all over again yesterday.

We met an amazing woman who took all the time we needed to talk to us about our thoughts and feelings, share information about what she and the heart prints program can provide and provided us the empathy, understanding, validation and support we needed. She will provide advocacy and support for us now, until Evan is born and during our stay. In addition, she will be a resource for us after we have been discharged. She introduced us to another amazing woman who also provided support and offered her ongoing services and support to us. Amazing women doing amazing work. We are grateful for them.

We had the opportunity to meet with an talk to a neonatologist who answered our questions and provided a great deal of information that will allow my husband and I to make incredibly important decisions about Evan's care. He also provided information that will help us feel empowered during our stay as did the incredible NICU nurse who talked with us and gave us a tour of the NICU. We learned about an amazing room they will have available to us that appears much more like a family room than a hospital room. There are no hospital beds, medical devices, etc. A beautifully decorated room with comfortable seating, lighting, lots of books, toys and games and a pull out couch. A room where my husband, daughter, son and I can spend time together as a family. This room was the last stop in our busy day. It was a perfect way for us to end our day with a nurse that provided genuine comfort and support. I can't begin to express how incredibly grateful I am for this room. For a beautiful room where my daughter can feel safe and comfortable and our family can be together sharing precious time and creating precious memories.

Evan and I :-)

My husband took a picture of Evan and I on a beautiful morning before a day of family fun.
28 weeks and 4 days :-)

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!!). :-)