I woke before anyone this morning and sat down to watch Joel Osteen. Today's message was about connecting yourself to the right people. During his ministry, Mr. Osteen used an analogy about knowing when you are connecting yourself with the right people (people who support you, your dream, your goals, etc.). He said that you will know that you are when you feel your baby inside you kick, push, etc. I found it so interesting how literally I was taking this analogy. It was a good message for anyone but it seemed to be so fitting for me as well. I have realized how important it is for me right now to surround myself with people who will allow me and want me to celebrate my son in their presence. I know that illness and death (or the coming of it I guess I should say) are two very difficult subjects to think and talk about and everyone handles it differently. Of course, I respect that. However, I am celebrating Evan's life and I am so appreciative of my loved ones who celebrate his life with me.
I become more fearful by the day of the upcoming appointments my husband and I will attend due to the questions the doctors and other hospital professionals will have about our wishes for our son after he passes. I keep thinking about how important planning will be but it is overcome by the desire to tell everyone to just stop, stop talking, stop thinking about the end ... I want to say to them . . . if you don't have anything to say about his life then do not speak to me because I do not want to discuss his death right now. Again, I know this is reality and important but it's just the way I feel now.
Back to the message this morning . . . I was listening to Mr. Osteen and thought again about how important it will be for me to remember the people who help me celebrate my son's life. I will need to remember these people, their love and support when I'm in these appointments and planning for our future. I thought about how I truly believe Evan knows when we are around people who support us and celebrate his life because I feel him becoming active and joyful. I thought about how true Mr. Osteen's message is.
I used to fear strangers asking me about my pregnancy. Now, I embrace it. Yesterday, my mom, my daughter and I went to get afternoon pedicures (mom's treat!). It was my daughter's first pedicure!! Mine was so relaxing I kept falling asleep around 8pm last night! While we were in the nail salon the ladies were asking about my daughter, her upcoming birthday party and my son. One lady asked if I knew what I was having. I told her a boy and she replied "oh perfect." I sat there relaxing and thinking about this response. She is so right. It is perfect! I will have forever been blessed with a beautiful daughter and amazing son and nothing will ever take that away from me. Hearing her excitement about my pregnancy, about my Evan, made me feel so appreciative.

What's in a name?

Rory and I chose a name for our son and I'd like to share the meaning of his name. Evan is our son's first name, which means "young warrior" and "God is gracious." His middle name is Matthew, which means "gift of God." I also happen to LOVE the way that my daughter says Matthew. It is the cutest pronunciation. :-)

This week I woke up one morning to a beautiful picture of a new mother and her newborn. It was so wonderful to see the her (friend) so happy holding her beautiful baby. It warmed my heart. I thought about how at the moment the picture was taken in the hospital everything had just begun for her son and her family. It was also in that moment that I realized, one again, that when my son is born it will be the end of his sweet little life and our physical connection to him. Obviously, I have thought of this multiple times but to think of it again after becoming even more bonded and connected with him over the past weeks since learning of his diagnosis and deciding to carry made it unbearable. I realized the unbelievable emotional and cognitive changes I have experienced in just 3 weeks time. I went from shock and torment to an extremely brief period of trying to separate myself from my son, followed by acceptance that this would never be possible for me. Next, and after choosing to carry my son to term I considered the appropriateness of inducing a little early after talking to my doctor who suggested this as a possibility. And now here I am today . . . I cannot for the life of me envision me going to the hospital to willingly have this baby. I cannot express what having him inside my womb, knowing he's comfortable and safe (for now) and feeling him move means to me. I am so terribly frightened of the day that he decides to come naturally or my doctors tell me they need to induce for this or that. I realize that this is the day that I will lose my physical connection with my son within minutes . . . hours at most. And then a very special friend and amazing woman, Cori, who I hadn't spoken to about this bad day I was having sent me this scripture: "When I am afraid, I will trust in You. In God, whose word I praise, in God I trust; I will not be afraid." ~ Psalm 56:3-4.
I believe God is with me, my son and my family. He is speaking to me through the amazing family and friends that have been so unbelievably supportive and loving and the warmth and increased peace/comfort that I feel inside. There is nothing I cannot handle, I cannot survive when He is with me. To everyone praying for my son, my family and I . . . THANK YOU!! Thank you from the bottom of my heart. I cannot express how very much your prayers mean to me. They are powerful and they are so very much appreciated. God Bless.

I have been thinking about all of the amazing things that my daughter and I do together, all of the amazing things that we create together and the fun we have doing it. I am not the most crafty of women but I sure do love trying my best to teach her (and myself) something new while creating something special simply because we made it together (imperfections and all). I've been waking up at night the past few nights thinking about how desperately I want to make something special for my son. Something soft, cuddly, comfortable and made by me, his mom. Then I realized that this very special project will require a great deal of guidance from a very special lady, my mom. :-) I haven't asked her yet but that is one of the many things that makes my mom so amazing . . . she would do anything for me (her children) and her grandchildren. I also woke up this morning to an email from my little sister who I believe completely read my mind, my heart because she asked to knit a cap for our son. She will be learning how to knit in order to do this for her nephew. Have I mentioned how amazing my family is? I was so moved and felt so much love and understanding from her that was much needed this morning as I struggled with adjusting to several hours of lost sleep last night. I'm grateful for being able to recognize the things that I can do with and for my son now while he rests peacefully in my womb. I look forward to learning more suggestions that the amazing women in my support group may have also.
One last thought . . . I believe writing these posts must bring some kind of ultimate (and much needed) peace and relaxation for me because my son's precious movements increase significantly and feel so rewarding and beautiful as I sit hear typing my entries.  

No more "doom and gloom" for us!

I wasn't sure how I was going to respond to the first person that asked me about my pregnancy. It was inevitable and I knew this. I feared that I would have an overwhelming desire or expectation to explain everything. I figured everyone would know that there was something wrong and I had to assure them that although there is, both myself and my son will be ok (I prayed this would be true). I thought about all of the children I have worked with who have experienced traumatic events and have shared similar fears . . . avoid it, avoid everyone so I don't have to talk about it . . . everyone knows everything terrible about me/my situation just by looking at me . . . everyone will pity me (yuck!) . . . and on and on. I thought about what I have shared with them and the incredible strength and courage they have shown and how they have grown throughout treatment. I realized that I too have a right not to live in this "doom and gloom" . . . that I could quite possibly survive this trial and become closer to God, my son, Rory, my daughter, and my family every step of the way. It felt like the excitement and overwhelming happiness that was once my pregnancy was taken from me the day we found out about our son's fatal diagnosis. I decided that I was going to take it back. I know it doesn't (and hasn't) happen(ed) over night and I certainly don't expect it to but with God's help and the continued support of my family and friends I will release the "doom and gloom" and embrace every moment with my son for as long as I have left with him here on earth. This is the day I decided to start creating my blog, started journaling in my pregnancy journal again, and talked to my husband about a name for our son.
Shortly after, a client, her mother and grandmother asked me how far along I am and if I knew what I was having. They were genuine and excited to learn. I proudly smiled and informed them that I am 22 weeks and I am having a boy, a sweet baby boy. It felt wonderful and I was so grateful for that moment.

Happy Moment with My Little Man . . .

I returned to work on the 16th. I am so lucky to work with such caring, supportive, lovely people. It was a difficult week back but no more so than I had expected. I have been feeling my son moving about for several weeks. I have continued to feel little taps from my little man and on one occasion two days before our ultrasound and during my daughter's dance class he really gave me three big budges. It was wonderful and I embrace every single one of his movements I feel.
On Tuesday the 17th I met with my supervisor for an hour. (Luckily, I meet with my supervisor every week for one hour. Usually, we discuss my client's and other work related issues but I also have the luxury of having a little bit of my own therapy with a very awesome therapist, my supervisor. :-) So, on this day the conversation was primarily about my son, my thoughts, feelings, adjustment to work, etc. I realized that time was almost up and I needed to discuss work related issues. Just as I changed the subject I felt my little man moving actively inside me. He kept moving and moving and all I could do was giggle a little and smile. I realized at that moment that he is EXACTLY like his big sister. He LOVES attention!! :-)  Since then, I've noticed that every time I talk about him I feel him moving about. Coincidence? I think not!

Faith, Hope and Love . . .

We were given two options . . . terminate or carry. I wish I could say that I knew instantly that I was going to carry our son to term. I didn't. I didn't know anything for certain except one very important thing . . . While I have relied on my faith and reached out to God through prayer in good times and bad so many times before, I knew for certain if there was ever a time I needed Him most it was now. So, with no other answers and so much confusion and sadness I began to pray asking for guidance, comfort, peace, and strength. There were so many questions, so many unknowns. I never blamed God but I do remember during those first few days many silent screams and times that I begged Him for an answer. Why God? Why our little boy? Why my family? Why is our baby girl's little brother never going to come home? I didn't know the answer those several days after learning of his diagnosis and I don't claim to know the answer fully now but what I do know is that my little boy is teaching me to love even deeper and live even stronger than I ever knew possible. He is changing my life and has been such a positive influence on me. I know that his life has so much purpose and I believe with all of my heart that his short little life will have a tremendous positive impact on so many lives. My husband and I explored both options thinking of our little boy (is he experiencing pain? will he experience pain when he is born?), our daughter, each other and our families. We searched for an answer until we didn't . . . I prayed for guidance . . . direction throughout our search for understanding. I remember the moment I realized that I would carry our son. I remember feeling so scared and so full of love. I knew I would find strength through God. I hoped for peace (for our son, my husband, daughter, myself and our family) and understanding and above all I knew and could never deny that I had fallen deeply in love with my son long before we knew of his diagnosis. I knew that his imperfect condition was a very small matter compared to how perfect he is and will always be to me.
"And now these three remain: faith, hope and love. But the greatest of these is love."  ~ 1 Corinthians 13

Our son's fatal diagnosis . . .

Rory and I have an amazing daughter who will be four at the end of this month. We were so very excited in early January 2011 when we learned that we were going to have another child. After having a miscarriage in September 2010 my doctors wanted to be cautious so I had several lab tests to ensure that the appropriate levels (hcg and progesterone) were rising. Of course I was ecstatic every time I received the call that things were progressing well. The nurses were so happy to deliver the news "Congratulations your levels more than doubled!!" They had no idea how truly ecstatic I was to receive this news (well, maybe the squeals gave me away :-).  After a few weeks I talked myself into relaxing a little and enjoying the wonderful news. I was cautious about everything and wanted to ensure we had another healthy pregnancy and baby. We had two ultrasounds early in the pregnancy. One between 6 and 7 weeks and another at 9 weeks. We were lucky to hear our baby's heartbeat during the first ultrasound as the doctor informed us that if we had come earlier that day we may not have heard it because it had just become audible with the medical technology she had available. I had gone in to talk to the doctor about a nasty sinus infection one day later and was told that while the heart rate was normal for a baby at 7 weeks the doctor just wanted to be sure that the rate was increasing. So approximately two weeks later and after a lot of self talk about how everything was going to be a-ok I went back in to discover our baby's heart rate increased and was perfectly normal. It was a beautiful day. Of course, like many pregnant women I began getting slightly nervous and counting down the days until my next appt. (12 week check up). Everything went very well. During our next appt. (16 weeks) the doctor struggled a little with finding our little one's heartbeat in the exam room. He stated that he would just send me over for an ultrasound if he couldn't pick it up but assured me not to worry. I had started crying anyway and the hair on the sides of my head was soaked. The doctor provided so much comfort and just as he had suspected he found our child's heartbeat within seconds of me losing control. His heart rate and the beautiful sound of his heart beat were perfect. All was right in the world again. That is until our next appt and 20 week ultrasound. I had tossed around the idea of bringing our daughter with us to the appt because I wanted her to enjoy hearing if we were having a boy or girl with Rory and I rather than waiting to hear it from us. In hindsight, I have wondered why I felt so strongly about bringing her and wished I wouldn't have. The three of us entered the stenographer's exam room. She told me that my bladder was a little too full and she was having difficulty seeing everything. She reported that she could not tell us if we were having a boy or girl and that I would most definitely need to come back for more pictures. I looked over and saw our baby's spine and commented that it looked like the most perfect curved spine. The stenographer stated that she doesn't care so much if it is curved as if it is closed at the end. I said something along the lines of "it looks good right?" I remember her saying "mmmhmmm." She then handed me a picture of our angels tiny little foot. For days I asked myself why in the world I didn't have it figured out that something was wrong right then and there. I waited to be called to see the doctor. The nurse called me back and my daughter came with me. Rory waited for us in the waiting room. As we were waiting in the waiting room I heard my doctor say "yes, get her husband." I have no idea why but I immediately thought that another woman may be going into labor and then Rory walked in the room. He asked what was wrong and we looked at each other with horror. My doctor walked in and began sharing the devastating news that our sweet baby has anencephaly, that his neural tube did not close properly and he is missing part of his brain and skull. She told us that he would not live long if he survived the next 20 weeks and that we had two options . . . terminate or carry. Two options that at the time seemed like the most confusing, horrific, unbelievable choices that anyone had ever laid before me. It took all that I had to remain on the chair in one piece. Rory was amazing. He held my hand and kept me sturdy on the chair as he stood beside me. Our daughter asked me why I was crying and I told her that our sweet baby is so very, very sick and we may not get to meet him. It's the first thing that came to my mind. She was so sweet and said that she was sad too after covering my lap with her jacket. She's an absolutely amazing little girl and while I believe that children should know that their parents also experience a variety of emotions, I will forever regret her seeing me that moment. Luckily, I was able to make it to the restroom to call my mom, share the news, ask for her help before losing myself in sorrow. After collecting myself, I opened the door to find once again my husband there being the wonderful daddy he is while waiting to keep me steady as we walked to our car. We were sent to the hospital for an ultrasound in the perinatal department. Before our second ultrasound my mom met us at the hospital and my little sister, Abbey, arrived shortly after. They provided a safe and comfortable environment for our daughter while we completed the ultrasound. The staff at the hospital were wonderful but unfortunately they only confirmed the diagnosis no matter how hard I prayed for something to change in the short 30-60 minutes (which seemed like seconds) between appointments. The stenographer at St. John's asked if we knew and/or wanted to know the gender of our baby. I quietly told her after a few moments that we wanted to know. Immediately, she told us we were having a boy. Squeezing each others hands throughout the ultrasound my husband and I allowed ourselves to experience our emotions as we watched our son moving actively on the screen. He seemed so perfect. While all the medical professionals reported that our son was imperfect I could only think about how perfect he appeared . . . how perfect he was to me. My mom, older sister, Kristy (who dropped everything and came in record time), Abbey, and Ryan arrived at our house shortly after we returned home. They held me, loved me and supported me as we all processed the shocking news. I remember calling my sister-in-law, Jen, to tell her the news. It seemed impossible that I was talking about about my baby. Rory laid down with our baby girl and napped, which made me worry for him because he was only going to wake up to the reality of what seemed like the worst nightmare all over again. But, knowing that he and our daughter were napping peacefully right above me warmed my heart even under the circumstances. I called my dad to share the news, which he had already known (my big sis helping in every possible way to make anything and everything a little bit easier). He told me he loved me and he would be on his way. I am so grateful to Rory and our wonderfully amazing family who provided unconditional love and made it possible to get through the first 48+ hours after learning of our son's fatal diagnosis. Knowing that they will always be with us brings me tremendous comfort. I am also grateful to God for bringing me peace, strength and courage during this incredibly difficult time.