Escaping Reality

Leaving for vacation (5/26/05)…
As David and I pulled away from the house very early this morning, I felt that the timing of vacation was going to be better than I had anticipated. Though the reality of Zoe’s condition is still very prominent in my mind, I felt that maybe we were going to be able to experience some amount of joy on this trip. The plane ride was good…David and I were able to act in love and enjoy one another’s company. I wasn’t affected by every pregnant woman or infant that strolled by me. However, emotions would strike every once in a while when I’d find myself back in that place again, thinking about that torture of knowing my Zoe is going to die. Maybe I am in a different place that for just a moment, I want to have hope, or I want to be in denial and believe that she is going to be alright. I know it is unrealistic and that I would just be kidding myself but maybe kidding myself is protecting myself…and maybe that is okay if even just for a moment.

Arriving in San Diego…
David and I traveled to San Diego to be with friends (Chris and Jaime Gianni) that we met at the Kona Encounter in Hawaii. When David and I stepped out of the terminal, we were not sure if we were looking for Chris or for Jaime. We walked outside of the airport and soon saw Chris drive up to the curbside. We were glad to see him and were immediately put at ease. Chris quickly told us that we can talk about our situation as much or as little as we want to. David expressed that he really appreciated Chris making that comment and that it would probably allow David to talk about it more.

We walked about shops in Del Mar while we waited for Jaime to arrive after picking up their kids from school. It was great to see Jaime and their three kids (Camden, Caelen, and Chase) were absolutely adorable. Jaime is a very comfortable person to be around. She asks good questions and I did not feel uneasy talking to her about Zoe’s condition. It was obvious that Jaime was concerned about David and I and felt a lot of compassion for our situation. I never felt that Jaime said any insensitive comments which allowed me to talk more openly with her. They were extremely kind and generous to us throughout the stay. They expressed that since we were their guests, they wanted to treat us to all meals. Though we did not have any of those expectations, it meant so much that they would take care of us in that way.

It was nice feeling that we could escape with Chris and Jaime. Jaime and I took walks every day and she would ask me how I had been doing to that point or what I had been thinking about. I found myself expressing my thoughts to her and she received them in a very accepting manner.
We stayed with Chris and Jaime until Saturday, May 28th. I don’t know when we will see Chris and Jaime again but I hope that it will be possible some time soon. I could imagine being good friends with Jaime but that is difficult when there is so much distance separating us. I know that she desires to be informed about Zoe on a regular basis and I am confident that she will be lifting us up in prayer.


On to Seattle (May 28)…
We left San Diego and headed to Seattle to stay with more friends whom we met in Hawaii (Philippe and Laura Vallerand). Philippe and Laura are the couple that prayed for us at their church on the designated Sunday for couples who were having difficulty getting pregnant. They are a wonderful couple whom David and I admire very much. We had been looking forward to seeing the Vallerands, but for some reason anxiety was starting to creep in during the flight. I think that I was becoming nervous about seeing someone new and talking about our situation. I feared that it might be too intense and that I might feel overwhelmed. I have still had little contact with people since receiving Zoe’s diagnosis.

As soon as Laura and Philippe picked us up at the airport, I remembered why we respected them so much and just why we thought they were so wonderful. Laura often reminds us of David’s mom in that she is so incredible genuine and a woman who is truly seeking God in such a beautiful, humble way. They were incredible to us. They allowed us to see amazing pieces of Seattle. From the city to the mountains, it was all wonderful. Laura and Philippe, just like Chris and Jaime, were so kind, compassionate, and generous to us. It was obviously that they desired for our life (if even for just those few days) to be as relaxed as possible, and for that I will always be grateful.

Anxiety strikes (6-2-05)…
It is the last day of our vacation in Seattle and David and I are supposed to be enjoying a free stay (compliments of Philippe) in a beautiful city in the corner suite of the Hyatt Regency, a luxury that we are not sure we could ever justify on our own budget. Though we enjoyed a good portion of the day, when the evening drew later, I began to sense a great deal of anxiety about returning home. For 10 days, David and I have been in our own protective bubble and at times have been able to escape our reality. It has felt safe and controlled. Now I fear returning to a place where there are demands placed on me, people know about my life, and I have to face my reality. It is a scary thought to me.

I laid my head in David’s lap and cried a lot. I cried out for our daughter and for our situation to be different. I want her to laugh and talk and walk like all the other children. I want to be able to take care of her and love her and provide for her needs. Yet I have no idea what lies ahead of us…if she will even exist outside of my body. I ache for her.

David held me and loved me yet he was more direct tonight than at other times recently. He said that this experience cannot take away who I am and that I cannot allow it. He told me that I have to survive and that as hard as it is I must face reality. David prayed for me and read a passage from “Good to Great” a book that he had been reading during vacation. It was a story about a man who was repeatedly beaten in a concentration camp. Though he never knew what was coming next, he knew that he had no choice but to survive and he did. I eventually stopped crying and gathered my composure to begin preparing mentally for the trip home. I somehow ended up sleeping alright.

Breakfast with Laura and Philippe (6-3-05)…
Though we were leaving early Saturday morning, Laura and Philippe met us at the Hyatt to see us one last time before we returned to Indiana. We met for breakfast in the hotel restaurant. David and I were seated for a few minutes before they arrived. When Laura and Philippe walked in, Laura was carrying a gift bag that I knew was for Zoe. She handed it to me and said that it was okay to open it then. She said that she just couldn’t resist getting it for “our little girl”. I pulled the cutest softest little doll and fluffiest pink blanket out of the bag and told her that I knew Zoe would love them. Though in my mind I think “I hope Zoe gets to enjoy them”, I know that Laura’s faith allows her to be sure that she will.

We spoke with Laura and Phillipe about the anxiety that I was feeling last night. I talked about not knowing what to feel…recognizing that God has the ability to completely restore Zoe though he may choose not to do so. Laura spoke about the YWAM board meeting that she had just returned from in Portland, OR. She spoke about a man on the board who gave testimony to many healing that he had seen recently. Laura told him that she knew of someone who needed that healing right now. Laura, Julie Livens, and this man prayed for us and prayed that God would heal Zoe.

Philippe sat there listening through much of our conversation and eventually said that he had some thoughts that he was not sure would be seen as popular ones. He spent a few minutes affirming our pain and the difficulty of our situation. He went on to say that as tough as it is, this situation is not about us, it is about God. How will we choose to honor him through it? Philippe talked about choosing for the focus to be on our pain or for the focus to be on the character of God and what we know about him even through the midst of this extremely difficult situation. He spoke about representing him well when we spoke about our situation with other people.
David and I left the restaurant knowing that there was a great deal of truth in what Philippe was saying. We know that God is constant even when life circumstances are chaotic. We know that he loves us and cares for us even at times when we wonder if he sees our pain. On the way to the airport, David and I talked about ways to represent God well even through this situation. We aren’t sure we know how it will look but we do desire to honor him in the midst of our pain and we pray for the faith and ability to do so.

Up and down (6-4-05)…
I was doing okay flying home and then I was emotional…up and down…up and down. This sort of feels like the story of my life right now. At times, I would think about Zoe dying and at times I would think about her possible healing. At one time, I turned to David and said, “What if Zoe has 6 fingers and she needs kidney surgery and that is all that is wrong with her?” David said, “What do you want me to say? Do you want me to be honest?” I hesitantly said “yes”. David said, “Honey, Zoe is going to die.” It felt so cold but I think that David is trying to also deal with our reality. He wrestles back and forth just like I do with wanting to believe and not wanting to have false hope. I just put my head on his shoulder and tried to fight back the tears.

Coming home from vacation (6-4-05)…
We had arranged for Justin and Sandy to pick us up at the Indianapolis airport. Due to inclement weather in Chicago, we were about two hours later than we had expected. Justin and Sandy were great though and acted as if it did not bother them in the least. When we exited the terminal, Justin and Sandy were sitting in the waiting area and Sandy was feeding Josiah who is now almost 2 weeks old. He has gotten darker since we last saw him and he is still so tiny. They had just attended a day conference on issues related to interracial/ intercultural adoption. The conference looked at the difficulties they may face and Justin and Sandy said that some of the possibility scenarios Josiah may have to go through brought tears to his eyes. Besides talking to Justin and Sandy about the conference on our way home, we also spoke a little about our vacation. I think that it was good for them to see us slightly more relaxed and interactive than when we left for vacation.

When we arrived home, Danny, Nichole, and the kids were away visiting Nichole’s family. It was good that we were able to come back to an empty house and start to ease back into the routine instead of having to interact a lot right away.

The First Standing Appointment

May 25, 2005 (The first standing appointment)…
I was slightly irritable this morning, anticipating the 11:30am appointment. Becky performed an ultrasound for approximately 90 minutes before Dr. Landwehr made it to the office due to several emergency procedures. Becky immediately detected Zoe’s heartbeat. It was beating strongly at 153 bpm which is the rate of a healthy fetus. Zoe definitely has 3 chambers in her heart and possibly four…four is normal. It was slightly unclear but Becky thought she detected four chambers. Her brain seems to be developing well. Her facial features seem to be normal…eyes and ears placed correctly, nose of regular size, and no apparent cleft lip. I believe that little Zoe is a beautiful baby and I am becoming less and less afraid of seeing her outside of my body. Zoe does have 6 fingers on her left hand but her right hand and feet seem to have the typical five digits. Her feet seem to be turned in the correct direction. Becky kept saying that her physical features do not seem to match any of the textbook descriptions of Trisomy 13. I was glad to see Zoe alive and moving quite steadily. I became emotional a few times just looking at the screen thinking about my precious little girl and wondering why it has to be this way. I did not walk away with additional hope…the outcome of Zoe’s life will likely be the same. Many internal abnormalities are not necessarily detected through the ultrasound and therefore I will not allow myself to attach to false hope. I am protecting my emotions.
After the ultrasound was over, Dr. Landwehr was paged and joined us a few minutes later. Dr. Landwehr said that it is possible that we have a 1 in 4 chance to produce a child without Trisomy 13. Not that he was presenting this as a positive stat, but I did think to myself, “is that supposed to make us happy?” Dr. Landwehr explained that I have passed the point that he would conduct a surgery to remove Zoe if she died, instead he would induce labor and he would not stop the process if I went into premature labor. Since we are going on vacation tomorrow, we will not see Dr. Landwehr for another two weeks. I do not know how long Zoe will be alive…I want to see each day as another blessing. My desire is that at the least, David would be able to feel Zoe move. I want him to be able to connect with his daughter in that way.
David and I had blood drawn after the appointment with Dr. Landwehr. It was supposed to be a simple blood draw for genetic counseling for David and I however, the orders were not there and the ordeal took much longer than expected. At one point, David had to turn away from the receptionist and walked down the hallway with his hands on his head. She didn’t know the severity of our situation but was getting the idea. (Consequently, I have had my blood drawn several times since that experience and they definitely remember me.)
The results should be in shortly after we return from vacation and then we will be able to begin the genetic counseling process. We have been referred to the Indiana University Medical Center for this process which makes us feel slightly more confident.

Life Is Hard (God Is Good)

By Pam Thum

You turn the key and close the door behind you

Drop your bags on the floor

You reach for the lightBut there's darkness deep inside

And you can't take it anymore

'Cause sometimes living takes the life out of you

And sometimes living is all you can do


Chorus:

Life is hard, the world is cold

We're barely young and then we're old

But every falling tear is always understood

Life is hard, but God is good


You start to cry 'Cause you've been strong for so long

And that's not how you feel

You try to pray, But there's nothing less to say

So you just quietly kneel

In the silence of all that you face God will give you His mercy and grace

Jesus never said it was an easy road to follow

He only said that you would never be alone

So, when your last thread of hope begins to come unraveled

Don't give up, He walks beside you on this journey home

And He knows


Chorus:

Life is hard, the world is cold

We're barely young and then we're old

But every falling tear is always understood

Life is hard, but God is good

Email sent on 5/24/05


Hello Friends. We love you and have appreciated all of your words of concern, emails, cards, prayers, flowers, and other gestures. We could not ask to be surrounded by a more supportive group of people. We know that many of you have been agonizing with us over the past week. We have not been very communicative. It is just so hard to verbalize the emotions we are feeling. I feel so vulnerable right now and it is extremely difficult to communicate without crying. I told David that I do not feel like I have been on a rollercoaster this week, but instead I feel like I have been on a submarine. The depth of emotions have been exhausting. I want to let you know that we are surviving, as difficult as these days are. I have attached some excerpts from the journal that I started when I found out about the pregnancy. They are not bright thoughts, but they are real. I thought that they would at least let you know where I have been over the past few days.


We will be having an ultrasound on Wednesday, which will be our standing appointment. We will also have a chance to ask more questions to our doctor about Trisomy 13.
David and I are scheduled to leave for vacation on Thursday. I hope that the trip proves to be good timing. We will be with friends that we met in Hawaii. They are very kind people and I am sure that they will provide us space when we need it. Your continued prayers would really be appreciated. You are all a blessing to us.


Love, Christina


Meeting Josiah Michael Ullom…
Joey Ullom was born early in the morning on my birthday. This process for this adoption has gone very quickly. Justin and Sandy just received the phone call from the adoption agency a couple of days ago notifying them of the upcoming birth of a child and the choice of the birth mother to place with them. Justin and Sandy felt a mixture of emotions as when they received the call. We had actually begun the adoption process before they had but stepped out once I had found out that I was pregnant. We have walked through several steps of the process together. When Justin called us to tell us about their great news, he was very sympathetic to the thought that we may not be able to be excited for them at this time. He also expressed that it was quite special to them that their baby was born on my birthday.

Justin and Sandy headed to the hospital yesterday morning and crazy enough brought Josiah home at about noon today (5/25/05). Justin and Sandy wanted us to be able to meet Joey before leaving for vacation, so we headed to their house as soon as our 3½ hour blood draw venture at the hospital was over. It was nice meeting Joey. I am so happy for Justin and Sandy though it is still difficult to demonstrate my happiness on the outside. The miracle of Joey’s birth and every other healthy child is becoming more and more of an amazing thing to me. As I held Joey, I thought of Zoe and searched for a hint of hope that she would be a healthy, thriving little girl.

Attempting to Celebrate

Getting away…
We had a friend offer to pay for David and I to get away before we leave for vacation on Thursday, May 26th. We decided to take him up on his offer and headed to Indy on Friday and Saturday (May 20-21). It was good to be away from the house and be in a different environment for a short while, however the pain still followed us. We enjoyed one another’s company but continued to have the difficult conversations. At times, our minds would wander and I would either start crying, David would say “this sucks” or we would just become contemplative.
While in Indy, I had to shop for a maternity swimsuit for vacation. I was dreading this yet it needed to be done. I continue to struggle with my changing body for a whole new set of reasons now. We stopped first at the Castleton mall at Mimi maternity. How was it possible that the first shirt I looked at when I stepped into the store was a brand called “Zoe D.”? What a sick joke…David hugged me and I fought back the tears. I proceeded to try on swim suits and sale items while my mind felt tormented and slightly numb. I was once excited about buying maternity clothes and now I don’t know how to feel. I walked out of the store with nothing.

Saturday, May 21st…
My parents came to Muncie to “celebrate” my birthday. David and I arrived home at 3:45 and they were supposed to arrive within the next 45 minutes. We felt ourselves breaking down and wondering how we could have a descent evening with them. Jeff and Sarah McLaughlin brought us dinner that we decided we would heat up and eat with my parents. David and I made plans to play basketball, eat supper, and watch some stupid television. My parents arrived at 4:30 and brought a beautiful outdoor potted plant with them. It was good to reconnect with them after such a difficult Wednesday night interaction. We played some basketball, picked weeds (to get rid of mom’s nervous energy) and talked while we ate pizza together. Dad said that the last three days had been the hardest days of his life because he just keeps thinking about me having to carry a baby that is going to die. They asked us a few more questions that had come to them and we spoke openly. We told mom and dad about the deformities that had been discovered in the ultrasound on Monday. I expressed that I really wanted them to feel the freedom to ask us about things at any time. I have spent too much time over the past two years of infertility feeling like there was something wrong with me and few people knew how to communicate with me. I don’t want to feel like I am in that position again.

Sunday, May 22, 2005…
We didn’t go to church this morning. In fact, we are pretty much not doing anything until leaving for vacation on Thursday. I have cancelled all of my clients until we return. They have been informed that I am having serious complications with my pregnancy and they have shown a lot of concern. One client even sent flowers. I am glad that I have decided to take the rest of this next week off. I do not have much reserve right now to offer my clients and I cannot promise that my mind would not be wandering significantly while they were talking to me.
I didn’t sleep all that well again last night but I fortunately had a restful 2 hour nap this afternoon. David worked out in the yard most of the day laying mulch. I checked up on him every so often, but I really have been bumming a lot today. Actually, David has too…mulching was just an attempt to keep his mind occupied. We have had the house to ourselves all day and will also have it to ourselves tomorrow. Though we love Danny, Nichole and the kids, the space has been good and provided some additional peace. I am sure that it was also good for them to get away from the heaviness of our home right now.


Monday, May 23, 2005…
Today I turned 31 years old. Slightly ironic that the week of David’s birthday we found out that I am pregnant and he was able to declare it the best birthday ever. Now, I can declare this the worst birthday ever. Birthdays are a big deal to me. I love feeling special that particular day and selfishly having it be all about me. There were many kind people who sent birthday emails and cards but I think the day was MORE emotional because it was my birthday. David was wonderful…he did everything right. In the morning, David gave me a beautiful potted plant and a really nice card. At lunch, he gave me a digital video camera. I have been wanting one for the past two years (ever since we started trying to get pregnant). The main desire was to be able to video the pregnancy and our child. David knows that it could feel like a strange gift right now, but I have been talking about it for so long and we will get good use out of it somehow. The favorite part of my birthday is the tradition of David cooking me my birthday supper. He grilled salmon (with capers) and marinated portabella mushrooms, and made corn on the cob and mixed fresh fruit (strawberries, blackberries and red raspberries). That did bring some joy to me because it just means so much to have him serve me in that way. He loves doing it as well because he knows how much it means to me. He took three walks with me throughout the day, which is truly being a servant to me since I like to walk so much more than he does. But it was obvious he didn’t mind…his desire was just to make me happy. We did have some laughs and smiling during the walks, which was good. During the first walk (on the trail by the White River), an extremely nice guy from our old church came up behind us while he was running. He told us congratulations since it was the first time he had seen us since announcing the pregnancy. David and I both just kind of looked at him like saying “this is not a good time.” David told him that things have been better and he asked what was going on. David said, “You don’t want to know and we don’t want to talk about it.” The guy just kind of stumbled around words for a while before taking off on his run again. We felt bad because he is such a nice guy. He probably felt bad also and he has no idea why. We wondered if this is what the next few months are going to be like.

Waking Up

Friday, May 20, 2005…
I was finally able to bring myself to start reading more about Trisomy 13 on the internet yesterday. It was very hard but I feel like it will be good to do that when I can build up the energy to do so. The images that I find are quite disturbing. I think that every mother imagines their baby as a perfect little creature with 10 finger, 10 toes, two eyes, a fully developed brain, and a functioning heart. None of these are a given when your baby has Trisomy 13.

I have struggled between being afraid to attach to Zoe Dawn and wanting to connect with her and let her know that her mommy is right here for her doing everything she can to just make life as comfortable as possible for her. Yesterday, I began to talk to her again. Every time I feel her move, I tell her that she is strong and that I love her very much. Our prayer is that she would not suffer and that God would take her back into his arms before she does suffer. I am adjusting to being grateful for each day I have with her inside of me because it might be the last. Since receiving the news, I have struggled with wanting to hide my pregnancy and ignore what is happening inside and outside my body. Today, I am realizing that what the doctor said is true…she is alive because my body is the best possible life support that she could have. Last night, I took my first prenatal vitamin since Monday and I began drinking more water again. I love Zoe and I must be a mother to her and take care of her for as long as I can.

My prayers (5/22/05)…
During the last 5 days since receiving the news about Zoe, my prayers have been very brief. I am not angry at God yet I do wonder why this is happening. I do not blame God yet I desire for Him to provide the answers. David said it well when he expressed that he has questioned God so many times in the past and that he does not feel like being angry at God or questioning Him now. He just needs his heavenly Father to hold him and tell him that everything is going to be okay because He is the only one that can say that.
On Monday and Tuesday, my prayer was that Zoe would die soon so that we could begin to heal. Right now, it feels as if we are waiting for the inevitable and it is such a conflicted place to be. By Wednesday, I began to pray that Zoe would not suffer and that I could be thankful for everyday I have with her. Throughout it all, I cry out for God to have mercy on us…whatever that might mean.

Precious Lord…
Precious Lord, take my hand. Lead me on, help me stand;
I am tired. I am weak. I am worn;
Thru the storm, thru the night, lead me on to the light.
Take my hand, precious Lord, lead me home.

When my way grows drear, precious Lord, linger near;
When my life is almost gone,
Hear my cry. Hear my call. Hold my hand lest I fall.
Take my hand, precious Lord, lead me home.

Responses

Responses…
Over the next several days, we received emails from many, many people. People were hurting with us and praying for us. David wanted the emails sent to him because he wanted to protect me from any insensitive responses we might receive. Everyone was really wonderful though. Friends offered to provides meals for us and one friend offered to send us away for a couple of days if we desired it. On Friday, we took him up on the offer. We received beautiful flower arrangements and cards from loving people.

(The email responses have been sitting in my inbox for 4 years now. I have decided to copy a few of the initial emails to this post....and then I will finally feel alright erasing them. They remind me of the love and support by which we were surrounded.)

***Hello, my dear friend,

I hope that you read the email that I sent to David's account this past week. I do love you so much. My heart has been broken since hearing the news from David. You are constantly in my thoughts and prayers. I wanted so much to just drive to Muncie and give you a hug and get back in the car and come back home, but I also wanted to follow your wishes so I restrained. I also didn't do my normal birthday call to you. Just know that like all of the other days you were thought of on that day as well. I celebrate your life. You are a blessing to so many, and God for whatever reason allows for me to be one of them.

I am praying for peace to overwhelm you.

I don't know what really to express in an email. Know that I am here for you always and can be there whenever you need. Let me know when you are feeling like you can handle a visit. You know that I don't have to be entertained. I just want to be a comfort to you, David, and Zoe. What a beautiful name!

I love you!
Mart

***Hi David & Christina,
We hardly know what to say, but you have been in our prayers and thoughts all day and will continue to be so tonight as you're with your family Christina. We love you. We'd be happy to bring a meal tomorrow or Fri or keep Josiah and Hannah if that would be helpful. We love you. Although, we can't understand the depths, we grieve with you now.
Much love,
Jeff & Sarah

***I am so sorry for both you and Christina. The news you just relayedabsolutely sucks. I am so sad for you both. I feel like this is just sounfair!! I know I should say a lot of "godly" things right now, and Iprobably will sometime in the future, but right now, to be completelyhonest, I am angry and mad at God. Tim and I got the email this morning before I left for work. We sat downtogether to pray for you guys. We prayed, but it was so hard to know whatto pray for and how to pray. In my mind and heart, I can't help but ask, haven't you been throughenough?!? It seems so unfair that you would be dealt another horrible hand.I suppose there is a reason and that will manifest somewhere down the line.I just don't see any logical reason for this. You have both tried so hardand waited so long for this precious gift of life. To have the sheer joy ofknowing you were with child be dampened by such a blow must be a realheartache! I really can't say that I understand at all what you are going through;however, I may be able to share in some of your emotions. If you need totalk, write, or just vent, I am here. Thank you for sharing this with us. I just knew something was wrong. Infact, I thought I heard you choke up and almost cry during prayer lastnight. Please do share my concern with Christina as well. I don't have her emailaddress here at work. Hang in there. You both are dearly loved.
Karen D.

***Hey guys, Not much to say except that we are so sorry and will pray for youconstantly. I am home for the next two weeks and would be happy to bringdinner any night or babysit Hannah and Josiah, so please let me know whatyou need. You guys are so special to us and our heart is broken for you.Literally, we both have physical pains imagining what you're going through. Thanks for keeping us informed.
Love, Casey and Jennifer

***Dear David and Christina,
We love you both so much and our hearts are aching for you and with you.
We are so sorry.

You will be in our thoughts and prayers.

Our love,
Keith and Edie

***David & Christina,

I just wanted to say that I've been very broken-hearted since I heard your news. It seems unbelievable to me and I am so very sorry. I love you, I care, and my heart and prayers go out to you. No need to reply.

Love and prayers,

Jenny C.

***David and Christina-you guys have been on my heart so much lately. i just want you to know that you are being prayed for and thought of often.

i really adore both of you and hope you know how pained i am for you right now. i cannot even begin to imagine what you are feeling and going through.

if there is anything i can do, or anything i can specifically pray for, please do let me know.

if there comes a point in time when you would like some company, please don't hesitate to let us know. we can come with games or just come and sit with you in silence. :-) or, of course, you are always welcome here. we can have dinner or ice cream or whatever!!

whatever you take from this email, just know that you are loved are cared about.
Karen D.

***Christina,
I'm so sorry. My heart is breaking with you guys. I am sure that you are going through every range of emotion and your thoughts must be all over the place.I just love the name that you chose for your little girl. Zoe is such a beautiful name! I'm certain that she has a wonderful home inside such an amazing mommy. Again, I'm here for you in any way that you may want or need throughout your pregnancy and beyond. Call or e-mail anytime day or night and know that you can trust that I will just hear you, whatever you may be feeling- good, bad, or ugly.

I love you so much.

I am going to pray for you guys. I love you.

Tonya P.

***Christina,
Thank you for emailing. I have been thinking about you and praying for you
daily. I feel blessed that you have shared Zoe with me through your
thoughts and words. She has an amazing mother and father! I am praying that
God will continue to give you the strength that you need each hour of the
day.

Again, if you need anything, please don't hesitate to ask. I love you both
(actually all 3 of you).

Many blessings,
Jami H.

The Moment Everything Changed

Monday, May 16, 2005…
Expecting a typical long Monday at work, I got up and went to the office to see my first client. After coming out of my 10:00 session, Karen, the office manager, informed me that my entire evening had fallen apart and all of my clients from 3-8pm had cancelled. She said she had contacted others to move to those slots but no one was able to reschedule. I left at 2:00 for lunch not knowing if I would be returning to see other clients later in the evening. Shortly after arriving home for lunch, David came home and so we ended up eating together. After finishing our lunch, David said he needed to tell me something. I didn’t know what the something was but I felt myself getting anxious. David explained that he had received a call from Dr. Landwehr’s office that morning and was told that we needed to come in for a 4:00 appointment to discuss the results of the amniocentesis. David decided that he should have Karen cancel all of my evening appointments. He was not given anymore information but we knew that they would not ask us to come into the office to discuss normal results. My heart absolutely sank. For the next 1 ½ hours, we waited as if we were anticipating a life sentencing. We took a walk in the neighborhood to help time pass more quickly. I felt that I would go stir crazy sitting in our room just thinking about it. We didn’t talk much before the appointment but I did tell David that I didn’t feel that they were going to tell us that Zoe has Down’s syndrome. I expressed that I was afraid that they would tell us that our baby was going to die and that I would be carrying it for another 5 months.

4:00pm, May 16, 2005…
We hesitantly walked into the doctor’s office waiting room shortly before 4:00. Our friend and nurse, Karen Renner, called us from the waiting room and escorted us to Doctor Landwehr’s personal office. We sat there waiting for him until 4:45…not saying much…just waiting. Dr. Landwehr finally entered and apologized for the wait. He was nervous and stumbling over his words as he told us that our little girl has a genetic disorder called Trisomy 13. He said that because the disorder occurred due to a Robertsonian translocation, it is highly likely that either David or I is a carrier and therefore would not be able to produce a child without Trisomy 13. We were given the devastating facts that 50% of these babies die before birth and the average lifespan is 2 ½ days for those that survive due to the extreme physical abnormalities and mental deficiencies. At that moment, our lives were altered forever. I could not speak, only cry. Dr. Landwehr was beside himself. It was obvious that giving us this news was also devastating to him. He graciously offered to do whatever he could to help us be as comfortable as possible. He said that he would perform free ultrasounds every week in order for us to know how Zoe is doing.
Dr. Landwehr did an ultrasound before we left his office. I could barely look at the monitor fearing that my baby would already be showing signs of the Trisomy 13 or that she had possibly already died. Zoe’s heart was beating strong and she was moving, but there didn’t seem to be as much movement as in previous ultrasounds. The amniotic membrane was starting to collapse and Dr. Landwehr said this is likely due to Zoe’s kidneys not working as well as they should. There also seemed to be something wrong with her bowels. He pointed out that she has the two lobes of the brain and then noticed that the fingers on her right hand were spread open. There appear to be 6 fingers. David said that was the kicker for him…neither of us know anyone with 6 fingers. Oh, our precious baby girl… How could this be happening to us? The baby that I am carrying is going to die…

Monday night…
I thought my head was going to explode from crying and confusion. All of the sudden something that I was so thrilled about (being pregnant) was no longer a thought that brought me joy. Instead of embracing my pregnancy and my changing body, I now desired to hide it so no one would ask me questions or stare at me like I should be happy.
I did not talk to anyone that night. No words could come out. I was just so confused, hurt, and broken. Danny and Nichole knew something was wrong but we hadn’t even told them in the first 2 hours that we had been home. Nichole made us dinner and we ate it in the isolation of our bedroom. We told them that we would want to talk to them after we finished eating.
After supper, Danny and Nichole came upstairs. They had to bring Hannah with them but Josiah was distracted by a movie downstairs. David did the talking and I basically just sat there with my head hung low. He told Danny and Nichole about the Trisomy 13 and that the baby I am carrying has a very small chance of surviving. Danny and Nichole sobbed. Their hearts were obviously breaking for us. They did not know what to say but that was okay by us. There were simply no consoling words to offer, but to know that they were hurting so badly with us meant something.
David made a few phone calls that night to people who were affected by the schedule change of our day and therefore knew that we had the dreaded doctor’s appointment. David was drained. He had to rehash the devastating news with these friends and each time he said it, the pain was driven deeper and deeper.

Sleepless nights…
It seems that 4am would become my new wake up time for the next several days. I would awaken after struggling for hours to fall asleep initially and my mind would start racing and I couldn’t control the sobbing. I was scared to see my baby. I imagined her being so incredibly deformed. How can it be right to be afraid to see your baby? I imagined that the amniotic sac that is collapsing is slowly suffocating her and killing her inside my body. I felt her kick most often when I was lying down and since I was completely depleted of energy, lying down became a typical state. I used to long to feel her move… and now, how could something that I had longed for now make me feel strange and gross?
David would take early morning walks with me since it was torture to just lay there thinking. He was being so compassionate and tuned in to my needs. It was such torture for David to see me broken this way. He listened and held me when I cried.

Tuesday morning, 6:30am…
After having been awake for a couple of hours, David and I decided to see if his dad and Karen were awake. We told them that we had had our doctor’s appointment yesterday and that we wanted to talk with them. They told us to come on over.
Again, David did the talking while I sat there with my head hung low, just crying. Al and Karen cried with us. They were so, so sorry that this was happening to us.

The email…
On Tuesday night, I had the house to myself for a couple of hours. David, Danny and Nichole and the kids had gone to the Living Room for the Tuesday evening service. Though it would be draining for him, David felt that it would be a good idea for him to deliver the message that he already had prepared. I decided that I would take this time to write an email to a couple of friends explaining what was happening. In the course of writing the email, Nichole returned home with Josiah and Hannah. She said she was sorry for interrupting my time but she just couldn’t be there and act like everything was okay. Josiah asked me if I was feeling better (he had been told that I was sick and that was why I was in bed so much). With tears in my eyes, I told him that I was not much better yet. Nichole took the kids upstairs for a bath and I finished the email. The next day, David would send this email to our entire small group, the elders and other leaders in the church, and the group of young adults in the Living Room ministry. This is what the email said…

This is David. I want to update you on my wife, Christina's, pregnancy. It has been a tough couple of days. This is what Christina wrote earlier and what I wanted to share with you: Over the past month, our doctor has performed the components of something called the triple screen which screens mainly for Down's syndrome. The first step is to measure the skin thickness on the back of the neck of our baby. Since the skin thickness was slightly above normal, I had a blood test done...the blood test suggested that I had a 1 in 78 risk that we would have a baby with Down's syndrome. Because our doctor felt this was high, he suggested that we do amniocentesis to provide peace of mind because it would give us results with 99.9% accuracy. The results were supposed to take two weeks...we received a call from the doctor on Monday and were told that we needed to come in for an appointment at 4:00. The time since the appointment has been possibly the hardest time of my life. David and I were not told that our baby has Down's syndrome. We were told that our baby has something called Trisomy 13. It is a genetic problem that likely occurred because one of us is a carrier and therefore we would never be able to have a biological child without this disorder. I am 18 1/2 weeks pregnant and we are having a girl. There is a 50% chance that she will die in utero. There is an 80-85% chance she will die in the first 6 months of life and there is a 95% chance that she will die within the first two years of life. If she survives birth, she will have severe deformities and severe mental retardation. We are devastated to say the least. We are basically waiting for our baby to die and I am having a very, very hard time with it. I am sorry if this feels like too much to handle...there is no way to sugar coat it. Any way you look at it, it is a bad situation. We are having ultrasounds every week to see if the baby is still alive. We would really welcome your prayers.People are asking what they can do...we need your prayers. If you desire to say something to David or I about this, we would prefer emails or cards at this time. It is very difficult to talk about right now. David's email address is davidsmith777@yahoo.com. There is also a website that David has referred others to if you desire to find out more about Trisomy 13. It is www.geocities.com/wilsfordmindy/trisomy13resources.html.

Thank you for your prayers.

Christina

Wednesday, May 18, 2005…
I again awakened David at about 4am sobbing. We decided to take another walk through our neighborhood. Though, I was still extremely sad, it was apparent that our situation was really starting to hit David hard. He was very emotional throughout the walk. We would just stop and hold each other for comfort.
This was going to be a very long day. Earlier this month, I had registered for a counseling conference in Indianapolis and had already paid my $150. Because I didn’t think I would be interacting with many people, I thought that I would go ahead and attend. I traveled to Indy with another therapist from Briarwood (Becky Licht) and she listened to me talk about the emotions I have been experiencing. It was hard to talk but this was the first chance I had given myself to express my real feelings to someone other than David and I think it was good for me (at least a little). The conference was horribly exhausting for me though. The room was crowded, my head was spinning, and I was nauseous the entire day. It was tough being away from the safety of David and my bedroom that I had rarely left over the past two days. David gave me his cell phone and I called him throughout the day. We were both having a tough day. I was trying to distract myself a little by attending the conference and he was trying to do the same by working in the yard. It was wonderful to see him when I finally returned home.

The long trip to Ohio (5/18/05)…
David and I could not bear to share the news with my parents over the phone. We decided that once I returned home from the conference, we would take off to Ohio. They did not know that we were coming because they would have worried the entire time we were on our way. It is not like us to make trips to Ohio in the middle of the week for no apparent reason. We decided that we would call them once we were about 5 minutes from their house. I had dreaded this trip since we received the news on Monday. My parents are going through so much right now and I just did not want to have them hurt anymore than they already do. As we got closer and closer to Van Wert, I felt as if I was going to have a panic attack. David and I both felt that what we were about to do was going to be extremely difficult.
When we stepped into my parent’s house, you could tell that they knew we were about to give them bad news. We told them about the Trisomy 13 and they cried…hard. They kept saying that they just didn’t know what to say. Mom and dad came over to sit with me on the couch and they just put their arms around me and cried. It was so hard for them to see their own baby girl going through such pain. Mom wanted to know how I could get through this knowing that the baby I am carrying is going to die. I told her that I am not sure but that it is important for me to have the freedom to express the good, bad, and ugly feelings that I am having and that David has allowed me to do that. My dad was really concerned that I am going to be endangered because of the defects of the baby. Though I am not in any physical danger at this time, David assured my dad that my safety will come before the baby if we are faced with that situation.