Sunday, December 29, 2013

Merry-go-round

One of the biggest things I'm learning with grief is that it's not a journey that goes in a straight line. Grief weaves in and out of your life, bringing memories when you least expect it. The best way I've heard grief explained is like a merry-go-round. You never know where the ride is going to stop.

If you're walking with someone through grief, give them space to share. Care about the words they say, even if it makes you feel uncomfortable. I won't promise you it's fun, but being there for someone as they grieve makes you a pretty amazing person because it's not something that very many people do.

For me, I know people care when they listen when I'm real, and don't just move on through my answer without acknowledging what I've said. I know people care when they tell me they think of Jonathan, or they remember what would have been his due date. I know people care when they join me in my memories and recognize that this journey isn't over. We received a balloon and a card for Christmas from a woman who has a website because she lost a child. I don't know how she got our name, and it was hard to receive at first because I hadn't been thinking about Jonathan and what his one year birthday would look like, but I'm thankful for it now. I'm thankful that someone was remembering him, us, and our story.

I'm sure grief looks different for everyone, and it's not something I expect everyone I know to walk with me through. I simply encourage you to be gentle with those who have lost someone. Find out from them what they need, and how you can continue to care for them. I appreciate the people who help me laugh every day, and am thankful that it's some of those same people who provide space for me to be real.

One day at a time, one day at a time.


Monday, December 16, 2013

Land mines

I know right?! Who chooses a title like that?

I appreciate that the Lord never fails us and never forgets about (forsakes) us. I have to admit that I don't always appreciate His timing.

I'm finding that it's actually not a lack of trust and faith in Him right now, but a lack of practice and living it. We very consciously took ourselves out of community and focused on our marriage. Our marriage needed that time, was blessed by that time. Without that intentional meeting of people together on a weekly basis though, I don't find myself talking about my faith as much.

Community is about living together with people, learning together with like-minded people, discussing life and the Lord and how it all works together. There's always a time of prayer and always space to encourage one another and be encouraged. Outside of an intentional group, it's funny how those key components don't happen. Encouragement and prayer should flow from us as Christians, but it doesn't. Maybe I'll leave that for another post.

What I'm finding right now is that I actually don't have a lack of faith and trust in the One that I've known my whole life. I have a lack of practice, a lack of living it. I also have frustrations because there are some unanswered prayers, or at least prayers I've wanted answered specifically that didn't happen the way I was hoping for. So I'm not over it, I'm not through it. There's still stuff, but I'm learning what the real stuff is.

Those land mines? I'm gonna call them all the ways in which I'm not content. I'm also gonna call them all the ways in which I feel like I get to fix it, when in reality I need to continue to let Him fix it. There's a lot of things I want right now that I don't have - hello discontentment. Some of those things I feel like I can touch, like I can be part of the solution. It can be good for me to get involved, but I have to continually remind myself, and be reminded, that I'm not superwoman. I'm not God.

So the journey continues. The one where I focus on Him and choose faith daily. The one where I choose to be intentional about talking to Him and giving him my wants because He's ultimately the one I trust to take care of them. The one where I choose to be intentional about sharing this life, giving and receiving encouragement. The one where I choose to let Him do the work because it's part of who He is. The one where I trust the Holy Spirit to lead me in Daddy's timing and stop trying to just do it my way.

Saturday, October 12, 2013

Little one

We celebrated October birthdays at work on Thursday, and I almost cried. I had that small revelation that life is continuing, without you. My birthday is in 2 weeks and I realized that you won't be here with me to celebrate it. While other mommies are dressing their children for Halloween, I'll be thinking of you and what I would have put you in, or if I would have cared. Then there's Thanksgiving, right before you're due date. It will be a time of thankfulness as always, but also a time of remembering. You will not be there to experience your first turkey, or your first gathering of people who adore you.

I'm not sure what you're due date will be like. I have many days where I imagine what life would be like if you were still in my womb. I'm sure that day will be more of the same, thoughts about what life may have been like. I would be learning your sounds, differentiating between the coos to understand what you need. Cradling you in my arms would be my favorite past time, along with snuggling against your silky hair and smooth skin. My arms are empty without you. I want to be making new memories with you but instead I hold on to the memories that I have.

I see other babies and I think of you more and more. I think about how big you would be now, what you would be wearing and the things you would be learning. I think about how you would be affecting my life, how my schedule would be completely different. Daddy had a dentist appointment this morning and I ran some errands while I waited on him. I never would have thought that driving around town would make me miss you, but I did. I wanted you with me, hanging out in your car seat in the back, either sleeping or crying your eyes out as babies do. I just wanted you along for the ride, in my life and part of me. Some days the moving forward is more difficult. I miss you and I long for you to be with us.

Though I appreciate being back at work, I have felt so removed from you and your life. It makes sense, as my days are filled with projects and phone calls and details that don't involve you. It's been strange to almost feel like you are not real, simply because life continues. I assume this is natural, but it's a strange part of the journey, learning this process of moving on without forgetting.

Tuesday, September 24, 2013

Freedom

1 month
I talked to you today. It's weird not acknowledging that time has passed, so I need to. I like that Daddy reads through your story often. It helps him to remember you. I'm thankful that your things are with us so that I can just talk with you, about your life and how it's affected our lives. You are real. It's easy to "forget" as we continue to live, but then I remember your birth. I remember the joy of holding you. We are living on this earth without you, but you are forever in my heart. I'm so proud to be your momma. 



Learning
I'm learning that emotions are healthy. As I'm allowing myself to cry, and to experience hurt and anger, I see that I have been stuffing my emotions. From a young age, I learned to run from "negative" emotions and not allow myself to feel them. Specifically, I have not allowed myself to experience hurt, anger, and sadness. Even though I've known a lot of sadness in my life, it's still not emotion that's easy for me.


I'm learning that I can be in control of my emotions, but that I need to allow myself to experience them. People will always fail me and I learned to accept that early on. I learned to offer forgiveness quickly, but I didn't really learn what to do with my feelings when I had them later. Now I'm seeing that I can still forgive, even in the midst of experiencing a "negative" emotion. Anger, sadness, hurt, frustration, devastation... all of these emotions are healthy and good. God created our emotions for us to experience them. He didn't intend for us to be run by our emotions, for us to make decisions based solely on our emotions, but to experience them. I am learning to acknowledge and validate my emotions when they come, instead of pushing them aside. 

I have kept myself from experiencing sadness, hurt, and anger, and it has affected my life in ways I didn't realize until this experience. I have watched, and listened, as others have told me how God has used Jonathan's story in their own life. I have been humbled by it and in awe of His power to use a crappy situation for His good. I knew He could do the same in my life, but I didn't expect it in the way it's happening. Through this journey of grief, our marriage is being strengthened as we experience emotions together for the first time. I'm so thankful for the freedom He's bringing into our lives.

the Father
In the midst of this journey I'm reminded of His amazing goodness, His utter love for us. In our pain, I know He's scooping us up in His arms and holding us tight. He's wiped away every tear we've cried. We are resting in His arms as we move forward. We may not know all the why's, but we know that this situation has not changed anything about Him and His character.

God is good all the time. And all the time, God is good.

Sunday, September 15, 2013

Support and appreciation

Since we heard Jonathan's diagnosis, way back in July, we have been covered in prayer. Our family members allowed us to talk freely about the many thoughts going through our head and held us. Our community group immediately prayed over us and our son. My coworkers followed suit. I was checked on regularly, if not constantly, via texts, phone calls, and people at work asking how I was doing.

People wanted to help right away, and it was hard telling people what we needed in the beginning. What do you need while you wait? But we were loved on by people spending time with us and allowing us space to talk.

Since Jonathan's passing, we have been so blessed by the body of Christ. 

Thank you for praying. 
Thank you for giving financially. 
Thank you for checking in via texts, emails, Facebook messages, phone calls, or cards. 
Thank you for sitting with us through tears and laughter.
Thank you for listening.
Thank you for being honest about not knowing what to say or do. 
Thank you for asking us what you can do, and then acting on those things. 
Thank you for providing food and meals. 
Thank you for moving us: for packing the uhaul, cleaning an apartment, and unpacking the uhaul and boxes. 
Thank you for sharing our story. 
Thank you for thinking of us.
Thank you for coming to pick up the crib and giving it to someone who needs it.
Thank you for supporting us as we walk this journey. 

Our journey isn't over; we still need you. We need your prayers as we navigate "normal" life. We need your phone calls and time. Hanging out with you helps us as well. Financially we're still unsure of how it's all going to work out. Danny has been back at work and we are thankful for those hours. We are living off that paycheck alone as I am on leave until September 30th and we're still waiting for my disability insurance to come in. We've had people donate through the PayPal link at the top, send us checks in the mail (ask if you need our address), give us grocery cards, and even pay for a haircut. These have been really helpful as life has continued and unexpected expenses have come.

In the midst of moving forward, we thank you. We are incredibly grateful and blessed. 

Monday, September 9, 2013

Birth Story


I'm amazed at how quickly 2 weeks have flown by since you entered this world and went straight to be with Jesus. Today has been a rough day for Daddy and I as we have contemplated your short time with us. I'm so thankful for God's perfect timing, the way He gently equipped us for your birthday with more knowledge than we were ready for. When we learned that my cervix had shortened, we had no idea we'd be meeting you in a matter of days. But I'm so thankful for those days, and all the conversations and processing that took place in them. We were much more prepared for your birth than we had been during the ultrasound.

Around lunch on Sunday, August 25th, I felt a random contraction and Daddy wanted to keep track so that he could tell if they were coming closer together. I thought he was silly, but went along with it. I had no thoughts of full labor happening. We had lunch with friends and didn't get home till 4pm. That's when I started noticing some back discomfort that wouldn't go away. It felt like gas, but I couldn't get it to leave, no matter how much I visited the bathroom or stretched.

By 9:30pm, Daddy was a little concerned and had me text our ER Nurse friend. She was also a little concerned and wanted me to call Labor and Delivery. They were also a little concerned and wanted me to come in. I was annoyed. You know me, thinking about how I wasn't going to get any sleep that night because we'd be at the hospital and how I would be cranky at work the next day.

The hospital was freezing! Poor Daddy. He was so cold. I had to ask the nurse for a blanket for myself and for him! We were there a little over an hour before the doctor finally had a chance to check me. We had been enjoying hearing your heartbeat, but watching with interest as it dropped whenever I had a contraction. He asked a bunch of questions about how labor was going and found my cervix on the ultrasound. He finally told us I was only dilated 0.5 cm, but that my cervix had rotated so it was in the right position. He didn't think there was any need for us to stay in the hospital overnight. I've had many friends be dilated at 2 cm for weeks so I shared his lack of concern.

We got home around 1am and went to bed. Daddy was able to sleep intermittently. Unfortunately for me, contractions continued and were getting stronger. Daddy says I was playing the violin with my knees; it was the only thing that seemed to help! Around 3am I started pacing. I couldn't lay down anymore because the contractions hurt too much. I had no idea what was to come though. Daddy started timing the contractions and we were realized they were coming every 2 minutes. Time to go!

Back at the hospital, Daddy wheeled me upstairs. Just as I was trying to transfer from the wheelchair to the bed, my water broke. What a feeling! Daddy says I was embarrassed because I put my head down on the bed. I would agree, but I also just needed the support of the bed!

Once I was in the bed, the nurse hooked up a monitor for your heartbeat again, but we let her know we didn't want it. Daddy heard you before she disconnected the machine. I just couldn't imagine going through labor and hearing you flatline. I wish I would've heard your heartbeat, or noticed it, but the pain was so distracting. I'm so thankful Daddy heard you in those quick moments.

I was offered an IV and drugs while we waited for an epidural. They tried morphine and something stronger. The nurse slowly pushed them through the IV, and they didn't touch the pain! Soon after the anesthesiologist arrived with the epidural. He did a great job of getting it in without more than a needle pinch of pain.

When the doctor checked me around 5am, I was dilated to 7cm. Maybe fast labor runs in the family? Once the epidural was in, I could focus again. I think I was still in shock that everything was happening. I hadn't expected you, at least not for some time yet, but apparently you were coming!

Shortly after 6am I remember feeling the urge to push. I was told not to, but I probably asked 3 more times. First time mom here, right?! The nurse finally told me to add more epidural if the pain was too much. They wanted you to come by yourself, for my body to work with you and do everything on it's own. I'm assuming this was to make it as easy as possible on you. At some point I remember feeling something come out of my body. The nurses and doctor were there and the doctor said those words that I wasn't ready for, "It looks like he isn't breathing."

I knew that was probable, and when I felt something happen without a sound, I wondered. Hearing those words - I didn't think I was ready. "7:09am." But then they wrapped you in a blanket and laid you on my chest. In that moment, you became the most beautiful, perfect baby I had ever seen.

Daddy and I just stared. Oddly enough, I don't remember feeling sad in that moment. I was enthralled by you. I stroked your cheek and your hair. Daddy and I laughed at how much hair you had. We carefully pulled back your blanket to see your beautiful face. There was no fear when we saw your double cleft lip. Your eyes were closed and you were so peaceful, so warm.

Daddy held you too, and I remember the way he looked at you. His eyes were filled with tears, and with so much love. You are so loved Jonathan. When he handed you back, he went to find our friends who were able to come that early in the morning. You got to meet Josiah, McKenna, and Rayah, Tim, Ryan, and Spencer and Elizabeth. I'm so glad we got to share you with them, and I'm saddened that you didn't get to meet everyone else. There are so many people who wanted to meet you, to know you, to share their love with you.

Spencer said it best in an email to us the next day. "Never had I felt such overwhelming joy like that holding a baby. {Spencer has younger brothers that he's been able to hold at birth.} Never. I looked down (I apologize for being blunt here) at his tiny body, double cleft pallet, thinking about his stomach and his lifelessness... and you guys I swear to you when I say this; he was the most perfect baby I had ever seen. He was perfection. And I couldn't get that out of my head, because that just doesn't make any logical sense. I couldn't get it out my head. I looked at him and all his physical imperfections, but he was the image of perfection to me. That's when it hit me; that is how Jesus sees us. We are spiritually lifeless, double cleft palleted, stillborns and yet through Christ we are redeemed and perfect. It was such a gift to see his physical flaws but to only register the purest and most perfect love looking at him. It was amazing guys. Your son was so beautiful."

We are so thankful, so blessed, that the nurses just let us hold you, cuddle you, for as long as we wanted. We had to hand you off around 10am because your omphalocele started leaking. They washed you, measured you, and returned you. I can't imagine not having those hours with you. My favorite part? Everyone had gone and it was just the three of us trying to get a little rest. I had you on my chest, cuddled in, and just snuggled with you while I closed my eyes.

We had been told that we could stay as long as we liked, but the doctors and nurses all understood that it would be best for us to grieve at home. They released us around 2:30pm. It took some time to get me cleaned up and ready to go. The nurse left us to say our final goodbye to you. We each held you one last time, giving you kisses for your aunts, uncles, and grandparents who would never get the chance to meet you. Daddy sang Jesus Loves Me to you. And then it was time. We walked out the door with everything we had come in with, leaving the most important piece of ourselves behind.

We miss you little man. 
Love always, Momma and Daddy.

Jonathan Alexander Miller
August 26th, 2013
1 lb, 6 oz, 12 inches long
7:09am

we live
we learn
we laugh
we cry
we love

Sunday, September 8, 2013

Grieving

The last three weeks have been ridiculous. We went from hoping and praying for our son to be carried full term, to going through labor in a matter of days. Wednesday we had an ultrasound, Friday we met with the geneticist, and Sunday I went into labor (the birth story will come)! The hospital stay only lasted about 12 hours, adding to the fast-paced feel. We had been planning on moving at the end of August, so even though we lost our son, we still needed to go through with our plans. We had some family members come out and help, and many friends provided food. Overall, it has been a blur. Many times I have to wonder if the whole thing is real. 

Danny and I have been processing as it comes. Grief is a different kind of emotion. I was journaling the other night about how life feels right now. I was thinking about losing grandparents and other people I've known, and how this is completely different. I started thinking through why. Jonathan is our son. There is a different bond between a parent and a child. Not only are we grieving a son, we are grieving a new life that we were planning for. 

When you think about becoming a parent, you watch other people who have children. You pay close attention to what they do in order to better understand. You have conversations about children and how they change your life. You think about how the house is going to look, how to rearrange your furniture to make space for this little human you're bringing into the world. You start thinking about your time and what you do with it, knowing that this little person will change that. Being a parent is a whole new identity, a brand new role that you have to prepare for without really knowing how to prepare. 

We were so excited to be parents. Throughout our 9 years of marriage, we had numerous discussions about the right time to have children. We knew we had a lot to learn, but we were excited about this new season we were finally beginning. We were excited about bringing up Jonathan in a home where he knew how much he was loved. We were excited to learn who he was, and see him grow into the man God created him to be. This is part of why losing Jonathan is so hard. There's so much wrapped up in being a parent. We are still parents, and will always be parents, but we don't have a child on this side of heaven. 

We see pictures of our friends children, and our nieces and nephews, and enjoy them. Then we hear a child at a store and it brings us to tears. We just never know when grief will come, what little situation will trigger an emotional reaction that wasn't there before. 

The next step is learning how to transition. We want to remember Jonathan, and yet we know we need to move forward. We're just not sure what that looks like, how much to hold on and how much to let go. My heart still hurts, and yet I find myself resting in the peace that he is with the Father, that he never has to suffer. So we walk gently with each other, providing space to grieve and enjoy life. We live day by day, moment by moment, learning how to rely on Jesus in a new way. 

Wednesday, August 28, 2013

Heartache

Jonathan

It's 1am and I'm laying here in bed having a hard time sleeping because I miss you so much. It's amazing to me how disconnected I felt to you while you were in your mother's womb and yet you stole my heart when you came into this world. Seeing you for the first time took my breath away. I'm going to be honest, I was afraid to see you. I was afraid of your birth defects and what they would look like.  But something amazing happened. The second that I saw you and laid my eyes on you, it's like nothing mattered. You were perfect to me and I couldn't stop staring at you. You were beautiful in every way.  I couldn't wait to hold you and feel you in my arms. Even though you had left this world to be with Jesus, your body was still warm as I held you. I just wish I could have seen you open your eyes. I like to think that you had my blue eyes. 

I have shed many tears for you, longing to be with you. I remember when the nurse gave us our final minutes with you to say good bye. I didn't want to leave you behind, I so badly wanted to bring you home with me. I prayed over your body and kissed you on the forehead. One kiss for each of my family members. I sang to you the only song I could think of...

Jesus loves me this I know, 
For the Bible tells me so;
Little ones to Him belong,
They are weak but He is strong.
Yes, Jesus loves me!
Yes, Jesus loves me!
Yes, Jesus loves me!
The Bible tells me so.

I'm sure you heard me singing and it wasn't my best but it was all I could muster up through all the tears. I'm so thankful for your life. How you helped mold me into a better man. I will brag about you till the day I die and rejoice at the fact I will get to be with you for eternity.

Please watch over your mother and I as we grieve. I know how incredibly hard this has been for me and I can't imagine how she must be feeling. She loved you as only a mother could. She cuddles with your stuffed monkey we got you several months ago, longing to have it be you instead. Our journey is just beginning and we have great friends and family surrounding us.

It's 2:00 now and I'm tired, so I'm going try to rest my eyes and hope to dream of you.
I love with all my heart
Daddy

Tuesday, August 27, 2013

Letters

Letters 
My dearest little man,

I still don't have words to say. I miss you. I love you so much. I loved holding you yesterday. You were so precious to me. You laid so peacefully on my chest. Having you near, being able to see your face, stroke your head, feel your hair... those are moments I will never forget. I'm so thankful for the time I had with you. The nurses were so gracious in allowing Daddy and I to just be with you, without rushing you off anywhere. I needed that. I wouldn't trade those moments for anything.

I'm so thankful that you're with Jesus. To my knowledge, you never knew any pain, and I'm thankful that you will never know pain. But that doesn't mean I miss you any less. I love that I will see you again one day, but it doesn't make my empty arms less painful. I'm thankful for the hope of an eternity with you when I reach heaven one day. I just wish I had more time with you on this earth. It's so strange to be here now without you.

I loved that you were giving the #1 sign with your right hand when you came out. You are my #1 son, and you were pointing to where you were going. You were so tiny. Your hair reminded me of myself, dark and full. I'm so glad the nurse was able to save us some. Your face was beautiful and your skin was baby soft. Touching you, stroking your cheek - precious moments to me. Your nose was flat, like Daddy's, and your feet looked exactly like Daddy's. I love that even at your young age, there were definite features that I could attribute to us.

I knew that I loved you while I carried you, but having you in my arms was a whole different experience. You are forever real to me. I'm amazed by the hearts you have touched, by the impact your life has had on me and many others. My heart grieves not having you with me physically, but I am thankful for the truth and hope I have that I will see you again one day.

I love you Jonathan Alexander,
Momma



**Daddy's letter that he posted on Facebook yesterday. We thought it'd be good to have them in the same place.

Dear Jonathan Alexander,

Today was the hardest day of my life. I got to welcome you, my first son, to the world and then had to say goodbye to you all in the same day.

You were stillborn at 7:09 AM, August 26, 2013. Your mother and I got to spend many hours after you were born holding you and admiring your beauty. You weighed in at 1lb 5oz, and towered at an impressive 12inches long. You resembled your beautiful mother though, with a head full of dark black hair. You brought a smile to our faces as you laid peacefully in our arms.

Jonathan you are my heart and soul. I have loved you from the very first day that your mother told me she was pregnant. I dreamt about you day and night and the Lord placed your name upon my heart. Your first name means gift from God and how true that has been. You have been such a blessing to your mother and I and have taught us so many things about ourselves we never knew possible. I never imagined how your little life would have changed my life in such a short amount of time. I am honored to be called your father. Your middle name, Alexander, means defender of men. You have taught me how to fight for life and that every little bit of it is precious. I would have loved to see you grow up to be big and strong; to hear you say daddy; to be able to see you go through school and be there for you when you had troubles with girls (trust me, I've been there); able to wrestle with you; to be able to play video games and get our hopes up over the Chargers football season. Even though you didn't get to live the full life that I had been praying for, you will always and forever be my first son with whom I am well pleased.

I love you dearly and look forward to the day that I get to meet you again.

Love Always - Daddy 


Grieving with us
For those who have commented, please know that every comment is read but I cannot promise replies at this time. We are so thankful for the words you are sharing with us.

Many of you, especially those out of state, have wanted to help. We have set up a fund where you are free to give through Paypal. In the coming weeks, we will be paying for hospital bills, cremation services, and moving costs, as well as the normal costs of living as we take time to grieve our son without the constraints of work.

If you'd like to give, click here. Send to rochelle.miller2@gmail.com. You will need a paypal account. You will be able to type a message to us that accompanies the payment.

Monday, August 26, 2013

From Life to Life


Where can I go from Your Spirit?
Or where can I flee from Your presence?
If I ascend into heaven, You are there;
If I make my bed in hell, behold, You are there.
If I take the wings of the morning,
And dwell in the uttermost parts of the sea,
Even there Your hand shall lead me,
And Your right hand shall hold me.
If I say, “Surely the darkness shall fall on me,”
Even the night shall be light about me;
Indeed, the darkness shall not hide from You,
But the night shines as the day;
The darkness and the light are both alike to You.
For You formed my inward parts;
You covered me in my mother’s womb.
I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.

Jeremiah 139:7-14

Thank you, God, for desiring us, enough to create us, to love us, to protect us, to guide us and comfort us by your spirit.  You are good.  No, great.  You exchange our sorrow for Your joy through the work of Jesus and Your great love permeates our beings as we rest in Him.
Today Danny and Rochelle’s sweet baby boy passed from life to life.  From his warm mother’s womb to his Heavenly Father’s caring arms, Jonathan is in the presence of Jesus and we joyfully anticipate spending eternity with him in Heaven.  This morning at 7:09 am he gave us a glimpse of his beauty, at 1 lb. 6 oz., a head full of dark hair and a button nose just like his daddy. Rochelle held his warm little body and together with Danny a mommy and daddy fell in love with their baby boy.  Friends came to meet Jonathan and I had the privilege to hold him and witness the peace that he exuded. Oh to be in the unhindered presence of Jesus! I couldn’t stop imagining the glory he was witnessing in the spirit as I held him in the flesh. We praise you God that you are a God of life and Jonathan will know nothing but the good life.
Danny and Rochelle have been my husband’s and my best friends over the past four years and growing in faith and truth with them has been a blessing. Between Danny’s compassionate heart and Rochelle’s unshakeable faith we knew that no matter what happened God was going to uphold them every step of the way.  We are thankful that the doctor’s bad news is over.  The waiting is over.  The emotional war is over. Now there is expectant hope and complete confidence in a glorious reunion with Jonathan.
      I know they greatly appreciate your prayers and kind words. Thankfully, Rochelle is recovering well and they are expecting to be discharged from the hospital later today.

Written by McKenna Thibodeau

Saturday, August 24, 2013

Understanding

It has been a very full week for us. We went into our appointment on Wednesday with high hopes and careful thoughts about reality. We came out with something much different than we expected, causing much heartache and frustration.

Wednesday's ultrasound check-up
We were told that Jonathan's defects haven't changed, which didn't really surprise us. Our hearts had hoped to see something different, but we would continue to pray, no matter the outcome. We were able to ask questions and the Dr. showed us the different defects on the monitor. We were also given this picture:

The big balloon-like sac on his stomach is the omphalocele. It's growing as he's growing, and the Dr thinks that his liver is now inside the sac as well. He is measuring 1lb 6oz, about 3 weeks behind a baby his age.

We were prepared for this information, but what we weren't prepared to hear was that my cervix had started to shorten. I measured at 1.5 cm, when I should be at 3-4 cm. I'm also carrying excess fluid. This is mostly because Jonathan's body is not processing fluid like it should so I'm holding it instead. Also, the hard spots on my stomach we thought were Jonathan moving, are actually contractions. All these things made the Dr. concerned, as they point to preterm labor. She could not give us a time-frame as every pregnancy is different, but it caused her enough concern to schedule us with the pediatric geneticist on Friday before he would be out of the office for a few weeks.

Hearing the news about how my body is beginning the labor process was hard, but even harder than that was how the Dr. responded to our questions. She was very concerned about us seeking to understand how severe Jonathan's defects were. We believe she was afraid we were going to take every possible means to save his life, even if it meant putting my life at risk. The way I heard that, made it seem like Jonathan was no longer being considered as part of the equation.  This made me go into mama-bear mode and become quite defensive later as I spoke with Danny about options.

Thursday night
Danny and I had some serious discussions as we tried to come to terms with all the news. It was a night of missing the mark in our understanding of each other. I was coming from the side of protecting Jonathan and wanting to prolong his life. Danny was looking at it from a sense of our family as a whole, and wanting to spend time with Jonathan instead of having him taken away from us to have surgery. We both felt frustration as we grappled with how to be united when we felt so divided.

Friday
We set aside time to meet with a pastor from our church, knowing we needed to connect with each other before talking with the pediatric geneticist. It was a tremendous blessing to have a mediator to be able to hear each other, understand, and realize we wanted the same things. Ultimately, we both want as much time with our son as we can get. We also recognized we had a lot of unanswered questions when it came to the next steps of this pregnancy.

The Dr. we met with started off by saying that his job was to help us understand our options, and to be completely objective. He walked us through each of Jonathan's problems and what could be done for them. He then talked about the problems babies face who are born prematurely. Also, he explained to us how medicine has advanced in recent years to help premature babies survive. Finally, we talked about the combination of Jonathan having Trisomy 18 and being a premature baby. We discussed how his condition complicates the ability to do surgeries because of how small he could be at birth, and how his lungs might not be developed enough to undergo surgery.

He treated Jonathan as a child, having concern for his life, and left out his opinion. This was an answer to our prayers. On the car ride to the appointment, we had prayed for someone who would present objective information without providing their personal bias. We were so thankful for him walking us through the process, along with the fact that he brought up some questions we had never considered.

Outcome
Danny and I took time to discuss our options about Jonathan's birth, and what we would like to do once he's here. We want to spend as much time with him as we can, with as few tubes and machines as possible. If Jonathan reaches 4lbs, we will re-evaluate our thoughts about how to care for him, but at this point we are anticipating making him as comfortable as he can be for as long as we can have him.

We are at peace, and we are united in our decision. We have not given up on who God is and still believe completely in His ability, and desire, to heal our son. We needed to understand the coming process to make decisions with more wisdom and peace. We are thankful for what we're learning about each other, and the greatest understanding that God has not, and will not, change.

Personally, I have come to realize the great difference between talking about my faith, compared to talking about whom my faith lies in. My faith means nothing if it's not in Jesus, and I found myself talking more about my faith than about Jesus. I think I was becoming prideful in what I thought about God, what I know about Him according to His Word, instead of relying on Him. I am reminded that in the midst of believing full well that my God is the Great Healer and that I have the power of the Holy Spirit living inside of me, I also have full access to a Father who wants to comfort me as I deal with a situation that is bigger than my own shoulders.

We don't always understand why things happen on this earth, like why there are extra chromosomes. It's ok to not know, because we have a Father who loves us. Psalm 100:5 says that the Lord is good, and that His love endures forever. He always wants our best. In the midst of not understanding this situation we are in, we can rest in the knowledge that He is with us, giving us strength and courage to push on. Deuteronomy 31:6 says to be strong and courageous because the Lord goes with us, never leaving or forsaking us. We don't have to be afraid of what's to come.

What's next
I have not been put on bed-rest. My belly is like a water balloon - the more it expands the harder it is for my cervix to remain closed. Bed-rest wouldn't help this. I am working on being more careful around the house and not lifting things. This is very difficult, especially as we move across town next weekend, but worth the discipline.

26 weeks
I will be having an ultrasound every two weeks, the next one on September 3rd, and will only see the perinatologist from now on. We are watching for signs of labor, praying that my body holds on to Jonathan for as long as possible.

We have been so blessed by those who reached out this week, for walking this journey with us as it gets harder and more complicated. It has been beautiful to see how He laid us on your hearts during this rough time. Thank you for being the hands and feet of Jesus.

Monday, August 19, 2013

Prayer request

I realized that I have included you on this journey after things have happened, but I have not let you in on what's to come. This Wednesday, at 4pm, we see the ultrasound specialist. This will be our first ultrasound since getting the initial diagnosis about everything going on with Jonathan, our second visit with this Dr specifically.

We saw the nurse midwife 2 weeks ago and heard his heartbeat. Even though we went in expecting to hear it, there was definitely doubt and fear that clouded our thoughts and minds as we awaited that day. Hearing his heartbeat was a welcome breath of fresh air.

Knowing the emotions that came with that week, we are feeling them intensified this week. We have been praying and believing for healing, for it to happen within the womb. As I was processing today, I realized that as much as I'm hoping for great things though, I can't go in with any expectations. The only thing I can hold onto is the truth that who God is will not change based on the outcome of this ultrasound.

We are hoping to see a difference, hoping to see the cleft lip closing, the hole in the heart closing, and the intestines back inside the stomach where they belong. It would be amazing to see his hands open and close. I'm also simply hoping for better pictures of him to share. There are the fears that everything will be just as we left it over a month ago.

This is a week of fighting for truth, fighting through emotions and fears, fighting for faith and hope, no matter what we see with our physical eyes. We need your help. Will you pray with us?

1. Strength to cast our cares on The Lord because He cares for us
2. Strength to fix our minds on what is good, holy, just, pure, and excellent and allow His peace to comfort us
3. Strength to walk by faith and not by sight
4. Strength to worship The Lord no matter what

I hope to update again this weekend.

Sunday, August 11, 2013

Processing

It's been a month since our son has been diagnosed with multiple birth defects stemming from a diagnosis we now know to be Trisomy 18. We have been living life day by day, experiencing a roller coaster of emotions and processing through many thoughts.

The initial reaction for us was shock and grief. There was a flood of tears as we sat in the car following our second ultrasound. You expect to see a healthy baby. You never anticipate something being wrong. Yet, in that grief, we knew that God was good. We clung to the truth that He was not mad at us, and that He would be with us.

As the days have come and gone, we find ourselves on a journey we never dreamed of. There are times of grief as we think about the future and the what-ifs. There are so many of them! Will he make it to birth? Do we put him through the trauma of surgeries? Will we get to bring him home, or will we have to bury him? I'm sure you can imagine many of the scenarios and possibilities that we have to think through. Our normal doesn't feel so normal anymore.

And yet, we are experiencing the normal parts of being pregnant. We enjoyed hearing his strong heartbeat at our recent appointment. This weekend we had fun playing "hide and seek" with him, as he moved around my belly pushing against my stomach. We look forward to seeing him again at our next ultrasound in a week and a half. We talk to him and sing to him, making memories along the way. We look forward to having baby showers and preparing our new apartment, believing for the day he will come home with us.

Recently, the old hymn, "My hope is built on nothing less," has been a regular song in my heart. Phil. 4:6-9 says not to be anxious, but to pray and let the peace of God guard your heart. It tells me to fix my thoughts on what is true, honorable, right, lovely, and pure, and then the God of peace will be with me. Peace is one thing my soul has needed most during this time. Romans 12:2 has also been helpful as it tells me to transform my mind according to God's Word and not to the world. I am reminded that I have power to overcome the negative thoughts and focus on the truth that Jonathan has hope.

We are thankful that God has not changed, and will not change, based on this circumstance. Still, on those days when doubt and sadness creep in, we have greatly appreciated family and friends being there for us. Jesus calls the Church his hands and feet and when you reach out to spend time with us, to offer us a gift, or do whatever the Lord has laid on your heart, we feel God loving on us.

In all of this, we are walking a fine line of thinking about the negative possibilities about Jonathan's life and needing to plan for those things, and yet keeping a firm grasp on the hope of Jesus for his complete healing. We ask you to keep walking with us, to keep asking questions and allowing us to laugh and cry with you as we experience the many ups and downs of this pregnancy.

Week 24

Thursday, August 1, 2013

How you can help

Since finding out the news about Jonathan, we have had many people ask us how they can help, or what they can do. As we continue this journey, we have learned what we need.

First off, Danny and I have come to a place of believing for Jonathan's complete healing. We thank everyone for standing with us in prayer. We are hopeful and recognize there is a fine line of faith and thinking about the possibilities, which I'll address in another post.


As for helping, one thing we have really appreciated is time spent with people. This allows us to share our emotions and thoughts freely. We recognize this is not an easy journey that we are asking you to join us on. We rely heavily on the Lord and each other, but we need all of you. We need people who will allow us to be open and vulnerable, loving us by asking questions and sharing in Jonathan's story.

We also find it's good for us to keep having fun with others. One great example would be to ask us to dinner one night. We also enjoy games. Ultimately, we just need to keep laughing and experiencing life with you. With everything going on with us, we need your help to plan these times.

Finally, we are working to focus on Jonathan's story of life and hope. Knowing he's been diagnosed with Trisomy 18, we have read and heard stories of other families that have gone through the same thing. At this time, it's difficult for us to keep hearing these stories because it brings doubt where we want to stand strong in faith. While we appreciate the thought in sharing these stories, we ask that you think about the potential effects on us.

These are just a few ways that you can help us but there are many other ways to reach out. Know that we appreciate any support that you give and are truly thankful for what's already been done.

Saturday, July 27, 2013

The medical information that has changed our lives

As most of you are probably aware, we found out in late March that we are expecting our first child. We have waited for this special occasion for many years and were so excited to learn this news. Unfortunately, we have come across some complications. This blog will turn into a place where you can follow the journey.

Our first ultrasound was done at 18 weeks, 6 days, on July 5th. The tech let us know at the end that we would probably be having another ultrasound done soon, but wouldn't tell us why. We got a call from a genetic counselor the following Monday, letting us know the concerns, and set the next ultrasound for July 12th.

What we found out


First, we're having a boy! We were hoping for a boy as we tried out many girl names and nothing felt right. Jonathan Alexander is his full name. Jonathan means gift from God and Alexander means Defender of men.

Second, the dr found some birth defects. She saw a bilateral (or double) cleft lip, a VSD (or hole in the heart) which causes blood vessels to not be in the right spots, clenched fists which causes concern for neurological and brain development, an omphalocele which means his intestines are poking out of his stomach in a sac, and 2 blood vessels instead of 3 in his umbilical cord. They also say that he will probably have severe mental disabilities.

The "constellation" of these findings points to something called Trisomy 13 or Trisomy 18. Trisomy 21 is when you have Down Syndrome. 13 and 18 are more rare, and more severe. Even though each of these things can be operated on, it becomes a question of how much can an infant take. The hardest part was hearing that the rate of survival is 10% within the womb, and 10% outside of the womb.

After some research, we have found that boys diagnosed with Trisomy 13 or 18 have less chance of survival than girls. We have found that most babies who come full term only survive a few days, weeks, or months.

The dr's recommended an amniocentesis to help provide an official diagnosis. This test would also help us know what our chances of having another pregnancy like this would be. There is nothing that can be done for Jonathan, medically, inside the womb. The genetic counselor could not see anything initially indicating that Danny or I are carrying a gene that would cause this. If that is true, it would simply mean that this happened by chance and neither of us did anything to cause this.

Amniocentesis


We decided to do the amniocentesis and had the procedure done on July 24th. It was pretty quick, fairly simple, and somewhat painful. They stuck a long needle into my uterus around my belly button and used the ultrasound to make sure they weren't going to poke Jonathan. It took about 90 seconds to pull out enough amniotic fluid. Jonathan is already sloughing off dead skin cells, which are hanging out in the amniotic fluid. This is the DNA they tested.

We got the results of the FISH test, which is a faster version, on Thursday afternoon. We will get the full results 10-14 days from the 24th. The preliminary results show that Jonathan has Trisomy 18 so this is the current diagnosis. This doesn't change the information we already had, it just gives it a name and leads us to initially believe that Danny and I are not carrying any genetic defects.

What's next

As we continue down this journey, we'll keep updating this blog. We greatly appreciate all the love, support, and prayers we have already been given.