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

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.

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

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.

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.

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

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.