What I would tell the mom grieving her baby.

Hi baby girl,

I just read on Facebook that another sweet angel joined you recently because of VOGM. I'm sure you have met. I read what her momma and daddy write and my heart breaks for them. I know their pain, so close and so real. It makes me think of you and our time together. This little angel blessed her parents with a beautiful month, just like you blessed us.

So many times in the past 10 years I have spoken to and walked with and prayed for parents and grandparents who have lost a sweet child. Each time I shudder at the memory of the pain. There is nothing I can do for them to ease the pain and in the end they won't want it eased anyway. Because one thing we don't talk about is how the pain is really a blessing. I can't even really explain it.

If I could talk to this mom, I would tell her that it's ok to be mad. It is ok to hurt and to cry and to scream and to ask God why. He is not afraid of our emotions, He created them. The thing we have to try to figure out how to do is to still trust Him in the midst of all that doesn't make sense. Faith doesn't mean we understand everything He allows, it just means we trust Him even when we don't understand.

I would tell her that I don't know why babies have to die but I don't think it was really God's plan in the beginning. He wanted us to live eternally with Him, but we chose to rebel from His plan and now we have to have sickness and death. But I do know that if we put our trust in Him, we will have that eternal communion with Him and all those who also trust Him.

I would tell her that she will smile again, and she will even laugh. It will be a long while before that happens. One day, she will look at pictures and her heart will ache but it will be a sweet ache of the beautiful time she had with her sweet angel.

I would tell her that some day she will be able to reach out and offer comfort to another momma who is grieving the same way. It will be scary and it will hurt and she will feel inadequate but the opportunity will come. And after, she will see a small glimpse of the purpose for her own pain.

Of course I don't know this momma and only heard of her on Facebook. But these are the things I would tell her, if I did know her.

Say hello and tell her all about what it is like there. I look forward to meeting her and seeing you again when the time comes.

I love you baby girl.

Love,
Mommy <3

Saying goodbye......

March 28, 2004 was a Sunday and we went to church as a family.  The hospital called on the cell phone while we were there and I knew it was bad. They wanted to see us both that afternoon. We took the kids to lunch and then drove them home before making the drive to Marburg.

When we arrived they told us that she had been struggling all night long and that the tube was causing pain in her nose. They asked us again about intubation and life support, informing us that it would not change the outcome but it may make her more comfortable.

With a peace that only God could give, we decided to remove the large tube in her nose and replace it with a smaller one. This would of course reduce the amount of oxygen but it would make her more comfortable.

They also told us that they had cleared a room and we could stay with her until the end. The removal of tube was done and we were quickly ushered to the room. 

There were 2 nurses hovering over us and 1 more in the wings as well as a doctor. At the time I didn't understand but I later learned that they weren't even sure she would make it to the room. Eventually they left us alone.

We had her to ourselves! Throughout the night someone would peek in but for the most part we were finally alone with our baby girl. I treasured every moment.

The next morning, a doctor came by and told me that they were surprised at how well she did. We were cautiously celebrating. After an exam, it was evident that not much had changed. I believe that night and day were God's gift to me. He knew I needed some time and He graciously allowed me to have it. I spent nearly 24 hours with her.

One of the nurses made this card for us.

At the end, I whispered to her how much we loved her as I stroked her sweet head and tears streamed down. She peacefully took her last breath held closely against me.

As I reflect on that day, ten years later, I am still in awe of God's grace and love and His constant presence. Throughout this journey, He has been by my side every step, even when I don't feel it. 

At her service on May 15, 2004

And I know without a doubt that she is there in heaven, with our heavenly Father and her earthly father, awaiting our glorious reunion. Heaven is a little sweeter to me with a piece of my heart already there.





Thank you to my sister and her family for visiting and placing flowers today! I appreciate the thoughtfulness.

The last few days

Ten years ago today, Cortnie and I went to visit Mollie. It had only been a few days since we almost lost her and I was still raw.

I was pulled aside by the doctors to discuss her current state. They informed me that many times throughout the night her levels would drop and she would be moments from death. They knew my desire to be with her when she took her last breath so they suggested I consider staying in the area rather than driving the 1 hour home. They were fairly certain the end would come quickly and I probably wouldn't make it in time.

I was shattered. I knew this was coming but it was as if the last ray of hope had been removed. I was so angry and scared. But I had to be brave. Cortnie was with me and she was only 10 years old. I couldn't explain to her what I couldn't understand myself.

We drove home in silence as I tried to figure out what to do.

Today I learned that a sweet baby boy was born in New York with a Vein of Galen Malformation. I don't know the details, just that he is not well. He is in the presence of a doctor whom I have heard a lot about in the past few years. A doctor who is a miracle worker when it comes to VOGM and for that I am thankful. Most importantly he is in the hands of our God who is the ultimate doctor and miracle worker.


As I reflect on my sweet Mollie and her life, I remember that God is with me too. He was there 10 years ago and He is here now. Although my hands are shaky as I type and my eyes fill with tears remembering the pain, I am comforted by the fact that God has and will continue to bring me peace.

I think of the family of the sweet baby boy who is in NY fighting for his life. I know they are scared and anxious and confused and feeling a myriad of emotions right now as they fervently pray for their baby boy. I can, and have, reached out to them. To pray, to listen and to offer words of encouragement. And for that, I am honored. This is not a road I wanted to be on, but it has given me the ability to encourage and support others.

Please join me in prayer for this little guy and his family.

Thank You Lord that You are a God who sees and a God who knows. Thank You that You are a God who heals and comforts. I lift up this precious baby boy and his family to You. Bring him healing. Give the Dr. wisdom and direction. Give his family peace and comfort.
Amen

Remembering.....

It is hard for me to believe sometimes that it has been 10 years. Some days it seems like it was just yesterday and other days it seems like forever.

At this point in Mollie's life, 10 years ago, she was not doing well. We had gone from hearing before her birth that the situation was drastic and she probably wouldn't live 24 hours to 'she is doing so well we can put off the embolization for a few months, maybe even a year' back to 'there is nothing more we can do and we don't know how much time she has'.

Doing well!!

Just a few days later.

I was angry, hurt, discouraged, frustrated and exhausted. It took all I had each day to go visit and say goodbye, knowing it may be the last time I saw her alive. It was a very dark time. Her dad couldn't deal with it at all. The day we visited and she almost died right in front of us was to much for him. Her levels dropped so low and even the nurse was crying as they tried to stable her. We stood there and watched, my heart breaking and everything moving in slow motion. He told me that he knew he couldn't handle watching her die before his eyes and he would not be visiting much anymore. It was a time I had to walk alone, except for the Lord who was with me at every moment.

The other day I was talking with Dan about Mollie and how I am feeling this year and this post and grief. I shared with him how I sometimes feel like I shouldn't share my story or maybe shouldn't share it so often. Maybe people are tired of hearing it after ten years. I'm one of those people who care too much about what others think of me. I have also been deeply wounded by insensitive comments in the past. I don't want impose on others. I don't want to bring people down or appear as a whiner. He reminded me of the people who have shared about how Mollie's story encouraged them and helped them. Mollie's story, and my story are not for me alone.

God has given us each a story that He wants us to share. He orchestrates our lives. He has a plan and sometimes that plan is to simply share what He has done, the good and the bad. If we only share our triumphs, we are not painting a realistic picture of God.  It was also a time when I fully surrendered to God. He revealed so much to me about Himself and about myself. He continues to do so.

I have also realized that talking about Mollie and her life is healing for me. I will keep sharing about what God has done and continues to do. I will continue to reach out to those who are hurting and lost and scared. I pray that I will be an encouragement and not a stumbling block. As I remember her short life, I realize how far the Lord has brought me. He has changed me and shaped me and grown me so much in the past 10 years. Although I wouldn't chose to walk the path I have walked, I wouldn't change where I am now for anything.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 2 Corinthians 1:3-4