Friday, August 7, 2015

Keeping Going

I am thankful today that our little one is still with us. Each day is another day we have had with him and we are trying to rejoice in each one. Our day to day lives have not changed that much but our mindset and future look so different now.

Each day we have to trust in God's goodness and plans for us. There are days (probably about once a week!) when I feel like it is too much, it is too hard but God always pulls me through and gives me peace.

I admit that I haven't been very good about spending time reading the bible and praying lately and that has (I believe) been part of why it has been so hard for me to work through this. My sweet husband became aware of this and encouraged me to spend more time in prayer and to make sure to read my bible. In the last week or so I have been trying to do that more and have felt so much more peaceful about everything. I still have to moments when it is hard but in between I am resting in God's grace and goodness.
Around the time of our last appointment in Seattle our midwife let us borrow her spare doppler to use when needed. That has been such a blessing! Even though I feel him move around, his movements are light and hearing his heartbeat is so reassuring!
Unfortunately in the last few weeks we have caught more and more that his heart will go into short segments of missing beats (e.g. 4 separate beats missed in 10). We were able to confirm with Ali that that was what we were hearing this Wednesday. We are not professionals so we do not know what this means for us but with it increasing in how often it happens and even how long it happens we are beginning to wonder if we are losing him slowly. I am grateful that he still moves around though has good days and bad days and good weeks and bad weeks as far as how much he moves (and reacts to external things). Feeling him move is something I will miss very much if he passes on.
Each day is a new day. A day to learn to trust God, to learn to give up the dreams that I had, for something unknown but better from Him. Sometimes it is hard and sometimes it is easy. A lot of the time I had no idea how much I wanted those dreams and I believe that God is using this time to teach me to let go of those tightly held dreams.
Our prayer requests right now are: Continued grace and strength for each day, that the fluid around his lung would become less and would not move to his other lung, that his heart would become stronger and stop missing beats,  that the cysts in his brain would continue to get smaller and that if God chooses for Matthew to pass away that we would be content with that. We also want to praise and thank God for the many gifts that we have received from those around us (among which were the pictures in this post) and for the love and support that everyone has shown. We are not through this yet but God has always provided what we have needed right when we have needed it.
Photos courtesy of Ordinary Joy Photography


  1. Jon and Jessica, I am reading Quiet Confidence For a Woman's Heart by Elizabeth George. It is a book on the power of God's restoration and healing through the Psalm 23. I am praying that as you are walking through this valley that you will not be afraid because Jesus will bring you to HIS rest in green pastures and HIS peace besides quiet waters. Thank you for your faithful example of trust and obedience in God.

  2. You are all apart of our daily prayers. Thank you for keeping us up to date with your prayer requests. We can't even imagine what you are experiencing but we do know that we serve an awesome God who never leaves nor forsakes us. Most importantly He is with Matthew as well. May each day bring more comfort and more peace.

  3. I don't know you but I somehow came across your blog and thought you might be encouraged by the story of a little girl with Trisomy 18 who has already lived to her first birthday! You can search facebook for "Baby Noelle Buller" to see her story. Her parents are believers as well and many prayers have been answered for baby Noelle!

  4. Praying for you Jessica and John. You look very pretty!
    Mrs. Segar