Help and healing

After trying to resist for over an hour, I'm just going to put my swirling thoughts onto virtual paper, even if it is the wee hours of the morning.
We had a meeting with our pastor couple this week. A number of things came out of that conversation but one that has been rattling around in my head is the the topic of prayer.
I've been hesitant to post publicly about our current situation out of fear of judgement and what people might say that could hurt me but am realizing that while that hesitation comes from a place of self preservation it is actually harming us. So, here it is.
Early in June we found out I was pregnant. This was thrilling and terrifying at the same time. Elianna's genetic condition has a chance of occurring again for us in future pregnancies because Michael and I each carry a mutation on the same gene. We chose to have prenatal genetic testing, which included a trip to Toronto for a CVS procedure, where a sample of placenta is taken for DNA analysis (placenta is the same DNA as baby). The results from that test came and we were given the difficult news that we were having another child with the same disorder as Elianna, Zellweger's Syndrome (more correctly known as Peroxisomal Biogenesis Disorder) and baby is another girl. Since many have asked, this kind of testing is 99.8% accurate. A new grieving process has begun, layered on top of mourning Elianna, whose first birthday was celebrated shortly after we received this news.
This summer in the waiting was indescribably difficult. The burden of the news has felt utterly crushing. The challenge of planning for the birth of baby Eli (Milena's nickname for baby, it means 'my God' which feels so fitting) has felt insurmountable.
Prayer has been difficult for me. I know God can heal because of what I read in the Bible, but I know that doesn't mean He will. Even though I would love nothing more than to have a child that I get to keep for a lifetime, I might not get that. Somehow, since begging God for a healing miracle has, to me, felt ineffectual and too difficult to hope in, while at the same time preparing for what we know to be true, I've stopped asking for His help altogether. No wonder my burden feels crushing!
And, out of fear, we have kept this burden to ourselves. Never more than now do I understand what scriptures references to the body and carrying each other's burdens mean. During Elianna's life, many people from different parts of the world were praying for us and we felt carried through that challenging time. Many people contributed practically in hands on ways, but many more prayed. We felt it. It truly did sustain us and carry us through a difficult journey. I acknowledged this often during that time and yet now, in the present I had somehow forgotten the value of those prayers. The practical help is also vital but the prayer, while less tangible is no less powerful.
This is what I am realizing now. That rather than feel guilty over my own lack of prayer, I need to reach out and rally the forces, admit my injury and allow the body to do it's work and come to my rescue. I'm still in shock on many levels. I feel incapacitated and numb. In my own lack of prayer I haven't even known how to share or let people know what to pray for or about. I am at a loss for words much of the time. Our pastor mentioned the story of the man who asks Jesus to heal his child, he says, "I believe, but help my unbelief."
This is now my personal request to God. And, I ask that you would pray for us, for God's sustaining presence in our lives through this dark season of mourning. Your prayers will carry us and your presence in our lives will speak love in bold ways to our hearts.
Another thing that was said at that meeting:
Anxious in nothing.
Prayer in everything.
Thankful in anything.
Peace.

My biggest struggle has been feeling anxious (that's for another post sometime) and a deep lack of peace. We had those things during Elianna's life, a peace that felt surreal. I believe it was because of the powerful prayers of many people praying on our behalf.
To bring it back around to the title of the post. Help and healing. This is what we are asking of God, please join us.

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