Our wedding day passionate kiss!
My heart hurts. Not like call 911 because something is wrong, but the aching sort of pain. There have only been a few other circumstances where I could say that I physically could feel the hurt. The death of my grandmother, living far away from Jason while we were dating, and waiting on a baby. And as the first sentence says it hurts now.
Nobody could prepare a parent to deal with the news that their child has an unpredictable disorder. For that reason nobody can tell you how you will react. There is an element of all the doctor's appointments, medical knowledge being thrown at you, really hard medical decisions, and just fear that causes so many emotions that a person does not know how to respond.
This turmoil often causes us to respond to each other with angst. Yes that is right we are sometimes so frustrated and angry about everything we end up fighting with each other. I imagine that many people in the situation we are in have similar responses. About once every two or three months something will come up and all the stress from it will build up and explode some night after Abigail's in bed.
Last night this is what happened. I am worried because Abigail runs a fever...a lot. She has had one over 100 for over a week. There only other symptom is a slightly enlarged lymph node. I start to look at what can cause this in a child with nf. There are only a few possibilities listed. I have talked to other parents who have kids with nf and they have had lots of unexplained fevers. Perhaps it is just some sort of fluke that no doctor has ever recorded. Perhaps there is something else going on that we need to investigate more.
Talking about this and what the possibilities are causes us both to be scared and lash out. Nobody tells you about this part of nf. The part that affects families emotionally isn't listed as one of the things that could happen with nf...or any other issue that a child may have. It's the thing that can bring about division in family.
We have talked since day one about how important it is to be okay with the fact that we deal with this differently. Studies show that when a family loses a child or deals with a chronic illness the reason for higher rates of divorce is because each person is frustrated that the other person is not dealing with it "correctly." We both need room to respond how God made us to respond. I tend to research everything. I need to talk to people who are dealing with it as well. Jason seems to be able to take things as they come.
Even being aware of this and intentional we still sometimes get frustrated with the other person and end up fighting. I hope that as we move forward into this; the fighting over this decreases...as it has with everything else. No matter what lies ahead we will persevere. This is one of the beautiful things about our marriage. In 5-1/2 years we have been through much, and with each trial we grow stronger, and closer together.
After an hour and a half of talking, me crying, and some raised voices last night all I could think is I wonder how many other people going through things feel lonely like this. At the end of our discussion we were both fine. We had come to a point where we acknowledged that how the other person felt was good. In the end we both want what is best for Abigail. Knowing that makes it easier to work through what the other person believes.
So the true reason for this post was just me thinking about how many other families are dealing with this exact same thing. How many other people feel lonely and frustrated and wondering if their reactions to what is going on is normal. I would say yes. Whatever your reaction is...anger, frustration, sorrow, fear, whatever it is normal and acceptable. It is okay sometimes to lose it with each other as long as you come back together in the end.
I want others to know that the only reason we are making it through this is because we have Christ. There is no other way that our family would make it through this or have any reason to make it through this.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 16-18
Looking forward to the eternal as we may our way through the seen,
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