In March of 2012, I had written a blog post about how we as a family live and cope with my husband’s neurological condition called CIDP.
I feel it appropriate to update this post because he does not have CIDP.
But why did it take me so long to write this? To be honest, sometimes we just don’t want to talk about medical stuff. It does not define our lives, it simply becomes a part of it.
Anyhow, few months after I wrote the blog post about CIDP, he was re-diagnosed with MMN. Multifocal Motor Neuropathy.
After having researched this condition and undergoing some horrendous medical procedures, and blah blah blah, in the end the drs doubled his treatment dosage and changed it from every 3 months to monthly. This made a world of difference! And he changed it to monthly because that is how it is done in the USA and my husband pushed for it.
This new monthly treatment made it possible for him to no longer use crutches! I felt I had my husband back. Our spirits were high and life felt pretty normal again, even though he still could not work, he could walk. He was stronger. He could play with the kids. He could use the stairs.
I remember one day specifically. My sister had offered to watch our two young sons so we could have a lunch date. After everything we had been through, we could not stop smiling that day. We took the bus to the mall, had lunch there, walked around for a little bit and went back home. We held hands. We raced up the stairs at the train station. We laughed. We were living a miracle.
During about the same time, my papers were complete for us to move back to the USA. Yes life was so much better, but there were still unanswered questions and his diagnosis not very firm.
Now we are back in the states. He was seen by the head neurologist at Cleveland Clinic and spent an afternoon undergoing extensive testing for a firm diagnosis. Which is now: Symmetrical MMN with conduction blocks. Even he, the head neurologist, had not met anyone with this condition before. It is more common to be asymmetrical.
Anyhow, life goes on. As normal as we can make it.
We focus on the things we CAN do and not on the things we cannot. We live for the simple ways of having fun: splashing bubbles in water, scooting around on our wood floors, going to the park, having an ice cream and good old conversation! I love Q&As with my husband and my kids! I love the simple things. And a simple life. I even like to cook simple. Dress simple. Why complicate it?
In the scriptures there is a verse that says consider the lily and all her beauty. I am convinced the lily does not complain that she wasn’t taller, or as pretty as the rose, or was another colour, or lived in another part of the field. We can be the same. We can be happy and grateful for all that we do have because our blessings will always outweigh our trials.
I know I have my moments of stress and I break down. I know we have had a depressing winter and sometimes reality slaps us hard. But I also know we are going to be okay. Some questions cannot be answered. And that’s okay too because we have God and prayer and each other.
Life is full of surprises and sudden turns. I used to say that everything happens for a reason. But if I am honest, sometimes I don’t want that either. So I will instead try and learn something from this experience.
On a note about my husband, he is the one who suffers this everyday. I do not always know how he is feeling, but I know my heart has grown softer with compassion. Not just for him, but for everyone. Not only those who suffer other forms of disability, but everyone. Because everyone is fighting a battle somehow. Everyone is faced with adversity.
Our boys are young and don’t know any different. This is OUR normal. Our world. Our life.
And life is good.