perspective

It's not very often I run across someone with a similar life to mine.  Yesterday I met someone, she is was the house guest of our neighbor, and she has a son that is kind of like Calvin. Actually a super lot like Calvin.  It was amazing to connect with this woman who has had almost double the life experience I have (her son is almost 2x older than Calvin). She is an amazing mother who has worked hard, suffered a lot, and put her heart and soul into her family. She has faith and courage  and love.  One thing she said is that even though it has been hard, it is amazing to look back over how far they have come from 5 or 10 or even 17 years ago.  I hope  5 or 10 or 17 years from now I can look back and see that we have made progress, that we are in a good place and that I'm happy with how far we've come and have some hope for the future.

I feel like we are in a hard spot in our journey. It's been long enough that I am tired. The newness has worn off, the hope that something new is going to come along, in terms of diagnosis and treatment, is gone. Now we are left with a long stretch of life in front of us and I'm not sure where it's going.  We are not reaching the same milestones as other kids that are about to turn 13 in school, social, or any other setting.   I am in a rut with my mothering and my patience.   Talking to this other mother who has walked a similar path for even longer made me realize that there are small and large  victories that need to be appreciated.  The grief of always being off the path of "normal" kids and missing major developmental milestones is real and it is hard and it will probably never go away. but instead of embracing that pain, I can celebrate the small victories and changes we see which move us in a positive direction.

I recently read the book Edurance by Alfred Lansing about Shakeltons journey to Antarctica. I highly recommend the book! There was one part of the book that really resonated with me in relation to my journey in parenting Calvin.  One of the most amazing aspects of the expedition was that the crew stayed so positive and morale was generally very good, even though they were in very real danger for most of the trip. I think part of this was attributed to the fact that they did have confidence in themselves, did believe that they would eventually be rescued, but they kept that hope at bay by keeping that hope in the future and not settling on a date they thought they'd be rescued or a specific distance they would cover in a day. They just always had hope that they would eventually be rescued.  There were a couple of points in the book where the men got very excited about the prospect of hitting land, but then the opportunity  passed them by. The depression that set in following these setbacks was almost crippling. They learned from this experience to stay hopeful and have faith that things would work out but not to set terms and dates for specific achievements.  Near the end of the book part of the team had gone ahead to get help and most of the men had stayed behind waiting to be rescued. It was torture to just sit an wait knowing that if the rescue party did not make it back they would definitely die.  They had calculated how long the rescue should take and started planning for the rescue to come within a few weeks, waiting with great anticipation. As the date they had planned on for the rescue came  they realized they would be completely crushed if the rescue did not come in time, they instead set a date to hope for the rescue to come several months into the future.

I have noticed this same thing happen in my journey with Calvin.  Whenever I set up comparisons, milestones I hope will happen, or progress I hope to see, I am extremely disappointed as that dreamed of progress passes us by. I try not to think about birthdays that come and go, what grade he's in, what he could have been doing by this point, what life we are missing out on.  We just live day by day and hope that each day is a good one where we learn a little more and float in a good direction.

Looking back from 2-4 years ago when we were really in a tough time, there are some great improvements.  Calvin sleeps really well. He can stay home along sometimes.   His behavior at school is good. He has a great school where he is happy and has friends. He likes his karate class at school and works hard in that and is proud of his progress. He can do legos for 8 hours straight.  (If I could afford it, I'd have legos for him to do every day).  We have good drs.  We have good insurance so we are not in financial ruin.  (many families with kids like calvin have very serious financial problems. so far, we have been very lucky in that regard).  Our insurance pays for our medications.  (If not, we'd be paying probably 2-3K/month for them). Calvin hasn't had a seizure in years.   We have lots of good things going for us.

Circling back to my new friend. She had a few suggestions of things she did well or wished she had done better for her family along their journey when kids were younger.  Make therapy more available to the siblings.  Talk openly with the other kids about the struggles you face.  Surround myself with great women.