Just Brylee

Over the last several years I have grown to love a show that airs on PBS titled, “Call the Midwife.”  It is based on the memoirs of a woman named Jennifer Worth who was a midwife in London in the 1900’s.  I know it is wildly popular for some due to the fact that it is full of drama and history and always keeps you on the edge of your seat.  For me however I have grown to love it because it is so very real.  Through the stories of the midwife’s you get what I believe in many ways to be a very real picture of the struggles that not just mothers, but women, as well as the men that love them go through in everyday life.  The joys, the triumphs, the struggles, the pain, and the victories that if we are all honest accompany everyday life.  I was struck very recently by one of the newest episodes that aired and how very real the subject matter was to my own life and the lives of many I have gained contact with over the last several years.

 

I am connected to several groups, blogs, and organizations whose goal is to provide support, encouragement and advice to parents of children who have either suffered a stroke or similar brain injury that have resulted in a Cerebral Palsy diagnosis or are what is affectionately dubbed a hemi-kid.  That simply refers to a child, who because of said injury has some form of paralysis or loss of function to a single side of the body.  On these forums there are questions regarding treatment experience, how parents have dealt with the financial difficulty of a disabled child, frustrations aired regarding a lack of understanding from family or friends, different resource options, so forth and so on.  I have recently be struck by a comment I have seen repeated by multiple parents on these forums.  A statement that the first time I read it quite literally took my breath away, and I had to go back and reread several times to make sure I had not missed what was said.  I read the words, “This is just a damning diagnosis.” 

 

Now I mentioned before about the latest episode I saw of call the midwife and how much the story on it resonated with me.  There was a family that had a little girl born with extreme deformities to her limbs, so much so the doctors were unsure of her ability to survive based on what they were sure was internal damage to the child as well.  The defects this baby suffered from are based upon a drug that was prescribed to mothers for morning sickness that was discovered to be quite devastating and was largely removed from use by 1961.  The father depicted has an extremely volatile reaction upon first seeing the child, claiming that “it” would not be coming home with them and should never have been allowed to live.  By the end of the episode you see the family come full circle and lovingly, father included, welcome this new baby into their life.

 

Now I recognize that there was a lot to squeeze into an hour episode to bring this story full circle from extreme grief to triumph, however what struck me and I still wrestle with is how many families are never able to really get there.  I am not wrestling with how they got to that thought process or why they are there.  I get that.  We are very fortunate that Brylee has functional use of all her extremities, she can eat, she can speak, and all the way around is truly an amazing little girl.  That doesn’t mean as a mom that I don’t struggle with every botox injection, every times she complains of back pain, how to help my older children learn how to deal with the plethora of questions, knowing most of them are extremely innocent, but it doesn’t change that these are conversations and issues I never expected in a million years to be addressing.  I struggle, there are days I still catch myself thinking about what the future will be like for her.  How will I handle it when the questions aren’t so innocent, when the pain is greater than I can do anything about, when I can not protect her from what she will face in the world?  I go there. I do.  However soon as I go there I stop and I look at her and I don’t see anything damning about her diagnosis or her life.  What I love about her and her diagnosis is that is does not define her.  It is not what will limit her in this world.  Yes she will have limits, but don’t we all.  There is not a person that exists on this planet today that does not have a limit.  I am 5’4” and I can say for an absolute fact I am NEVER going to be able to reach the dishes in the top of my cabinet standing on my own two feet, on the ground, reaching with only my own two hands.  I could let that stop me, however instead I choose to get out and use a step ladder.  Goofy example I know, you can make fun of me for its ridiculousness later.  However my point is that this diagnosis does not define who she or damn her or any other child in the same boat, it is however a part of who she is.  I have seen it drive her to do things that she should not be incapable of doing, I have seen it drive me to grow in ways I have had no idea I was capable of.  The very definition of damning means to bring ruin.  There are many things that come with this particular life that are less than pleasant.  These diagnoses often are accompanied by grief, pain, and confusion.  However ruin and destruction do not have to be a part of it. 

 

I will grieve with every life lost, with every struggle, and every tear shed each time I hear a new story from each and every one of these families.  However I sincerely pray that through the feelings of loss and fear they can see the triumph that can still come even on what seems to be the darkest of days.  I pray for myself that I can hold captive my thoughts on the days where the fear seems to take my breath away remembering that while I can plan for the future I do not need to worry or fear it I am loved by a heavenly Father who is greater than all my worry and fear.  Tomorrow, even for Brylee is simply a date on the calendar that will come and go not matter what I do.  Today however I will choose to cheer for every victory, help her up when she falls, teach and equip her with each new challenge, and I will grieve if and when she needs to grieve.  I will love and cherish every part of her, knowing that without a seemingly, “damning diagnosis” her will to fight and strive and grow would not be the same, and without that, she just wouldn’t be Brylee.