Sunday, February 17, 2013

Being real with the ones I love & myself.......

Those that know me well.....know that sharing my things, my time and my love come pretty easy. However,  excepting these things from others does not !  Of course there are many reasons for this.....all have to do with past hurts and wounds.  None that I care to relive or share....that's not the important part.  What's important is that as much as I'm aware of the why & hows and have tried very hard to heal and let the hurts go......old habits are hard to shake....especially in time of stress.....

I spend a great deal of time not dwelling on certain things and subsequently not sharing my worries or is one of the biggest Keisha is loosing her mobility........the neurologist have ruled out many thing.....but have yet to have any possibilities for what the cause may be.  Over the last 6 years she has been declining.  I first notice it in her speech.....then in her balance & processing.  It seems that it goes.......decline - plateau  - decline - plateau.....she has a pediatrician & two pediatric neurologist and still we are know closer to understanding " why" this is happening.  She's been waiting for over 14 months for her to have MRI's & a spinal tap.  Over that last few months she has lost much of the strength in her right arm and hand.  She looses the feeling in her lower back on a regular basis.  Her right arm is almost always bent with her hand in a claw and turned inward.  She is constantly falling & clipping her body on corners and furniture.  The other week I was watching her sing along with the radio in the review mirror and noticed that the right side of her face wasn't moving.  She continues to decline cognitively also and looses her train of thought regularly......they say that it doesn't appear that she's having seizures.....but sometimes it sure looks like she is to me.  We continue to make adaptions to her environment to make life smoother for her and less dangerous.

Last week I just couldn't be tough any more and I had a bit of an emotional freak out and instead of stuffing it back down or hiding away from the world.....I shared.  I'm always on edge every time she goes to have a shower ( something " she can do on her own" & doesn't want/need her mom to help her with).  I'm terrified that the next fall will cause serious injury !!!  It was ridiculously hard for me to wrap my head and heart around " What was I going to do ? ". I had a that was meant to be put into motion years from now........So you see I was STUCK !  Fortunately,  my Kelly knew exactly what I needed to do......make a new plan and get ahead of proactive !  He lovingly nudged me through my emotional hurdles so that I was in the right head space to do just that........get unstuck and to formulate a new plan !  He reminded me that I was not alone in creating a solution that could be put in motion right now.  I may not be able to heal her....but I sure can make our home a safe environment for her to live in and help her maintain the little bit of independence that she still has left !!!!

So first on the list was to demo the two awkward unsafe bathrooms and turn them into one fabulous accessible one with grab bars and that's wheel chair/walker friendly.  With a removable shower head to aid in bathing and soft floors to make the falls less harmful........Once this is done....we'll be updating a larger bedroom and she'll be moving into her very own wheelchair friendly room :)

It's a big project.  One that is going to improve Keisha's day to day life.  In fact it's going to improve all of ours.  I'm so full of gratitude for all the love, support and in this case know how that Kelly and his brothers ( also my friends) Kevin and Jay (who have also jumped on board) are generously giving us.  I wouldn't have been able physically nor financially to do this now if it were not for them.  We are so thankful !!!!!

1 comment:

  1. Shannon, my heart goes out to you and your family. We know the worry of watching a loved one decline and the medical world not be able to find either a diagnosis, prognosis or any way to slow down the condition. In one case we know, the mother of a little girl we help said they'd just realized their daughter's seizures get worse after she's eaten lunch meat. I would never have thought of that because we never eat the stuff, but it made me wonder if there might be a nutritional component to Keisha's condition. I know you guys eat really healthy foods but are there any ones that might be slipping under the radar? If you ever do get an answer, please share it with us. Perhaps it might help our daughter figure out answers to her own issues. I think it is great that you have friends who acknowledge your concerns and help you figure the concrete steps you can take now to make life better. Just doing that makes you feel like you have some measure of control over your life, and that's a good thing. We honor your commitment to your kids. You inspire us.