Friday, December 26, 2014

Miscellaneous Ramblings

I hope that everyone had a wonderful Christmas.  Ours was low key this year but I always enjoy the time with family.  I also like presents too but I can live without them :)   The one thing that I want more than anything else is a cure for Pulmonary Hypertension and so far that hasn't come but I believe it will.

Every morning I watch Joyce Meyer and this morning was no exception.  It was a re-run I believe but I always learn something new or if I am struggling with some area a show pertaining to that will air. It's a little freaky sometimes.

This morning's show was about Trusting God When You Don't Understand.  This is something I always have to remind myself.    There was a segment with a couple who had lost their young son (under 5 years old) to a rare genetic disorder which at this time is incurable.  The mother stated when she found out that she was pregnant with him she prayed that he would not only be a blessing to them but to others as well.

I can so see the blessing that Nicole has had in our life.... I have learned so much from her and she is truly my hero.  I also know that she is a blessing to others as well either through her illness and the PH community as well as the way she lives and copes with it.  She is also a blessing through the beauty of her artwork.

As I watched this segment (which I have seen before) with tears rolling down my face I thought about Nicole and how I don't understand why not so much that God allowed her  to be born with congenital heart defects but more so why were her health issues misdiagnosed for 15 years.  I am in awe everyday of the things that could have happened and I am most grateful for God keeping her safe.

Unless you are a parent of a chronically ill child, and it doesn't matter if the child is 2 or 20 they still are your child, it is harder to grasp the struggles that a parent goes through everyday.  It is absolutely heart-wrenching to watch your child suffer. The hopelessness and helplessness can be overwhelming at times.  There is one particular person that was such an influence after I heard her speak about her struggles with her son less than a month prior to Nicole's diagnosis and I just couldn't wrap my brain around the strength and courage that she has everyday. She was and continues to be an inspiration to me.

I truly believe to the depths of my soul that if it wasn't for Nicole's illness she wouldn't be the artist that she is today.  Her artwork is incredible and I am so proud of how she continues to grow and do things that she never would have thought she could do.  The first time she drew a face, the first time she drew a figure etc.   I see the passion in her eyes when she completes  a piece that is she proud of.

My heart goes out to those parents that have lost children and I never, ever want to experience this and I hope that God will spare me this pain but I know if I had to choose to either live my life without Nicole or have her live her life without me I would rather live without her.

As we end 2014 and move into 2015 I would love to see a cure for PH but short of this I would love to see Nicole to continue to grow in her passion of art.  I would also pray that she remains stable and that the medication that she takes even with all of it side effects and chronic pain will continue to do this for her. I pray for continued good health for myself and the rest of my family.  It is very frustrating and stressful dealing with a chronic illness whether it is for yourself or for a child but I pray that I will continue to provide that support and love for Nicole for as long as she requires me to do so.  I would do anything for her and if this is what I need to do I will.

I would love to see others be more compassionate in regards to someone who is disabled either through a chronic illness or through injury especially when their disability may not be "visible" to the naked eye.  I would love to see others think about how they would want someone to hold a door open because they are pushing a person in a wheelchair or are struggling carrying a child etc.  I struggle everyday with being judgmental because something looks different than what it is .... I can tell you that God has really opened my eyes to this  A LOT since 2010 and continues to do so.   As Joyce Meyers says "I'm not where I need to be but thank God I'm not where I use to be."

I wish everyone a happy, healthy, safe and prosperous 2015!!!!!!!!!!!!

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