Reflections

2013....When did that happen?  I swear we were just sitting in the NICU with Bella wondering what the future would have in store for us.  Well, now here we are over a year later, and guess what, I am still pondering that same question.  What does the future have in store for us as a family and for our Bella Grace? 

2012 has been a year of joyous moments and minutes of sheer agony.  We have watched our daughter struggle to do the simplest of things.  We have had to make hard surgical decisions regarding Bella, more then once.  We got real acquainted with medical terms like: ETV, septostomy, choroid plexus coagulation, spastic quadripalegic cerebral palsy, cortical vision impairment, RSV, Synagis, developmentally delayed, feeding difficulties. IVH, brain loss, PVL, CLD......the list could go on and on.  We have had to try and start to come to terms with what it means to be a parent to a special needs child. 

BUT, we have watched that little 1 lb 9 oz miracle defy so many odds.  We watched her struggle to get of the ventilator and learn to eat so she could come home from the NICU, and although it was tough, she did it!  We have seen her go through multiple head surgeries and come out smiling, teaching us what true strength looks like.  We have watched her grow, and wean down on needing supplemental o2.  She has made huge improvements with therapy.  She has taught us how to enjoy each little accomplishment.  Bella has a smile that will warm your heart no matter how bad life may seem.  And even though we are struggling to get her to eat and gain weight, she is eating!  Something they said she would never do.  We have watched as one doctor after another looked at Bella in awe.  They are amazed at how well she looks and the things she is doing.  This is huge considering what her medical chart looks like.....not to mention how scary the images of her brain look. 

I'll be very honest, I have bad days.  Days that I wonder how I'll ever get through another minute or one more piece of bad news.  Weight checks that show she has lost more weight.  Head ultrasounds that show enlarged ventricles.  Days that I wonder why she has to struggle with every little thing.  Times that I fall down in a heap of tears and plead with God to heal her.  Nights when I sob about the "unfairness" of it all.  Moments when I beg to take away some of the challenges that she faces.  Days when I can't get past the phrase, "Why her"? 

But through it all, God is right there.  Sometimes He sends those moments of quiet peace.   Often He shows his love through others, who reach out exactly when I need them.  Sometimes, He doesn't say anything, letting me cry, beg, plead, rage and then He reaches out and whispers that it will all work out in His time.  Even when I push Him away, He lets me know that He is never going to really leave me.  I can't even begin to describe the love I have for my Father in Heaven and His son, Jesus Christ.  Because Christ died for us, I know that Bella can be healed.  Maybe not how and when I want, but one day all things will be made right.   While this knowledge doesn't make it easy to deal with fighting to get Bella to eat and gain weight and it doesn't make my anxiety of her upcoming trip to Salt Lake go away, it does give me the courage and strength to take another breathe and continue on. And for now, right here in this minute, that is enough.