Heart and Soul

February 26, 2015 § 1 Comment

So I have had some time to write finally and I’ve had so much to say that it has overwhelmed me and I still don’t know where to begin. 

Recently, our daughter, Arianna has undergone major surgery.  Due to scoliosis (which is a part of Williams Syndrome for many kids) she had 11 vertebrate fused and rods and screws added to her back.  The few weeks leading up this surgery were torture as she is considered high risk and the surgery was a long one – it lasted 8 hours.  The day of the surgery we waited in a waiting room distracted by some interesting characters clearly sent by the heavens for our entertainment – we were grateful.  These moments of people watching were broken up by taking turns in the hospital chapel to pray, periods of teary outbursts and updates from the O.R.   

8 hours later we got to see our girl and started the journey to healing.  

During our few days in the hospital I was reminded of things I had learned from the time in my life when my daughter was diagnosed – here are some of the gems.

1.  I am constantly surprised by the people who I thought would be there for us and those who actually are.

2.  There are those who get it and those who don’t – the ones who get it are the greatest source of strength during this time.

3. A reminder of how unimportant most of life is and that love and family are all that really matter.

4. That in our families eyes my daughter is not different she is family, our love, our light, our blood, our soul and our heart.  We will advocate and fight and give up every ounce of ourselves for her when we need to. 

5. That in the same way we love our daughter just for being her so do many others – children and adults alike. It also becomes clear who doesn’t really care and that’s ok – at least we know now.  

5. Peers are wonderful – the love and support Ari has recieved from her classmates is heart melting. I am amazed beyond words. Without her friends, visits and FaceTime this long period out of school would have been far more torture.

6.  Gratitude, faith and prayer sustain us when things are difficult.

That’s just some of the lessons I am reminded of and possibly I will share more but right now my girl is waking from sleep and well, that’s what is most important.

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