Here I go again....Concluding thoughts from this weekends RettSyndrome.org conference: -Siblings of children with disabilities should run the world: nowhere else will you find such self-sacrifice, genuine love for another, patience, and insight than in their little bodies. They will grow to be the wisest and most compassionate humans, and to them should we all turn to as role models. Rett effects everyone in the family, but the ones who get the most from it, are the siblings. -Ive witnessed firsthand the power of connectivity. People coming together united by a common purpose, strengthening and uplifting each other, supporting and praying for one another, and ultimately serving one another in ways that only they can do. We were not created for ourselves, we shouldnt worry about ourselves. All we are to do is serve our brothers and sisters and God will provide for all our needs. Never stop giving. -Maintenance is progress. If our girls are maintaing skills, then that, my friends, is a good thing. Just because they are not reaching the next goal, doesnt mean that they arent working hard at simply maintaing what theyve got. Rejoice in what they can do!! -Celebrate your child as a person. Celebrate researchers who work tirelessly for unknown reasons. Celebrate life--everything we do is worth it! -Our children have value because they change people. Dont ever let anyone tell you what your child will or will not do. They are capable of so much more than most give them credit for, namely touching hearts. -This whole journey of RettSyndrome involves A LOT of grieving. Grieving that comes and grieving that goes. Never let that grieving stop you in your tracks. Allow it to happen, allow it to make you grow and appreciate that you are ever-changing into something greater than you would have otherwise been had you not taken the time to stop and grieve. -Service Learning has a whole new meaning to me now. I thought it was about going to a far away country and building a house, loving an orphan, or feeding the poor.....but essentially, our home is an opportunity for service learning everyday. The experiences our children are having with their disabled sister are the things they will remember forever. They are the things that will shape them. The things they do now, may seem trivial or insignificant to some, but to their sister, it is MONUMENTAL--and thats all that matters! -The power of positive thinking is incredible.....I had a weird feeling Id win that activity chair, valued at over $4,500, so I decided to buy tickets. That feeling never left me. Right before the event, I called Brian to say, Do these numbers sound lucky? I think one of them is! He laughed,and lo and behold....we won it! -FB connects people in outstanding ways....although we truly dont know every friend we have, finally being able to meet some of them in person, makes you feel closer than you would have otherwise been. It was awesome meeting so many beautiful people dedicated to our important cause. -I certainly miss my kids when Im away, but Im finally realizing the power of just a few days away to help me reboot and refocus. Ill finally admit it, I cant do it all and I certainly need a break every now and then :) Thank you Brian Bateh and Victoria Shunnarah and Sophie Shunnarah for taking care of my family while I was away. I couldnt do it without all of you!
Posted on: Tue, 01 Jul 2014 02:46:01 +0000
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