Mike is on his way once again to Washington DC along with about 170 other advocates for Fragile X. If there is one thing I have learned since our diagnosis its that we are part of one fierce family. People who give of their time, money, energy and love all for their children. Really they do this first for their own children effected by Fragile X and then for all of the other children, parents, grandparents, and so on who are effected is some way. So for those of you who will stand next to Mike on the capital steps, tell your stories in hopes it might change policies, and walk outside your comfort zone for your child and for mine, thank you, I am so proud of you. To all the families at home who hold down the fort while your loved one is fighting for policy change, thank you, you are amazing too. For any body who takes a minute to say a prayer or think about our advocates, thank you, you all mean the world to us. I am so far from a political person its not even funny. I do know one thing policies need to change. How much money it takes to raise a child with any disability is ridiculous. Families should not have to choose between therapy or eating for the week. We should not have to figure out how we are going to pay for the things our children NEED. We should not have to set up special trust funds so that we can secure our children's future.
Thank you to the most amazing husband and daddy a family could ever have. We are blessed to call you ours. We love you more than words can say and we so proud of you. Not only today but every day you are our families rock. You work so hard and make so many sacrifices for us. Thank you for being the man that you are. Thank you for always trying to make us a better family.
Is spread the word to end the word. Why do we still need this day? Why do I keep seeing and hearing the "r" word? Why are we not respectful and mature enough yet to just stop using it? Why is it showing up in literature? Why is it movies and in TV shows? Why do parents allow their children to say it? Why to parents and adults say it? Do you not realize how ignorant you are when you do? How insensitive you sound? It does not make you cool. Just stop! Just stop its not hard, so many people have stopped using the "r" word, you can too.
As adults and parents its our job to teach our children how to respect, accept, and stand up for anyone who may be "different" or disabled. If we don't teach our children who will? If we don't teach our children compassion and love who will? There is nothing more disheartening to me than seeing a child being disrespectful to another child or an adult. It's our job to teach and to model acceptance and respect and most importantly compassion and love. I've heard for years that children imitate what they see. Would you be proud if your child grew up to be just like you? I'm working on this daily. I am trying to set a good example and raise my children in a home that is full of love and compassion for everyone. I fail A LOT, but I am trying.
Those who love their children care enough to discipline them.
1 John 3:18
Dear children, let us not love with words or tongue but with actions and in truth.
Next week is spring break and Mike is out of town for most of it. Lord help me to remember what I just wrote and be still and take a moment to appreciate the blessing you have given me. Please help me keep my sanity and love. Amen