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Wednesday, October 10, 2012

Life plain and simple

I had every intention today to write a post centered around disability awareness, especially since October is disability awareness month. I wanted to focus on what having a child with a "different" ability brings to our family. Then came the realization my sweet baby girl turned 15 months old today. Also, I did what I promised myself I would not do, but I did it anyway. I logged onto Facebook and saw pictures of family and friends children that are close in age to Julia. It hit me like a ton of bricks my baby girl is not walking independent yet. Wow, another child not hitting a major milestone. Now, the rational side to me says it is okay she is not doing it yet. She is not considered delayed until 18 months. She has got this! The irrational side wanted to sulk in self pity. Why my children? Why?  I know I may not ever understand the why, but it hit me again hard today. I do need to remember the neurologist warned me she might be late walker given the recent set back we experienced with the post viral ataxia. However, it did not soften the blow any less. I felt despite my best effort to focus on the positive it was important to share the reality of what it is like to parent a child with special needs and a child with well I guess "temporary" special needs.

I quickly sent a text to my friend Shawn who gets me and gets it. Whatever the it is. She reminded me again that we can have these days and that my children are going to do amazing things. You know what she is right and she allowed me to vent just for a minute and to realize writing this down is also important. That parenting in general is not all roses and that parenting special situations is definitely not all roses. However, my feelings they are absolutely okay and normal. I try to remain the forever optimist, but sometimes I get knocked down. I bring myself back up despite the blows. For these days that I feel defeated I have found a love of exercise. I have discovered something more than inner strength and that is physical strength. I still have a work in progress however, it is progress. You know what sometimes you have to climb a thousand hills to reach the mountain, but you eventually get there. Thank you Bob for letting me have this time to become stronger physically, for supporting the emotional moments, and my empowering moments.

I want to try to close this post with my original thought I want to focus on the meaning of disability for our family. I also want to emphasize this is not about what my children cannot do, it is about what my children absolutely 100% positively can accomplish. To sum up what they mean in a few words would be hope and inspiration. Those words took on a whole new meaning for me parenting one child with cerebral palsy. Now, with a second child recovering from an illness brings on a whole new meaning. I do not think I could ever imagine just how powerful two words could be. Hayden has shown me that outside of love, hope, inspiration and dedication is all you need. We recently participated in the Easter Seals Annual Dinner. I was so honored to be asked to introduce the key note speaker Congressman Castle this year. It truly was another amazing year. We were there with 200+ guest and those guest sure know my rock star Hayden. Hayden has quite the following and social calendar for a four year old. If Hayden is not your friend already you better believe by the end of the night he will be. Hayden was very eager to show Lt. Governor Matt Denn his volleyball picture, not once, not twice, but at least five times. He wanted to be certain he would be back for volleyball in 2013 ,that he knew he would be there and he was going to watch his daddy play volleyball. He is also quite fond of the stage and wanted to join Congressman Castle in giving his speech. We think he is starting early on his campaign for elective office. Not really sure if he is a democrat or republican just yet. Guess, time will tell. The night ended with heartfelt hugs and good byes. I know he is eager to attend the next event, not sure if it is for the food, the social hour, or being on stage. Probably a combination of all three.

As you can see from the evening at Hotel DuPont  Hayden has brought so much to our lives. Something more than love. Something that is more than being proud of your child. He has brought a purpose. He also prepared me to face a challenge that I did not think I could face, not once but now twice. He reminds me sharing our story opens up so many people's eyes, even just for a moment. He reminds me that having a disability really is not negative, it is a true blessing. He makes people stop and wonder, he helps children understand that different is okay, he enriches lives. He reminds me that I need to think about words differently and how they can offend someone. He reminds me to accept everyone for who they are no matter what. He has taught me to be a better person and I cannot thank him enough for letting me be his mommy.

So, after reading this post I hope just for a moment you see the beauty in all abilities. I hope you understand that I struggle just like everyone else but also have amazing moments. I hope you hold the door open for someone in a wheelchair or give up your close parking spot for the elderly. I hope more than anything you embrace differences, because different is okay.

Much love




  1. Wow Renee..what an amazing post! Your children are beautiful and the are so lucky to have you as a mom. After a somewhat frustrating day this grounded me to what is important. Thank-you. Your feelings are completely normal..and on some level all of us moms have them. Hugs to you hayden & Julia!


  2. Thank you Bonnie, your comments are sweet.