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Tuesday, October 23, 2012

Today's post brought to you by: Inchstones

My emotions have been up and down lately. There are days I am encouraged by the improvement Julia is making and the strength Hayden is gaining, but then there are days that I struggle to see the positive. Julia has been seeing Hayden's old therapist from Easter Seals. I am so lucky to have them back in my life, not that they were really out of it, but the weekly support helps. It helps that they know my family, they know me, and they understand that I have these moments of weakness.  They help me see the beauty in little inch stones and embrace those joys. 

I have not been sleeping well over the last few days. I cannot seem to turn my mind off of the pending microarray testing that was completed on Julia on September 27th.  The thing about these tests is that I endure weeks of waiting. This test in particular takes three-five weeks to run the DNA analysis looking for deletions or duplication's. I do not know why I cannot turn off my mind. I do not anticipate anything coming back  for Julia since Hayden did not have anything show up on his analysis a few years ago. Still I worry and I wait. However, even if something does show up I know that does not change who Julia is and what she will accomplish. I think what I struggle with is the irony in this all. The fact that I had a beautiful normal developing little girl get a normal childhood illness. The fact that it took away some of my worry she was developing normally and allowed me to experience a typical childhood progression. The fact that it was taken away from me in an instant. I try not to be angry or allow for self pity of why me, but sometimes I just give into that nagging little part of my brain. That nagging little part that is saying it is just not fair. 

Despite my ups and down this week we had something amazing happen today. It was a day that I needed something amazing to happen. Julia walked pushing a toy. While this may not sound huge it is so big! She did this on her own for five feet, without falling, without help. My heart was full, my eyes filled with tears as my baby girl was taking assisted steps. I also witnessed my son Hayden cheer his baby sister on because he knew that was a huge deal today. I found him an hour later helping his baby sister, showing her exactly how to pull to stand. He kept telling Julia to put her feet closer together. He corrected her kneeling telling her to tall knee. This kid is amazing! He sees joy where I miss it some times. He truly is a wonderful big brother and the best big brother for Julia. I have written before how Julia has helped Hayden well today Hayden has helped Julia. He helped her get into positions correctly and he celebrated our big deal of walking with a toy. 

Wow, how my days can go from worry to joy. I love the days with joy and I know the days with worry will become less. I know once I have digested our new normal it will get easier. But most of all I know my children will have many more amazing days ahead. 

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