I stumbled upon this photo while playing on Esty(one of my guilty pleasures). It really speaks to me and depicts my hopes and dreams for Charley - a life without limitations. If you click on the photo it will take you to the photographers Esty store and you can read a little about it. It's amazing to me how one picture can say so much. Beautifully done!!!
If you are not already familiar with this campaign please take a few minutes to click on the link and read about the work they are doing. Maybe you will even want to take the pledge :). This is something that is very important to me!
Charley is out of school for summer break and I am quickly realizing there will be very little time for me to blog. So here I am sitting at the car wash, while Charley is at home with our respite provider, blogging. Charley's last day of school was the 12th of June and I am exhausted. We hosted a last day of school party with our amazing friends to try and kick off the summer right. The next morning I made Charley's breakfast, got her Meds together, woke her up, changed her diaper and fed her. After breakfast we did art projects for Father's day, had a snack, squished some play dough, listened to music, and read 3 books. Then we played "basket" a.k.a. throw all the balls out of a basket and then put them back in. Afterwards we had a popcorn party. I felt like such a fun great Mom until I looked at the clock. It was only 10 am. What am I suppose to do for the next 8 hours? Charley doesn't watch tv or play by herself and she really can't be left alone. I have a 9 year old who doesn't attend to anything for longer than 5 minutes and summer school doesn't start until the end of July. I'm open to any ideas/suggestions. I really want to make summer fun for her like it was for me when I was a kid. She is so precious to me and I want to know that she is enjoying this life she was given.
No matter how much I do for Charley I always find myself feeling guilty. Between the doctors appointments and ALL of the therapies when does Charley just get to be a kid? If we don't do the home therapy program over the weekend am I holding her back? If I let her take a break from her AFO's am I making things worse? Does she eat too much chocolate pudding? ;) There are a million things a day I worry about and 99.9% are related to what's best for Charley. Today her class is going on a field trip to the fair and I have decided not to volunteer.... GUILT! This is the first field trip I haven't gone on. The last day of school is Tuesday and I need to work like mad to accomplish a lot around the house so I can devote my time and attention to Charley and making her summer fun.
Charley never seises to amaze me. She has to work so hard for EVERYTHING she accomplishes. Things that we all take for granted require so much more effort on her part. Charley was in physical therapy for almost 2 years before she learned to rolled and now I am watching her take steps with minimal assistance. To say that I am proud is an understatement! Having a child with special needs makes me appreciate every milestone so much more. Every smile, every step, every new day is a blessing.
This video makes me laugh so hard I could cry. For years now I have called myself a stalker Mom. I am the mom who drops my kid off at school early so I can linger in the classroom. I am at every event, meeting, therapy, and appointment. I see Mom's cars covered in soccer mom, cheer mom, baseball mom etc. decals and I think I need a stalker mom decal with a picture of binoculars. I think most of us special needs moms feel this way. We have to do so much for our children and if we don't "hover" our kids don't get what they need. So here's to all of us stalker moms out there :)!
As this weekend comes to an end I have a lot to reflect on. To say that this weekend was tough would be an understatement. If having an emotional breakdown was an olympic sport I would have taken home the gold! Charley's self injurious behavior (SIB) issues hit an all time high this weekend and to top it off she has recently fallen back into the pattern of trying to physically hurt me. On Saturday we attended a retirement BBQ for one of Charley's favorite teachers. I feel like I did everything right. I told her a social story about the events of the day, packed her favorite foods, and had fun music playing in the van the whole drive there. The second we arrived I regretted leaving the house. Charley was screaming, hitting herself, pulling out my hair, hitting me in the face, and scratching at me. I had an expectation that the day would go smoothly and I was left extremely disappointed. I want to give Charley as many typical life experience as possible but after Saturday I just wanted to go home lock all the doors and shut everyone out. I just kept thinking why is this happening - why does my child have to go through this? I cried the whole way home and then after putting Charley down for a nap I cried myself to sleep. I just felt so lost and alone in the moment. As I look back now I see how I am never alone. I see my amazing friends and family supporting me and I see my loving husband doing whatever he can to help. Tonight I am exhausted but I am hopefully that tomorrow will bring a better day. I love my Charley Girl more than anything and I just want her to be happy.