Charley had a hard time yesterday. I find myself saying that a lot. I warn friends "sure we'd love to see you but I'm not sure how long we will last - Charley's having a tough day"! Everyday is a tough day with little amazing moments sprinkled in. These moments get me through. Yesterdays moment was Charley wanting to hold Wesley before she went to school. When she's at school I get a huge break from the behaviors but it's never really a true break. I'm constantly worried that she is miserable or hurting herself or others. I'm rushing around trying to get all the stuff done that I'm not able to do when Charley's around. There is always some battle to fight with the insurance company or phone calls to make to doctors on Charley's behalf. There is never a dull moment that is for sure. Now I have Wesley to care for too which is more therapeutic and wonderful than it is stressful. That's if you don't count the no sleep element. I'm getting off track now. The point I want to make is that it's heartbreaking watching your child that you love SO much be trapped inside a body that is not working for her. I really try to stay up beat but last night I had a poor Charley poor me breakdown. She was screaming and hitting me all because she was tired and over stimulated. She woke up Wesley from his nap so he started crying. Keith was at a work thing. All I was trying to do was get Charley bathed and dressed for bed. She fought me the entire time. I just kept going with tears streaming down my face. In my head I was thinking - Are you freaking kidding me????? We do this every night!!! It's time to get dressed. WHY DO YOU FIGHT ME ON EVERYTHING??!!!! I just got through the fight, told her I love her, and put her to bed. WHY? I want to scream sometimes but then I remind myself I am not the first person to ever deal with behaviors like this and sadly I won't be the last. So to every parent who has ever cried because all you want if for your child to be happy - you are not alone. For everyone who has wondered why did this happen to my child - you are not alone. There is a community of us who struggle with our child's behavior/health. We have to keep going. We have to keep pushing forward and not shut down. Is it hard? YES! Do other people have it easier? YES - but some have it harder too. I am blessed with a beautiful life. A different life but a good one. I think the worst thing we can do as parents of special needs kids is close ourselves off from the outside world. It's so hard because it would be the easiest choice but it's not the best choice. I feel as if I just rambled on but I guess my point is: last night I was feeling my lowest and this morning I am full of hope. I will not give up! I am not alone! Mommy loves you Charley girl! P.S. if non of this makes sense please remember I'm sleep deprived and I wrote this while nursing a baby. ;)
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August has been a wonderfully busy month! Two weeks ago we were blessed with a visit from my best friend from college and her family. Kara has two beautiful girls Hannah and Macey. The highlight of their visit(for me) was watching the girls interact with Charley! One night we put a movie on in the guest room and Kara and the girls climbed into bed. I brought Charley in to sit with me at the foot of the bed and snuggle. Charley imediatley crawled up to be with Hannah and Macey. Quickly there were pillows flying and girls giggling. It was such a typical little slumber party! Watching Charley have this awesome experience made my heart so full of joy. I defiantly had to fight back tears. Kara's girls truly love Charley and she loves them right back! Thank you Kara and family for spending your hard earned money and precious vacation time to come see us. We LOVE you!
On August 19th Charley had the best Physical Therapy session EVER! She set a Charley distance record and her attitude was fantastic. Normally when she wants to take a break she drops down to the ground, screams, hits or contorts her body in such a way that we are unable to physcially make her stand. On Monday she started taking standing breaks! This opens up a whole new world for Charley. There is now the possibility of actually using the walker out in public one day. Once again Charley has impressed me with her determination. I sure do love my hard working Charley girl!
CLICK ON THE PHOTO FOR VIDEO OF CHARLEY WALKING In late July Charley was able to participate in wheelchair dancing through the Wheelchair Dancers Organization here in San Diego. I was so excited for her to have this wonderful opportunity. Charley and her amazing aide Nettie learned the routine. After some practice they preformed it with other children from Charley's school. I could tell she really liked it because she let Nettie help her with ALL the hand movements. If you know Charley then you know she's not letting you help her do anything she doesn't want to do! It was an emotional experience for me to see Charley getting to do something so typical! I am so proud of my tiny dancer! Check out the link below. Miss Charley & her aide Nettie on dance recital day! http://countynewscenter.com/video?v=152606
Also click on the photo of Charley and Nettie for a link to video of them practicing the dance. On June 24th after a lot of work - I was able to surprise Keith with VIP field passes to the Phillies Padres game. I wrote a letter about Charley and Keith. I told them about what an amazing strong girl Charley is and how lucky she is to have Keith as a stepdad. It was an amazing experience that I'd love to write more about but I'm awful busy these days with the new baby and Charley on summer break. XO First off sorry Miss Amy for my horrible photography skills. So lately physical therapy has been a nightmare. I don't want to sound overly dramatic but when it takes four adults to get a 10 year old to stand its kind of rough. The last 3 sessions were so heartbreaking. I was trying to be firm but patient and loving. I left these sessions exhausted, missing handfuls of hair and bleeding. Charley has become so strong that if she really wants to hurt me it's hard to stop her. She gets stressed and reacts by clawing at me. As I'm sure you can imagine I was dreading PT last Monday. When we got there I could tell she was in a mood and it wasn't going to be productive. After 5 minutes of resistance her therapist said "Charley how about you walk to your van and then you can go home?". Charley said yeeaaaahhhh and then she walk out of the therapy unit down the hall and to her van. I will post a video soon. My girl knows what she wants. Oh Charley Elizabeth. |