What a tough week. This last week has left me drained. See that little spot on Little J's cheek? That little spot made me realize what a blessing my Little J is, but what a curse his diagnosis of Angelman Syndrome can be.
That little spot brought the fire department and an ambulance to our home. That little spot had us sitting at our local Emergency room for 5 hours. That little spot is only the aftermath. The cause of that little spot is burned in my memory and I see it everytime I close my eyes to go to bed. That little spot had me crying as silently as I could as I drove Little J to therapy the day after it happened.
Tuesday started out just like any other day. Little J went off to school and Princess J and Peanut J and I ran a few errends and played. We picked up Little J at school at his regular time and headed home for our afternoon routine. All the kiddos played and were having a great time. At 4:30, I started getting the kids ready for our evening routine and was getting ready to give the Princess her evening bath. I put Little J in his chair and had cartoons going for him. I got Peanut J in his swing to start his late evening snooze. I was heading down the hallway to start the water for the bath when I hear Little J start crying and Princess J is saying uh-oh over and over again. She didn't sound alarmed, so I was guessing she was tattling on Little J for doing some minor infraction to the Princess rules. Little J had a bungee cord in his hand and had placed the hook end in his mouth. At first I wasn't too alarmed I was going in to retrieve it from him, when I looked twice and realized that he had somehow pushed the hook through his cheek from the inside out.
Now that I've seen this, I can feel the panic rising from the bottom of my stomach, but I convinced myself to take a deep breath and try to relax. Little J is screaming and yanking on the bungee cord and Princess J is just standing there staring saying uh-oh. I didn't want her to get upset, so I just started trying to calm Little J down and keep him still. This was not working so well, as I'm thinking in my head what is the next best thing to do. I kept thinking that I've always heard that if you impale yourself with something that you should leave it in place until a doctor can remove it. While I was trying to keep Little J still, I managed to grab my cell phone out of my pocket and called 911. I just didn't know what else to do with this. Was he going to rip his cheek? How much was it going to bleed if it came out? How on earth was I going to get this out anyway? Keeping Little J from yanking on the bungee cord was not working out so well and finally he somehow popped it out, so while I was on the phone, I grabbed a towel and started applying pressure as I didn't know how much blood might come out. Thankfully, there was not a lot of blood, just a shocked and crying little boy and a freaked out mommy! I got Little J and took him to our front porch, since the fire department and an ambulance was on the way by now.
Thank goodness for our local fire station and the first responders who work there. They were AMAZING! They checked out Little J minimally so as not to freak him out anymore and they already figured that the hospital would be checking the wound. Since it wasn't gushing blood and he was alert, acting normal and breathing, they just stayed with us until G got home and I could transport him myself. We got through it all and Little J was an awesome little trooper. I on the other hand felt like I had just been nominated for worst mother of the decade award......
Here is where my curses and blessings come in. I hope I don't offend anyone by some of the things I'm about to say, but I feel I need to be candid here. Little J is an amazing little boy. He is beautiful, loving, sweet, tenacious, smart, determined and curious. We love him with all of our heart and wouldn't trade his sweet little self for anything on earth. I feel so blessed that he has the abilities that he does. I love that he sees something and never gives up until he figures out just how to accomplish whatever goal he has decided upon. I hate Angelman Syndrome. Not only do I hate the medical issues that AS causes...sleep disturbances, developmental delay, no speech and seizures, but I hate the mental deficiencies it causes. Most little ones learn not to do something either by being told not to do it and remembering that they were told not to do it, or by getting hurt doing something. They don't want to get hurt again and they realize that they should not do the same act again. Little J will not learn this way. I can almost guarantee with 100% accuracy that if Little J saw the same bungee cord again, he would once again pop it into his mouth. If I tell him no, he will stop for approximately 2 seconds and then be back at it again. Some days feel like ground hog day.....over and over and over.
In a nutshell, I am blessed by all the things that Little J can do, and I'm cursed by them all at the same time. I wouldn't trade the abilities he has for anything, but if I could get rid of AS from him, I would make a deal with the devil. I HATE it!
I've had a few people tell me I make it look easy. I thank those of you who have said that for the compliment from the bottom of my heart. I thank G for his constant support and love for our family too. It's not easy though. It's not easy for either of us. We love Little J and do what we have to do. We are abundantly rewarded with his sweet smiles and hugs and his amazing light of love....but it's hard and it's constant. I never ever want to see any of my children hurt, or in any kind of pain, physical or emotional. With Little J it's much different and I just can't find the right words to describe it. Maybe it's that I know he's going to rely on me much longer for so much more than his brother and sister will. Not only do we have to protect him from the world around him, but we have to protect him from himself as well. That's a huge weight on our shoulders and a responsibility that we don't take lightly and when we fail sometimes it breaks our hearts....
