I am a wife, daughter, mother, aunt, sister and friend. Also, an x-ray technologist, Realtor and photographer. I also make jewelry. One more thing, I like to bitch and believe I have a lot to bitch about.
I have a secret.
It’s another blog.
It’s private for now, until my daughter gives permission to publish it. You see, she came into our bedroom and made an announcement that actually turned my body numb. It was such a shock that you could have knocked me over with a feather. I thought I’d heard it all, until this.
I’ve told a few friends and my family but I shouldn’t have even done that. Kids are big on privacy these days, understandable with the social media age we’re in and that they’ve grown up with.
It’s been stressful for myself and my husband. Regardless, she knows that we love her and will stand beside her no matter what. Life can be confusing and she still has a lot of growing up to do.
We had a great time at the 6th annual Annapolis St. Patrick’s parade. It’s not the biggest parade I’ve ever seen and it’s not the smallest (my favorite, the Galesville,MD 4th of July parade). I guess it’s a medium parade, which is great. We got lucky and found parking for $10 at a lot only only half a block from Market House, where we met my friend Marc.
Here are some floats:
Here’s some people:
Here’s some bagpipers:
Here are lots of dogs, Annapolis is a big dog town. Businesses downtown put out bowls of water for them.
It’s hard to know, with a non-verbal child. Sometimes I think I see a flicker of surprise or acknowledgement in his eye (he only uses one), but just sometimes. Being with him full time is a strange existence, it’s almost like I’m alone. I don’t know if he knows I’m his Mom. I don’t know what he’s thinking or even at what level he understands. I like to think he’s at the level of a 9 month old. Why? Because living like this would drive a normal intellect insane. I still change his diapers, for goodness sake. I hand feed him. He drinks a bottle. He’s 17. He has many seizures. He’s so big now, it’s turned very physical and I have fibromyalgia And I’m in my 50’s, an old lady by young people standards.
His biological father is a drug addict and in prison at the moment, my husband has been his father. But as Chance gets older and needs to be shaved and has acne and grows more distant, my husband grows further away. Chance even has a moustache! He looks so much like his bio dad, who my husband saw once in court. It’s strange for everyone.
He usually seems pretty happy. He smiles every once in a while, but he’s a teenager and not always a happy camper. He hardly, if ever, crys anymore. During his first year, that’s all he did, so maybe he wore it all out. So he’s changed, because as a boy, he smiled all the time. I called him handsome Chansome.
He goes to school, which he seems to like, also he likes riding the school bus. This is all speculation on my part. He seems the same. I worry, am I assigning him my own personality and voice as we do with pets? He’s a human being. A doctor said that to my Mom once, because she thought he was too much for me and isn’t close to him. She likes the girls best.
He rides a horse every week, a therapy called hippotherapy. He sits on the horse with a person on either side and a person leading the horse and an occupational therapist behind or working with him. He seems to like it or I like it for him, I don’t know. Believe it or not, insurance doesn’t pay for this, so I have to ask a charity for money, which lasts a few months. There is a LOT of paperwork involved with having a handicapped child. Doctors forms, social security, documents for court and child support, money to do a therapy that isn’t “approved” by the insurance industry. It’s a travesty. It’s called HippoTHERAPY and he works with an occupational therapist, who would be payed if we were inside!
But then I think about the terrible and wonderful day that he was thrown from a horse! Yes, terrible: I usually follow them around, but they were out in a field, I wasn’t allowed there. In the office, the walkie talkie crackled and said “rider down, rider down in the field” and people started running. I knew it was Chance, he was the only one out there. I ran, it seemed so far. And he was just laying there. I ran toward his head to stabilize his neck. I looked at him, upside down, he opened his eyes and looked into my eyes and started crying! He waited for me, to cry! I am special to him! We got an ambulance and he was checked out at the hospital and he was fine! A miracle. He has osteoporotic bones and has already had a fractured hip that required surgery and a full body cast for eight weeks. It was a nightmare, especially for Chance. He was thrown from a huge horse and had no injuries. Did he float down? No. Did someone catch him? No. The wonderful.
I have a son named Chance. He is 17 years old, going into his senior year of high school. He’s handsome, funny, quirky, brave, strong, sometimes grumpy. Hey, nobody’s perfect! LOL!
I love him. He’s still like a 9 month old baby intellectually and physically. He wears diapers, doesn’t talk or walk unassisted and has daily seizures. It’s God-awful. It’s ruined my life. I was just barely making it, widowed, with one teenage child and then I was pregnant. And then the father ran away. And I have fibromyalgia. And I work full time. And I have a house and bills to take care of. And the baby’s not well. There’s something wrong and the doctors won’t believe me. Tip.
He was eventually, after many time consuming and physically punishing doctors appointments, diagnosed with cerebral palsy and epilepsy. At one point they said he was virtually blind. Tip. As he got older, he wasn’t gaining weight. He wouldn’t breastfeed and then never learned how to chew, or talk, walk, potty train… He looked like a skeleton. We’re fortunate to live near a big city with lots of the best medical care in the country. Baltimore, Kennedy Krieger Institute, Johns Hopkins Hospital. We started going to a feeding clinic at KK and they suggested a feeding tube, although they have a cutesy name for it, button. It’s a surgical procedure where his intestine is hooked up to the outside. There are many complications possible. It would make things easier for me and them, but that doesn’t mean it’s best for Chance.
They gave him a goal weight and I stuffed him full of food and formula so we could avoid “the button”. And we did hit! He hit the goal weight, so for now he’s safe. When I’m not around anymore (something I worry about constantly), he will probably end up with one, but His beautiful bod is still whole.
Alarm bells are going off. It’s a bell only primary care providers (usually Moms) can hear. And that bell is screaming HALLOWEEN! Believe it or not, some people are already thinking about Christmas, may God bless them one and all!!! Ha!
Anywho, we have to start thinking about costumes. First I’ll ask the kids what they want to be and then I’ll decide what they are going to be. Should we do totally random or matchy-matchy? I have a boy and girl so we’ve done fireman and dog, Raggedy Ann and Andy (so cute) and others random, depending on my energy level that year.