The day Ava had her second Seizure I was taping her for my Youtube channel. We were at children’s hospital getting the intake done for an MRI. During the intake, she threw up and had a seizure.
It was horrible. I ran across this video twice. Both times watching it, I couldn’t watch it in entirely. Also, I can’t stop myself from crying. When there is something wrong with your child it is so hard to handle.
I have so much stress with things I can not control. I know the serenity prayer. It isn’t helping at the moment. Ava hasn’t had a seizure since she was discharged from the hospital. I think we are going on six months no seizure. We have a neurological appointment coming soon. Also, a developmental Pediatrician appointments coming up. Then After the summer I am going to make a dentist appointment.
While also taking myself to the doctor to find an antidepressant that might help me. As the world turns over and over. Life stops for no one.
It is no secret I want my child to start talking. I called the insurance for additional speech therapy. Hopefully, I haven’t written about this before. My mind is in the clouds, and it is hard to keep up.
I found a speech therapist for the weekends. She is doing the evaluation on Ava coming soon. Then my Saturday’s at 11 will be taken up with that appointment. I told her to be honest with me. If she feels Ava case is above her head. I don’t want to waste my time or hers.
I am looking forward to the appointment. She said I will be in a few sessions with Ava. Then I will see through the glass. I really don’t care as long as she makes headway of her talking. Her autism center speech therapist wasn’t insulted by her additional appointment. I brought it up at a meeting. She said great to give her my information, and we can work together.
I thought that was great. I feel my child’s voice is in there.
I know everyone gives me praise for doing the most for my child. I do not feel I am doing enough. It is a deep feeling that I need to be doing a whole lot more. I talked to the head of the Autism nonprofit I am a part of. She said me and my friend K the other autism mom. Jumped in with both feet. She said she has met many who do not take charge the way we do.
I am always kind of shocked about parents that don’t’ go the extra mile for there kids. I should not be appalled at all my parents in no way went the extra mile for me.
Ava was the gift God blessed me with. I asked and pleaded with God to make me a mother. He did it. I have to do all I can do to get my child to the next level. I have to stay faithful I will hear words.
The food therapist showed me a chair that I have purchased.Ava doesn’t want to sit too long. Well with this she will have no choice. We are going to get to work. I am going to make a learning time every day. So I can be a part of her success of getting to the next level. My friend K said we can do it together also. Like a little preschool class. I am down with that. Her younger child is typical, and I suggested he is a part. Then he can help the girls to advance forward.
I feel Ava can be doing more. So I am about to put myself in the line of fire to prove that. I can’t not rest and wait for everyone else to make it happen with my child. Now I will admit I have no idea what the hell I am doing. I am going to have to educate myself and hopefully find resources to do this.
Is it odd that men seem more attractive if they live in a neighborhood with an excellent school system? I don’t want to come off as materialistic. It is like meeting the dude with the nice shiny car. I don’t care about the car. I don’t care if he is a blue collar. I care if his property taxes are paying for good schools.
I know people think I am crazy. Shit, I believe I am insane. I have dated men because they have an adorable smile. I am not going to get into a relationship with an asshole based on where he lives. I will say I would flirt a little extra if he lives in Brookline or Newton.
A 60-year-old guy hit me up a while ago. Now I wasn’t as concerned about his age. He also had to be fuckable. I am sorry if I am being TMI. I can’t deal with a man I have no attraction to. I do find older men attractive, so that isn’t the issue. I can’t be with a man with no appeal on my part.
I would have considered this guy if he wasn’t kid adverse. I totally understand why he isn’t into kids. His kids were in there 30’s, and he had grandkids. I wished him the best, and that was that. So I am still selective. Just say a prayer I can find someone living in Sharon. I am keeping my eyes on the prize.
So I get a letter in the mail. Ava insurance will be kicking her center out of network and she will have to go somewhere else by some random date in February. Can I say I was about to have a nervous breakdown? Of course, I get this letter at 4:45 on a Friday. I am calling the number on the letter like a freak. I finally get someone on the phone thank god.
It was the secondary insurance. I finally could breathe. While I am on the phone Ava transportation drove up. He was trying to take her out of the car with no shoes. They are very nice people, some of the drivers are very young. I yelled him to put her shoes one. All while I am on the phone trying to understand this damn letter.
I called the autism center insurance person. She and I are like rode dogs at this point. She walked hand and hand with me to fight my insurance company to get my baby in the autism center. Her work phone was linked to her cell phone. She said they were in a fight with the secondary insurance. They got a lawyer involved.
Can I say thank you JESUS and God and whatever spirit luck or whatever that help my daughter get in that autism center? I am in constant fear they will try and kick her out. Insurance companies are the enemy. Especially with all the politics around insurance now.
Truth is I want my daughter to talk and be in regular school. I am fighting because she has a true need. I need to find me a man with Blue Cross Blue Shield. I am joking but not really.
A person contacted me to interview me about being a single mother by choice and my Youtube channel. I waited for her to call during our appointment we set up and no call. I am sick of being disappointed. It was known skin off my back really. I was really excited that a major magazine was interested in my story. To be honest it was an email online. I have no idea if this person was real.
I work through a lot of disappointment. When you feel you always get the short end of the stick. Every time I complain, I always feel like shit because I have a very decent life. My child is autistic with seizures, which is a club I would have never joined on my own. I don’t think anyone wants a membership to that club. I saw this on Facebook and I had hope again.
The hope ends when I stop striving. Whatever the outcome I need to continue the fight. The fight for my child and my dreams. Which my child was a dream that came to reality. So her talking and living the greatest life can be another dream come true!!
I had to schedule an MRI for Ava. I pushed it back as far as they would let me. I know this is crazy but I am not looking forward to this test.
They have to put her to sleep. Which scares the shit out of me. I did an MRI in my teenage years. It feels like you are in a coffin. I am praying there isn’t anything wrong with my baby. I hope the seizures will never happen again. Now I am in no rush to put her in her own room. We can share indefinitely. I canceled my appointments because I have so many for Ava. Mine can wait a few months. I know I have to take care of myself. I am taking a lot of time off work for Ava and I need my job. I don’t want them giving me the side eye.
I really like my job. Even though they are about to take our parking and making our park in the neighborhood. Why do I find these job with parking issues I do not know.
I was freaking out about the food I was bringing to the evaluation. I stress over the little things. Finding parking was a nightmare. If anyone knows where Boston Children’s Hospital is located, you know it is a traffic nightmare. The test was three buildings over from the hospital. I went to two different parking lot to finally end up in the correct one.
Ava ended up eating Mac & Cheese and mandarin oranges. The verdict she has no physical issue why she doesn’t eat but four things.
She said her food choices are sensory. She had some dried veggies and Ava brought it to her lips. She didn’t take a bite. She said that was great. Other children wouldn’t even do that.
I also tried to give her pepperoni. She screamed like a mad woman when I put it on her plate. Clearly not going to be one of her favorite foods. We got home in one peace. One appointment down. Many to go!!!
I heard gurgling. I turned on the light and saw my baby. Her eyes were rolled up in her head, she was unresponsive and gurgling. I picked her up and tried to get her to respond. I ran to my mom’s room, screaming something wrong with Ava. She jumped up and started to do what I did, trying to get Ava to respond. She yelled called 911.
First came the police, then fire then EMT. By the time the EMT reached the room Ava had snapped out of it. We took an ambulance to Children’s hospital. My aunt, mother, and cousin showed up to the hospital. I was so glad to not be alone.
They were asking me a lot of questions. My memory was failing me. I was trying to pull it together not doing the best job. The neurologist took a look at her and stated she looked good. I felt like they were going to send us home. Then I felt Ava body go limp and I turned her around and looked at her. It was clearly happening again. Her eyes rolled up in her head and she was unresponsive. They gave her something to stop the seizure and another medication on top.
My baby was asleep for 15 hours. They put electrodes on her head to see her brain waves. They found nothing abnormal. She was not put on seizure medication. They gave us emergency seizure medications. I got one for my house and the other for her school. I feel so beat down by life.
When your kid is not doing well, you are doing worst. Ava is totally back to normal and I am a wreak. #MOMMYLIFE
They started potty training Ava at school. She is killing it. She is doing so well it is crazy. They are going to turn it over to me once they get her to request to go. She did have a bad rash. I talked to the therapist about it. They said it could come from sitting on the toilet so much.
I know they aren’t doing much but potty training. I want to keep her learning, but I want this child potty trained also. I am so tired of changing shitty diapers. The struggle is real. I am thankful that they are going to give me the handoff once she can request. I told them I don’t speak nonverbal. Also, they are watching her all day. One on one therapy. I am usually doing my own thing at home. She is in the living room with all her toys. Her tablet and whatever I can figure out that she likes on the TV. When she wants to cuddle she comes find me and sits on my lap. I make sure she eats and stays hydrated. Other than that I can’t watch Barney and Super Why all day. I would want to kill myself.
So she has officially taken over the living room. She also likes to reorganize things in the refrigerator. We can find the contents placed all over the house.