Summer Camp

My kids have never gone to summer camp before.  We've done tons of summer activities and they've taken lessons.  We typically have scheduled days to help me keep everything organized.  

This summer required summer camp for Alex.  I found some camps that still had openings and thankfully a good friend had her kids there too.  She (and her husband) were generous enough to drive Alex every day for two weeks.  We are so grateful for their help. 

Alex went to ice skating camp the first week. He enjoyed it. The first day, I gave him money for the entire week.  He spent it all and apparently another child said, " I won't be your friend unless you share your money."   Needless to say, we practiced how to handle such a situation.  

The second week was dance camp with a Frozen theme.  Alex really likes dance and the movie.  He wasn't thrilled that the dance teacher didn't teach him the "guy" moves instead of just the girl portion. He's been pretty spoiled with the only boy spot with his dance teachers at our studio. 

We have two more weeks of camp planned. He will go back to ice skating camp and then he will attend gymnastics camp with Lane.  

It's been nice to hear about his adventures at camp.  I'm really glad he's busy and learning new skills while being social. 

Meningitis

Day 9 post op and Gabriel has been admitted to the ICU with meningitis.  As if brain surgery doesn't illicit enough fear in a parent, now I have to hear that my child has meningitis. 

The neurosurgeon did a spinal tap to determine which type of meningitis he is battling. I was surprised that the spinal tap is performed in his hospital room.  Andrew stayed in the room and ended up assisting in case Gabriel woke up.  

If he has bacterial meningitis, he will be in the hospital for 14-21 days depending on which bacteria it is.  It takes 48-72 hours to run all of the tests so the earliest we can leave is Sunday evening at 7 pm. (It's Friday evening)

All of the beeps and running oxygen and suction swooshing are making me anxious this time.  Actually I'm scared  I'm terrified about what lies ahead of us This is our third stay in the PICU in a matter of months.  The bright lights flash across the screens with numbers and when they go too low, people run into the room and monitors beep furiously. 

This time we have an added bonus: the staff comes in the room in a yellow mask and a yellow protective covering over their clothing. It feels like I'm on a TV set, not a child's hospital room. The extra protection is freaking me out, I can only imagine what my 9 year old is thinking when he sees these people approach him. 

Gabriel's Surgery

When Gabriel does things, he chooses to do them big.  This includes surgery.  Rather than tubes in his ears or adenoids removed, he has major brain surgery. 

The morning of July 15, Andrew carried Gabriel to the car at 5:15 am.  We have taken him to things in during the early morning hours and he simply slept in the car.  Instead, Gabriel told us that he was angry about being in the car at night time.  It was time to quit going so "forward-er" and go home.  It didn't take long before he told us that he didn't want to go the doctor's office. 

Given the situation, it took all my strength not to turn the car around and cancel his surgery time.  The few days before his surgery date, I stared at his beautiful head that didn't have a single mark on it. He would soon have a large incision in the middle of the back of his head.  

We continued to the hospital and upon arrival, I dropped Andrew and Gabriel off at the front doors while I parked the car.  Gabriel threw himself on the ground and yelled at us for bringing him to the hospital at night.  We managed to get to the second floor.  While I registered him, Andrew continued to de-escalate Gabriel.  Gabriel pulled hair, scratched Andrews face, and yelled.  I'm glad there was only one other family in the surgical area with us. 

The nurse called Gabriel to the pre-op room.  He was still angry that it was night time. The sweet staff attempted to calm him down and talked to us about everything.  When it came time to go back to surgery, the staff attempted every trick they knew to get him there 

They decided to skip protocol, dressed both of us for surgery, and Andrew and I escorted him down the hall.  When the operating room doors home, reality smacked me hard.  There were twelve nurses and doctors waiting to perform brain surgery on my baby.  

I held the tears in, somehow, as Gabriel jumped into the wagon. The anesthesiologist grabbed the mask as the three of us rubbed his arms and he calmly went to sleep.  The nurses move him to the bed and we kissed him good bye.  My lovely son awaited his surgery. 

The nurses escorted us out to te waiting room and told us that we did an excellent job with Gabriel.  The also said that most kids that anxious don't calm down like he did.  In a way that made me feel better 

Uncomfortably Numb

In two days we will be sitting in a hospital while our son has major surgery.  The benefits outweigh the risks and in my heart I know Gabriel will come out of this feeling better. I still struggle with the emotions and stress surrounding the situation. 

I've dealt with depression since I was a teenager  I am open about it but I don't tell everyone because depression still has a stigma.  Ive heard other people make comments about themselves or other people. They say things like, "if they would just get off their tush and do something, they will be fine."  "If they look at their blessings, they will see that their world isn't so bad."   These statements, while well intentioned, only isolate the person with depression more.  

I am numb.  With this numbness, I've been worried that I would have crippling depression and we do not have time for depression to hit with a furry right now.  Numb didn't seem to be the correct word.  I still feel things.  I just can't move or stop staring at my handsome little man cub.  Numb wasn't the right word at all 

Another Chiarian mom used the word paralyzed.  Yes, paralyzed is more appropriate.  I am paralyzed with fear.  I am scared out of my mind about the  uncertainty that lies in the days ahead.  I lack control the minute I give Gabriel a last hug and kiss on Tuesday morning.  

I also have a problem asking for help.  I'm a caregiver at heart. I want to help when I'm able to do so.  It's just who I am. Asking for help is a humbling experience for me and one that fills me with gratitude. It isn't easy because I don't want to inconvenience or take advantage of anyone.  I know I will never be able to repay everyone.  Honestly, I hope I will never see my friends in a situation where I will need to step in to help in the same way. 

We have had numerous offers for help for the next three weeks.   We have child care, meals, cleaning, grocery shopping, dog walks, child rides, hospital visits and more covered by our friends and community.  I have friends sending things from out of state.  I have offers for skype and even an offer to fly here. 

I didn't realize how loved we are here In Florida and across the states, until we had such a challenging event present itself.  Thank you for the prayers and the help.  We will never be able to express our gratitude enough.  

Major Surgery In One Week

Next week at this time, we will be preparing for major surgery. Gabriel has been scheduled for decompression surgery on July 15th at 7:30 am. We have to arrive an hour early.
I'm teetering between being numb and bursting into tears today. Neither one will help this situation or make it go away but I am an emotional wreck. The neurosurgeon said, "this is major surgery but it isn't as invasive as removing a tumor." It was meant to put everything in perspective for us but it makes the fact hit home that a stranger will be in my son's head, manipulating his brain.
The surgeon will remove the top vertebrae, part of his skull, and the cerebellum tonsils that are hanging into his neck. There is also a cyst that needs to be drained. The surgeon doesn't know if the cyst was mislabeled and he actually has hydrocephalus. So there's that - hydrocephalus - a buildup of fluid inside the skull that leads to brain swelling.
The recovery could take 2-5 days in the hospital. The surgeon said that children who aren't as complicated, medically and behaviorally as Gabriel, are usually there for two days. It will take a couple weeks until he feels like himself and then he will be completely recovered in six weeks, given no complications.
Please do not give me credit for handling this well or for having more strength than you can imagine. You would do the same thing I am doing and your heart would be breaking apart to bits as you watch your son today, knowing what he is facing in just over a week. You would take on the surgery yourself if it meant he didn't need to do it. You would need support and strength from people near and far. You would feel desperate and weak. You wouldn't be able explain the absolute fear that rocks you to your core when you consider brain surgery for your child.
Yet you would have hope that his quality of life would improve in six weeks. You are an adult and you have to slap a smile on in order to maintain some type of order in your household. You would feel grateful that there is something to relieve his symptoms, even if it isn't a cure. You would fail in your attempt to thank anyone who steps forward to help.
Put yourself in my shoes and think about how difficult it will be to hand my child, my firstborn "baby", over to a stranger next Tuesday so they can remove bone from his head. It could be you. I never thought this would be me. I'm sure most people aren't prepared for these things.

Are You Gabriel's Mother?

According to Autism Speaks, (http://www.autismspeaks.org/family-services/autism-safety-project/abuse) children with disabilities are twice as likely as neurotypical children to be abused physically or sexually. I read numerous reports about these children. Today, I read about parents in Anahheim, accused of keeping their 11 year old son with autism in a dog crate. (www.google.com/url?sa=t&rct=j&q=&esrc=s&source=newssearch&cd=1&ved=0CB4QqQIoADAA&url=http%3A%2F%2Fktla.com%2F2014%2F07%2F02%2Fparents-arrested-after-11-year-old-autistic-boy-found-living-in-cage-anaheim-police%2F&ei=vrO1U7LIJKqlsQSi4IDwCw&usg=AFQjCNEWo9KVewqPyjPMnsR317tg-Oy7Bw&sig2=EKI4pvmREpsJWpZN8A-KWw)
Gabriel is only a year and a half younger than this child. I am sick to my stomach. How could someone even consider a dog crate as an acceptable means of controlling a child? How can that thought even cross an adult's mind? It is my deepest hope that the child can recovery from such deplorable actions.
A couple weeks before the school year was complete, two officers knocked on my door in the morning. My house was messy and I was tired. I had to answer my door without a bra on and for some reason, this is an awful situation for me.
My mind raced. Did Alex and Andrew make it to school and work okay? Did something awful happen? Are we being arrested for something I was completely unaware of? My heart was beating out of my chest and I even thought about hiding in my bedroom. However, I knew that hiding wouldn't make these officers or the situation go away.
I opened the door. My hand was shaking. I glanced around the entryway and noted an old crib mattress to the side of the door. The day before, I brought it down to throw away and Gabriel had stripped the cloth off it to turn the coils into a fun play thing to jump on. It made everything look trashy. (great)
The conversation went something like this: "do you know Gabriel?" "yes, I'm his mother, why? " "We need to discuss something with you." Gabriel and Lane run to the door, smiling and laughing. They wave sweetly to the officers and say, "hi!"
They had to discuss a report that was filed at the school by an adult. Gabriel made sexual gestures and remarks that were not appropriate for a child his age. If you know Gabriel, he doesn't have a clue about sexual terms or sexuality. He's a very naive boy and I'm fine with that at age 9.
I think I argued with with officers and told them that was disgusting and how dare someone accuse my child of something like that. Trust me, my children are not angels but I also know what my children are capable of doing and sexual activities aren't one of them. The officers explained that they would file the report, investigators would be at my home, and they would follow up to find out who was sexually abusing my child.
There it is... the tip of my emotional ice berg that is shattering. My husband and I spent hours figuring out our rights should we be accused of something horrible. I was sick to my stomach and could barely function thinking about someone hurting my child. The school is the safe zone for children. Did someone think Andrew or I hurt Gabriel? This is his other safe zone. I called the doctor and asked what we should do for him. I confided in a few friends. I cried. (a lot)
Later in the afternoon, the doorbell rang again. "What now?!" I thought. A DCF investigator stood at my door. She spent over three hours interviewing me, looking around at my home, and playing with my children. It was awkward, at best.
It wasn't until she had been here for two hours that she told me that my husband and I were not suspects. No one thought we did anything inappropriate. I could breathe a little bit after those two hours with her.
Sadly, I haven't really considered sexual abuse against my sons. I think about what could happen to our daughter. Statistics show that boys also experience some form of sexual abuse. I would guess I'm not the only person with this misconception.

(from the National Child Traumatic Stress Network)

An investigator with the sheriff's office also interviewed all of us, including Gabriel, a week later. I asked for the extensive notes and behavior reports from the school. I had copies but never saw anything of concern in the paperwork. Nothing existed that indicated any sexual behavior happened at the school.
I am glad that I didn't know who reported the incident at the school, though I have my suspicions. I am also glad that I didn't know who was alleged accused either. I do not know how I would have reacted toward that person.
We finally heard that our case was closed with both the sheriff's office and DCF. They found no wrong doing and didn't charge anyone.
Most likely, we will never know what happened. Was he abused? Was it all a misinterpreted conversation by an untrained staff member? Was he set up to say and do awful things? Was it a lie for retaliation against us, his parents? My gut instinct is that nothing happened. I can't decide if he was set up for retaliation or not. It is disturbing that I am happy if we were set up to leave the school because at least then my child wasn't abused sexually. Either way, it will take a while to gather my shattered pieces of trust. (which wasn't very strong before this incident)

Chiari, You Suck

Since receiving Gabriel's chiari diagnosis, we have been on a roller coaster. This is a new "normal" we are still adjusting to and I don't know if it will ever feel like a normal day again. We were told to prepare for a surgery discussion over two months ago when we scheduled the first neurosurgery appointment. We spent several days researching and preparing to make the best decision for Gabriel.
When we went to the appointment, we were prepared emotionally for a discussion about the surgeon cutting his skull open and removing a section of his skull as well as a portion of his cerebellum. As possible as that is for parents any way. We went with the three children since we don't have a reliable babysitter right now and talked to a pediatric neurosurgeon. I, mean, seriously, these kinds of specialists shouldn't even exist. Neurosurgery and child should not be a statement anyone makes, ever.
The surgeon believed Gabriel had tethered cord syndrome and needed an MRI to determine if a tethered spinal cord was pulling his cerebellum down. He said that was a surgery that was much easier in terms of recovery and would alleviate the chiari symptoms. He has also seen autistic symptoms get better for some reason after TCS surgery. The surgery involves cutting the frayed spinal cord.
I scheduled the second MRI for a month later. I had to drive Gabriel for an early morning MRI. It was the longest 40 minutes I've spent in the car with him. He ripped my hair out of my head. He bit me. He hit me. He tried to fling himself out of the front passenger door into traffic. I don't know how we made it to the hospital but by the grace of G-d, we safely arrived.
After he hit an adult working at the hospital, I had to walk holding his hands while he screamed and cried about going to the hospital. Gabriel is 9 years old, almost 4'5" tall and 62 lbs. He is strong and smart. However, he can't communicate about what is upsetting him or how I can help him.
We made it to the elevators. I waited for the first elevator and I kid you not, another mom with her son, jumped on the elevator. She smiled at me and said, "come on, there's room." I just stared. I had tears rolling down my face because I was already emotionally exhausted and physically tired. Here was this oblivious woman asking me to join her on the elevator. Is she NUTS!!?! She repeated her statement and I had to explain that we would wait longer for the next elevator because I didn't want my son to hurt anyone.
Eventually we made our way to the MRI. I was able to get two people to help Gabriel and keep him occupied. A child life specialist we worked with brought more activities and a projector that created stars in our waiting room. The procedure went well. He woke slowly from anesthesia and we were on our way.
Andrew and Lane joined us at the hospital. Gabriel had an enormous meltdown on the way home. Andrew pulled the car over and we had to leave it in a parking lot in order for one of us to drive and the other to hold Gabriel safely. He didn't know how I managed to get to the hospital earlier that day. I am not entirely sure either. I can not effectively explain how awful his behavior was on the way home.
The results came back later that day. Gabriel does not have tethered cord syndrome. We have to keep a three month journal of his symptoms and return to discuss everything the end of July. We aren't meeting with same surgeon, but someone who works with him. Our neurosurgeon is in charge of the entire department.
A couple days ago we met with our wonderful neurologist. She informed us that our NS would like to move our appointment up almost four weeks and discuss surgery and pre-op. He wants to discuss performing surgery as early as two weeks so Gabriel has the opportunity to recover before school begins in August.
I can not stop thinking about our upcoming appointment and probable surgery. I feel helpless when considering handing my precious son over to a stranger. I can not believe that surgery won't cure his pain, only possibly help. I have to find a way to believe that this stranger can remove a portion of his skull and his brain and safely give my son back to me. That is a lot of faith and hope. As I contemplate these feelings and procedures, I eat ice cream. Lots of ice cream. Salad just doesn't cut it today as I think about brain surgery.

Here are several post-op photos from decompression surgery. These chiari warriors gave me permission to post their photos and I am grateful for their generosity.