K and 3

Lane and Alex have been in school for one week.  

They both love school this year and it is exciting to have a kindergardener and two third graders 

Gabriel hasn't gone to school yet since he returned from the hospital on Tuesday.  He says that he wants to go back and wants to meet his new teachers and friends. 

They will all take the bus this year.  Even though it's more challenging to get them up earlier, it's much easier to walk them to the bus in the morning.  There are no arguments about getting in the car, they just walk up the bus steps and wave good bye. 

Wow. You're an asshole

You're an asshole when.... Your 9 year old nephew is fighting for his life in the ICU and you're busy taking selfies at the dentist.  You don't bother to mention his battle. You don't care - why? Because you're an asshole. Yes Erin, that's you.  The selfish bitch that we all know you are and I'm calling you out on it in my blog.  Few people are fooled by you.  If you change and give two shits about your biological family, I will eat my words. But really, if someone is unable to do something for you, you don't reach out to them. 

I'm the one who drove with my three young children when you were very ill.  I cleaned your house full of dog feces and maggots.  I loved planning a shower and bachelorette party for you.  I didn't love when you called me selfish and kicked me out of your wedding as I sat in an ER alone, right before having surgery. 

I did that because you are my sister.  You always will be.  I will also call you out when you're a selfish asshole.  

Gabriel will continue to battle.  And unless you step up to the plate, these three gorgeous children of mine will never know who you are.  Because someone who lies about me having gonnerhea and whatever filth you said, doesn't deserve them.  

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.