New Era...

Certain people have decided that they don't want to be apart of my children's lives. It's not okay but it's their choice. They make no effort to contact the kids. No effort to see them. No effort to show that they give a damn about surgeries and cancer scares.
So we are in a new era. We are surrounding ourselves with people who want to be with the kids. Non-biological aunts and uncles and a grandma and grandpa thrown in (but hopefully we will be in WI soon to see their biological grandparents).
It isn't about stuff - it's about being present. Making time and showing that you care for these tender-hearted, sweet beings. My job is to protect their hearts and I will do it until I can no longer.
So material things are being thrown out. They no longer ask about you. You are no longer there and anything that would make me explain that to them in a way they can understand is going in the trash. I am not doing it to be malicious, but rather, to protect them.
They will be raised without the knowledge that you just don't care. They don't need to know that you don't value them enough to take time for them. They will be raised to know they are loved beyond measure, that autism is not too much for us. That we won't abandon them for poor choices, or for harsh words, or the truth. We will stand by them and love them, and they won't get thrown in a group home because the responsibility is too great.
You are missing out and while you live in a fantasy that your world is perfect and fine, you know deep down that your choices are wrong. It's all your problem. You are missing out. It's your lies and deceit and frankly, my dear, I don't give a damn any more.

New Cloth

Two of my friends have painting businesses.  I love their work and we actually met through my purchases.  I'm adding turquoise to our living room as Gabriel becomes less demanding about the color red. 

 Hooray for a house with less red!  Red is fine but it is not easy to work with when it is everywhere.  Over three years later and I can get different colors.  Oh the joys of autism are never ending. 

I changed the black and white prints to this bright turquoise print.  Now the bench and chair match and that's quite exciting to me.  I was surprised at how dirty the cloth was when I removed it.  Truly disturbing how filthy cloth gets in a matter of years. 

It was more time consuming than I imagined   Removing a zillion staples and then running out of staples, purchasing the wrong ones, etc made it a longer project than anticipated.  Clearly, I'm. It an upholsterer by nature.   

42 years later

Last year was overwhelming and painful, both emotionally and physically.  It was a year of treading water and sinking daily.  When I reached out to some of the wrong people in my small support group, I was let down.  Further adding to my stress and loneliness.  

Now that the kids are in school full time (since January), I've been able to regroup.  I am working out, developing healthy friendships, and reorganizing our lives and home.  It's a process after the turmoil of the last couple years but I'm getting there.  

I turned 42 yesterday.  I was spoiled rotten by my family.  Andrew took us to a beach hotel.  We had fun swimming and splurging on a nice meal. 

I was spoiled with material things.  He really went overboard in his gift gifting.  I

I feel so spoiled!  I usually don't post about my gifts but I was blown away with his generosity.  

I had lunch with Alex's teacher and the class made cards for me.  They are adorable cards. I even received a huge surprise of flowers from my aunt.  I feel loved when I have recently questioned if I am loveable at all. 

We also at ice cream cake for dinner!  Good thing I worked out earlier in the day! 

Chapter Book

One of the third grade teachers allowed me to borrow James and the Giant Peach.  Lane and I spent several nights reading it.  I wasn't entirely sure if, at the age of five, she understood what we were reading.  We trudged on any way. 

Then Alex's third grade teacher loaned the movie to me.  Prior to reading the book, James and his Peach weren't on my radar at all.  I had zero interest in reading it.

It was a great book and a fun movie!  I am so glad we took the time to read the book and followed up with the movie.  

I'm thrilled to report that Lane asked me if we could compare and contrast the movie and the book! She remembered the differences and similarities of the two and that was very exciting.  I'm so glad she has high comprehension skills.  Now that her first chapter book is read, it's time to pick another one.  

Alex and Chiari

Alexander was diagnosed with Chiari in October, just two months after we came home from the hospital with Gabriel. I had a feeling that he had it after our experience with Gabriel. I'm quite sure the neurosurgeon agreed to an MRI on Alex just to appease me or to prove me wrong.
I would have been more than happy to be wrong this time. Since Alex's diagnosis, we have been to nine specialists total for him. We've had a cancer scare and numerous other scares, not all of which have been ruled out yet since it can take months for genetic panels to come back from the lab.
My poor little 48 lb 8 year old cries in pain, complains of dizziness and headaches, and numbness, and gags on food. He has a tough time sleeping and we know that he has central apnea. His leg pain is significant enough to excuse him from P.E. class. His pain breaks my heart daily. The multiple pain medications aren't diminishing his pain enough and I hate that he has to take pain medication at his age. It seems like something is wrong with the universe.
Alex screams a lot now. It's a reminder of Gabriel's pain a year ago without the aggression, for the most part. I've tried hugging him and holding him, hiding my own tears as he tries to make sense of his physical struggle.
We now consult with two neurosurgeons. Chiari is a fiery beast. We have to beg the surgeon to cut our son's skull open in an effort to relieve his symptoms, while not really wanting to face the reality at all. We have half a notebook full of notes about his pain, his sleeping habits, his behavior, and his eating habits.
As with Gabriel, the surgery is not a permanent fix, it's a band-aid. Alex has a pineal cyst that we have to keep an eye on as well as a large right ventricle. He has arachnoid webbing right where the chiari is located and it is believed that this is where his cerebral-spinal fluid is blocked, but the MRI in October wasn't clear on that area.

Alex experienced four MRI's, taking a total of 13 hours including travel time and from the hospital. On two Thursday nights, we made our way to the hospital in order to complete for extensive flow study (CINE) MRIs to see if we can find a tethered cord, syrnx or CSF blockage.
Alex was an incredible patient. He refused sedation because he wanted to experience the entire MRI again. A couple things had to be repeated due to movement, but he made it through it. A few of the hospital employees commented on how I was able to get Alex to stay so still. Nothing, I did absolutely nothing was all I could reply. I wish I had a magic formula but it was really all Alex's doing and had nothing to do with me or my parenting.
If the doctors can find either of these two things, Alex's surgery goes from a 50% success rate to an 80% success rate. I like the 80% odds better. The surgeons due too. They don't want to cut his head open, remove vertebrae, skull, and cerebellum and it is a big failure.
So, here we sit, our summer in limbo, until we have our meetings with the neurosurgeons again to see if the MRIs are more clear, allowing us to make an informed decision.

Onomatopoeia

Alex has a third grade hat parade next week. In order to prepare, he was given a vocabulary word. He had to make a sign, write on an index card, and create a hat that represented his given word.
Alex's vocab word was onomatopoeia. We had so much fun discussing an appropriate way to create an onomatopoeia hat. I grabbed a hat at the dollar tree. (He wasn't thrilled that I didn't get a fancier hat) We found examples of onomatopoeia online and we printed it out on card stock. The words were added to the hat band and on pipe cleaners, sticking out of the hat. Alex added glitter glue for some extra bang! (get it?) 

He was very proud of his creative work and I am too. I enjoy watching his creative side come out during educational projects.

Haircuts

Gabriel copes with his anxiety and haircuts by asking Lane to get her hair trimmed at the same time. This presents a problem when Alex wants to be included but so far we've made it work. Gabriel and Lane go first and then Alex has his turn. Lane still wants long hair so it's a simple hair cut for her.
The stylist asked Lane if she wanted her hair washed this time and she happily tried out the "big girl" hair wash. It was just as exciting to see Lane get her hair washed in a salon as it was to see each of my children get their first hair cuts. 

 
Lane's hair wash prompted the boys to ask for the same so off they went to the sinks too. Gabriel was anxious about water in his ears and eyes and ended up with a shirt drenched in water. Alex was able to stay still though.
It's getting easier to take the kids for simple things like haircuts. I'm glad the days of avoiding salons/barbers for a couple years is past us (for now). I'm glad I don't have to trim their hair unless I want to save money. I haven't lost sight of how challenging it was just a mere year ago to find a place to take the boys for hair cuts and I am grateful we are in this better place.