I’ve been doing a lot of thinking, researching, meeting and talking about brains recently.

We’re still working out with Anne’s school what needs to happen. I have met with her 4th grade teacher and the education support teacher at her school. They have copies of her goals for her behavioral health and her most recent IEP evaluation.

She continues to fail math despite the fact that teacher isn’t even grading the division portions of the tests.

She also continues to fail History and Science, despite studying.

I refuse to continue the path that she is on and graduate her to the next grade when she fails to learn the information in her current grade. It has gone on too long. She needed to be held back in 2nd grade when she was getting 50% on those tests but the teachers and administrators were too caught up in her story to do any background on her foundation of knowledge. Hubby and I are in agreement that she will not start 5th grade if she is not doing better with her grades. I haven’t heard yet if she will have additional testing done since her last IEP request was in Spring of 2013.

I also met with Anne’s behavioral specialist this week regarding her current schedule. She definitely agreed with me that it has been very strenuous and it’s an intensive program to master when you are still working at attachment at home and struggling in school. I will hear tomorrow or Friday whether they can cut back her hours to two days a week. Even then, her program will be prolonged. We know that this is not a sprint to the finish, it is a marathon to mental well being. We just want to make sure that if she is spending these kinds of hours (11 hours a week) that she is getting something out of it.

I have not cut back on Huck’s visits. His counselors have a new case load so they have only been coming once a week. I have also taken the liberty of sending all of the girls upstairs with our mother’s helper so that I have just Huck to focus on. This way we get more of his issues resolved. Not that he talks about anything in depth but the counselors can give feedback that he will at least hear and it isn’t me regurgitating the same lecture over and over again. He is still having issues wetting his pants at school. I spoke with the school nurse who spoke with his teacher and they have him going solo a couple extra times a day. This has not yet helped. Huck’s counselors would like for me to take him into the doctor in case it is a medical problem. We will see when that happens!

Lastly I’ve been thinking about my uncle’s passing. We aren’t 100% sure what happened on December 9th, but in the doctor’s opinions it sounds very close to what happened to me almost a year ago. Something happened with a blood vessel or an artery that caused a bleed and his brain swelled. It could have been an aneurysm or a stroke. I am very aware that his fate could easily have been mine too. I am grateful but also cognizant of every day. It’s hard because I know his body just failed. Some mechanism in his body did not work and he died. We go along every day as if we are invincible, but something that’s the smallest molecule on the planet can kill you in a minute. I’ve had a lot of epiphanies since his death and I’m sure that I will have more. I am trying really hard every day to not sweat the small stuff. I am a controlling person so that is very difficult. But when my uncle died no one cared what car he drove or what job he had. He was loved by his friends and family and an inspiration to so many people. That is what counts. So beyond trying to be a good friend and a good wife and a good sister and a good mother (phew! exhausting), I decided to call the agency and open our home to respite care. I love our kids and even though it’s only been 6 months (6 months since placement, can you believe it??), I think they are ready to help heal other children. They also enjoy socializing with other kids and we certainly have the room for it!


My Heart is Breaking

Tuesday morning my Uncle was scheduled for a heart procedure to replace a weak valve. We were all concerned about complications due to a lack of general good health throughout his life, but it was pretty much an emergency. We texted the few days prior but my schedule did not lend itself to phone calls and he was busy getting ready for his surgery. Tuesday morning before going to the operating room he suffered a brain aneurysm that bled into his brain. He was found unresponsive by a nurse. He is now on a ventilator, he has had a piece of his skull and brain removed to drain fluid putting pressure on his brain, and he has been unresponsive since Tuesday morning. Because of the swelling on his brain the doctors have been unable to see the extent of the damage from the aneurysm. Unfortunately it is not looking great.

My Uncle and I have been very close my entire life but it culminated in my college years. After being diagnosed as bipolar over ten years ago, he was the one that always understood me. Twice my age but always seemed to know where I was coming from. He helped me land my job at a local GAP, which led to my job at Nordstrom, which led me to my job at Louis Vuitton, etc etc. I would not be where I am today professionally without his help and guidance. I also would not be the person that I am today without his support. He is an amazingly charismatic person, always sociable, everyone loves him, a funny guy and joker. The kind of guy that is just friends with everyone because he’s so likable.

I am just so sad. I am sad that I did not speak with him before his surgery. I am sad that I did not save any of his hilarious voicemails that he constantly leaves for me. I am sad that it has been too long since I’ve seen him in person, because we have moved so far from his home in Florida. Most of all, I am sad that he is gone. Even if he wakes up from this traumatic brain injury he will not be the same person. And waking up is even a long shot. I am sad that I won’t get to hug him or listen to his laugh. I am sad that he won’t get to meet my new children and giggle all the way through church with them on Christmas Eve as we have done so many times together. I am sad that he never found his true love, in his 50+ years, he died alone in a hospital bathroom. (I’m saying that he died there because they believe that he is brain dead. So while his heart is still pumping and his lungs are still filling with air thanks to a ventilator, his spirit has been gone since Tuesday morning). I am hoping to go down later this week to Florida but it just depends on how things progress at the hospital and with plans for a memorial.


What Will You Regret on Your Deathbed?

Working with seniors on a daily basis can really change your perspective on dying and death of loved ones. I work hard to make sure this is done most comfortably and lovingly as possible. This link really explains things that I hear from our clients all the time. And I work hard with my own family to make sure that these aren’t any of our regrets. But it really is hard, and I can see some of my family members relating. What do you think?