When the unexpected happens: Remembering Travis aka Daddy

As many of you know Travis and I had been separated for the better part of 2018. However when he nearly died from DKA, we decided to see what the future had in store. We had the best 12 weeks of our marriage from Jan-March 2019. The new medicine I was on helped me be the loving and patient wife and mom that I wanted to be. It helped with the focus and helped us grow closer. In February during Dacotah's seizures we realized just how much we needed each other and everything was perfect. We never argued or fought. Travis was so excited about getting healthy so we could travel this summer. It was 100% without a doubt the best time of our lives together.

The weekend of our 6th anniversary we went to Mebane to visit Wes and his family along with mamaw Jean. For the first time ever everyone was happy, laughing, and enjoying wonderful time together. We had no idea what laid just ahead. For our anniversary Travis and I had take out and he got me a new jacket, I got him a new belt and wallet case. We got home late that Sunday evening.

Three short days later I was at karate, Travis went to play basketball with his guys over in East Stone Gap, it was the one day a week that we got a sitter so we could do our own things with our friends. I was in a weak signal area, and when I looked at my phone I had 18 missed calls everyone between the fire chief to his work had called. I didnt' recognize any numbers other than the fire chief's and just thought someone had mistakenly left the office door again. My heart told me something worse. I called his friend Jarrett back to find out that my husband had died on the basketball court. WHAT??? He was fine earlier, I had left him playing at home with the kids, how???

My karate instructor drove me to the hospital, my boss met us in the lobby, and as the nurse came up to tell me she was sorry, I bluntly said Don't touch me, don't hug me I have Asperger's just let me see him. My heart ached for the one my soul longed for, till death do us part does not prepare us to say goodbye.

Telling his mom was hard, I cannot imagine what she had to be feeling but I felt so helpless not being able to hug her, I knew from a wife's point of view it was a hard thing I had to face and tell his family. The absolute hardest was walking into our home and telling our children that daddy wasn't coming home again. Our oldest just hugged me and sobbed. Our son, looked at me when we went to get his car from the gym "where's daddy", Do you see the moon? "Yes", Daddy lives up there in Heaven now. "How did he get up there", well son, God gave your daddy angel wings. "You mean my daddy is a real live super hero". Yes son, he is watching over us forever.

Next was figuring out how to plan a funeral, I had planned my mom's, helped with my aunt's, but this was different this was my husband. Even now as I write this nearly two months later I am shaking from the anxiety of losing him. So I sat down and wrote him an obituary one that told his story ...*It has been edited to maintain privacy of our family*

Well since you are reading this it must mean that I have gained my super hero powers, least that's what my surviving son, told his mom, and his sister. It was a typical Wednesday night March 20, 2019, I was playing basketball (2nd only to golf) with the guys at the local gym, when I was pulled from the ballgame by the Angel of Death and met my Creator. He met me at the gate and beside Him my loving dad was waiting to show me around these streets of gold. You have no idea how awesome this place is, but they need to change the colors to DUKE Blue and UT Orange. Okay, they said I have to get serious so here goes. I left this world for my promised eternal life March 20, 2019. I leave behind my loving wife, my daughter, and my son . My mother. My brother and his wife along with my two favorite nephews. I leave behind a lot of wonderful family, friends, and my golf clubs. My friend better use them wisely. 

Blessings to all, see you on the other side! - "Pickell"

His graveside service was special in that he wanted bag pipes with Amazing Grace played, the kids wanted sparklers to celebrate their daddy, so that's what we had done, we had a celebration of his life. The kids and I, along with our extended family thank everyone for reaching out to us and for being there during the most difficult time of our lives. 

Seizure Activity -Repost from my Facebook post Feb 2019

So the good and bad update: We are home!!! That's the good news that I am very thankful for.

PLEASE do not comment to tell me that person x or person b has epilepsy and they are fine. I know all too well what seizures are after experiencing them personally for several years from age 13-24. It was scary enough to personally experience, but to see our child suffer through 3 in a row one lasting over 45 minutes is not something I EVER want to witness again.

So now that disclaimer is out of the way. Bad news: Dacotah's EEG per the neurologist report "his EEG this morning demonstrated a prominent focus of spike activity from the right temporal region. There is slowing in this region as well". Dacotah does in fact now have a diagnosis of epilepsy (specifically focal seizures). No worries as much as the anti-seizure meds should be able to control them. The SLOWING in the right region is our main concern at this time. This can be due to his genetic chromosome deletions, but it can also be that something "structurally is wrong with his right temporal lobe"; the only way to know for sure is to sedate him for an MRI. Which I will follow-up with his PCP to get that scheduled.

*Sidetrack for a funny comment* Dacotah had thrown such a HUGE fit yesterday while we attempted the first EEG, that when the staff asked about just doing the MRI today as well, the Neurologist laughed and said "sedated, else the tech would be watching his feet disappear as he climbs out of the other end of the machine" (sounds about right lol)

Travis and I want to thank everyone for your prayers, your comments, and your well wishes. This weekend has been very trying and hard, but we are thankful that Dacotah is stable and is back to his normal self. I will update again once we know when his MRI is. No matter where life leads it takes a village to work together to get the job done. Love you all. *hugs*

UPDATE MAY 2019 Dacotah did not have a structural issue per his MRI. We Discontinued his seizure medication after he kept throwing up from the two that we attempted. Instead we turned to Osteopathy and so far we have had excellent results. We will continue following up with neurology in the future. 

Sometimes There Are No Words

Last week I had one of the most gut wrenching days I have ever had as a mom of a special needs son. It was the look on a teachers face when I asked for a bathroom to assist my soon to be five year old in so he could finish pooping in the toilet vs his underwear. Yes, I get it all the time, he looks normal. I had to explain "He is one of your special needs kids" before she suggested and unmarked bathroom at the end of the hall. With all my heart, I wish he was potty trained, but truth is he isn't. We've been trying, we are making progress, slowly but surely he will get there, just not that day.

So as I stood there in the hallway, waiting on an unmarked bathroom, I had raw tears streaming down my face. For sooooooo long, I have mentally fought, "maybe" just "maybe" they are right and he is perfectly fine. Reality slapped me hard, as I handed my son over to his amazing pre-k teacher and asked if she could have the special needs teacher finish cleaning him up. All the while his classmates looked at him screaming "one more hug mommy, one more hug pwease". 

I cried most of the day at work finally the realization that the genes don't lie, that our son will always need a little extra help, it hit home.

We got his CMA report back in December. Last week Dr. Sprouse sent her full report. I took a while to process the new information and that may be why it slapped me harder. It's the realization that no matter what we do, he will always have chromosomal differences that cannot be medically fixed. Per Dr. Sprouse's report:  Dacotah has been diagnosed with Autism Spectrum Disorder, Klinefelter's Syndrome (giving him an extra X chromosome) and two Copy Number Variations of 5q14.3 deletion and a 7q31.32 deletion.

It became more obvious that he was further behind because we have a private FB group for kids with XXY and he was significantly still behind 95% of those boys. The Chromosomal Micro Array gave us the deletions, but it can't tell us how to treat or fix it. I can just say I am very thankful that given what they could have caused, they aren't life threatening at this point.

From his report: At his chronological age, Dacotah is at risk for language based learning disabilities, executive dysfunction, dyslexia (which we are seeing more and more), graphomotor dysfunction, and adhd. He is more reactive than his same aged peers in auditory, visual, touch, movement, and body position. He is more reactive than peers in conduct and social emotional. Dacotah is still a year behind in expressive language. At the time of his test he was 4 years 8 months, and he scored at a 3 year 7 month old level aka 10th percentile. Processing speed was 8th percentile.

I have yet to pick him up from school and him tell me what they did at school that day, who he played with, what therapist saw him that day. I asked him EVERY DAY.... Silence. One day when I pick him up, he will surprise me and tell me about his entire day... I am waiting.

So why share any of this? Because for me it is therapy, it allows me to not carry the burden alone. I don't expect anyone to understand. No two kids are alike, no two disabilities are the same. Some kids on the spectrum talk like professors, some never talk at all. Some sleep great, others can take medicine and never sleep. I don't want to change my son, but I want to give him EVERYTHING I can so he can have the tools he needs to succeed in life. I want to make it easier for him without my oldest hating me because she never had a mom because I was too focused on her brother. I want to learn how to balance and move forward. I just want people to be honest and be open and be alright with listening when the times aren't always peachy. There are hard days but step by step he will get there.