It feels like a miracle

My dad and I took a very special trip. Just him and I to see Grant. My dad hadn't seen Grant since Oct 11, 2017. I hadn't seen him since mid-May. I cried in anticipation. This trip was different and it wasn't because Scott had to stay home.

Dad and I at Fells Point taking a stroll.

Grant had started ECT. He turned 11 on June 13 AND he had his first appt. This was a big day. I didn't know what to do. I was stuck in Mpls. I had a closing on the 15th and I had a plane booked for the following week. It was a miserable few days realizing I wasn't going to get to MD by the 13th. I was not where I wanted to be (Mpls). It wasn't the easiest week to be apart from him, but before we knew it...we had landed. It was June 20.

By the time we walked through the door of KKI, he had received 4 ECT treatments and what unfurled before me was what my personal dreams were made of. Grant lit up like I had never seen before. He went to me and his "papa" as fast as he could. He was elated to say the least that we had arrived. I wish I would or could have recorded the moment for both my dad and I. We were so emotional it was a blur of happiness. This was the things we wish for on xmas and b-day's. This is pure joy.

Grant's mood remained consistently content to extremely happy during our entire trip. ECT has radically changed his emotions in the most positive way. One of my biggest concerns for my son has been is seemingly random tears and "roller coaster mood". My dad and I don't see him unexpectedly cry. He is never low. He is content in his skin. I can't put into words how profound his mood has changed.

In addition, he is asking to play with toys. He loves this toy called a Word Whammer. It's a spelling toy. He was spelling words without prompting. MIX, CAR, BAR...I was getting distracted by adult conversations. I would look down and he had changed the letters to POP, MOM...cue tears.

Grant had lost interest in toys (for the most part) as the years had gone on. This. was. amazing. All of the things we had shown him years ago were being shown back to me. He wasn't putting on a show. He wanted to spell with me.

His lead therapist gave him snacks, gave him lunch. He would sit at regular chair, at a regular table. Her hand hovered over his as he fed himself. He had no interest in throwing his food across the room. He didn't try to trick her to do something extreme. He just ate the food.

No more than the other day I swear I was in Kennedy while my son screamed and cried. He had THREE adults basically forcing him to eat while he purposefully threw up his meals. He was losing weight. I have many, many times walked out of that room with tears of anger and upset rolling down my cheeks. I desperately would try to compose myself.

4 ECT appointments and look where we are. Can this be real?

Now I have to attempt to stay level headed. There are people where ECT stops working or it becomes less effective. There is also the quiet reminder that once we start this, that we need to take him about once a week. There is no "getting off this train". This is our new normal.

If you didn't read my last post and maybe I failed to share the details...this is expensive and could deeply affect future employment getting him to his dr appts. As of this time, we do not have a 100% yes for treatment in Minnesota, but we have 2 strong maybe's and so we are hoping to not to have to move out of state.

But, all of this seems like nothing compared to how great our last trip was. And I have decided to share one of the best things for last... which is Grant is finally not hitting himself like he was even a week before. The team has done some calculations and he is now finally at the 80% reduction of when he came in. Good or bad, it took ECT. Meds nor behavioral techniques were enough. This means he is hitting himself about 12 times an hour compared to 300 on his worse days. This information is from the last week. The team has hit their goal.

When Grant hits now, it's much softer and it's much easier to prevent. He is not as fast. There isn't the immense force of someone trying to knock themselves out. It's more predictable than it's ever been. Because of his arm restraints, he had evolved the behavior to slamming his forehead into his knee...I don't remember seeing that this week. He doesn't really need the arm restraints, but remember this is new. I am certain they will be faded.

As for coming home, well he will most likely not be home this summer. His new discharge date is in September. This mom will be traveling to Maryland as much as I can, while working hard on my business. I appreciate any and all referrals to make this work. I believe I need a job where I can be flexible and am not sure an 8-5 will be realistic for my son in the years ahead (I can write about that more on another day). Until then...I am celebrating. I am hopeful. This does feel like a miracle. This is not scary like it might have first felt like. Prayers, hopes, and positive thoughts for my son that this will remain the answer for YEARS to come or his lifetime. Because if so, his life has a very, very different trajectory that has gone from feeling impossible to as of today...a reality.