This Rollercoaster Called Life.

Oh there is so much to blog about! The last week or so has been full of feelings, energy, surprise and little sleep.

If life is a roller coaster, then I'm riding it. Now, can I scream to eliminate the fear, such as when I'm at an amusement park? Can't you just envision me walking around the suburban world screaming with my mouth wide open, my eyes shut tight and the wind blowing my hair back?

So, if you want to keep reading, please do. But I warn you, it's all emotional and raw and long winded.

For the moment, I am angry. Mad. It's a cover up for the sadness, but I'm going to let it be for one more night. Tomorrow is a new day, a new week, a new start.

Thursday baby R went for his MRI. It was heart wrenching to hold him as he was "put to sleep", singing to him, keeping eye contact, while he sobbed and struggled to get away. Then once asleep, stroking his cheek and saying "see you soon" broke my resolve and the tears started. I waited anxiously outside the room for 1 hr and when I heard his cry I was on my feet outside the door waiting for the nurse to let me in. I couldn't wait to hold and comfort him. Once in my arms, he only wept for a moment or two more, then snuggled into my chest & neck while we rocked in the chair. Ah, peace for all. It's such a wonderful feeling to have your child back in your arms!

On our way out, we stopped for sustenance at the cafeteria as Bup hadn't eaten for 23hrs. Poor fella! This is where I noticed that he was no longer using his right arm. Then he had a seizure that was more intense and different than any other, so off we went to Emerg. Where we spent 3 hours before being admitted. In the meantime, my poor husband only had bits and pieces of what was going on as I was sneaking calls in when I wasn't supposed to be using the phone. B was frantic with worry. Thankfully he and W came up to the hospital and were able to see for themselves that Bup was ok, just things were a little out of wack.

I'm so glad that I stuck to my instinct in that moment at the cafeteria. If there's one thing a parent should always follow, it's their instinct. That little voice in your head that tells you something isn't right, that there's a better way, etc. Listen & act. It's invaluable!

Because of going to emerg we were able to get the results of the MRI very quickly as well as an action plan. Much better than waiting at least a week.

It turns out that our Bup doesn't have Epilepsy! He has Tuberous Sclerosis, which seizures are a symptom of. So, now we have more learning to do, more specialist appointments...Cardiologist, Nephrologist, Occupational Therapy, Physical Therapy, Speech Therapy, and Opthamologist. Whew! Tired already just writing about it. New med routines to try. Right now we're trying Vitamin B6 to complement his current med regime. Hopefully, this will work to eliminate the seizures and then a second anti-convulsant won't need to be added. The side affects aren't great with anti-convulsants. I would hate to see his behavior and personality affected, his vision, etc. So, I'm praying that the Vitamin B6 is the ticket! This is just one step in Bup's roller coaster ride. The upcoming specialist appointments will bring more information and answers.

I know we are lucky that Bup is as healthy as he is and for this I truly am grateful. Yet, right now I am struggling; struggling to not be angry, spitting mad. Not at any one, just MAD! Mad that this has happened, that our little wonder has to deal with this for his whole life. MAD that I don't have all the answers and can't fix it for him. MAD. And underneath that is the sadness. My whole being aches for R. And I know my favorite husband's does too. But if I allow myself to be mad for a day or two, I won't break down, lie down and weep until there are no more tears, until my head is the size of a pea, a Beetle Juice head, because it is so dehydrated from all the crying. This anger allows me to get up and get going. And it will subside. Tomorrow will be better. Tomorrow is Monday. A new day. A new week. A new outlook. A new moment to hug all my boys, love them all, chase and tickle and giggle and collapse exhausted at the end of the day. Thank goodness for Monday. (Now there's a switch!)

This roller coaster we're on....I wish I wouldn't have bought the family pass. Should have asked the boys to sit this one out. Oh well, we'll ride it together, hold hands and let the wind blow our hair as we whiz by.