“Somewhere in the vicinity of the heart… I feel somethin’ hittin’ me awful hard…”

Merry Christmas, Happy New Year to you all! I hope you had a wonderful holiday season. We spent Christmas up in Syracuse with my family and we got to meet our new nephew, Luke! What a looker he is!

I can NOT get over the warm weather, but of course Pompey did not (could not) disappoint and delivered a white Christmas after all.

(Insert pic I forgot to take of snow covered trees!)

But here’s some kiddo pics…

So you guys know where we’re at, Sarai had to have an EEG on Thursday. I was dreading this appointment because they’re just awful. Sarai has to be sedated, she almost never stays that way, the techs get aggravated, I get upset, Sarai can’t eat, it’s just rough. This was really supposed to be to get a baseline, see what her brain activity is like now that she’s been off all medication for 6 months, but the EEG showed some “spikes,” and I knew it as soon as I saw them on the monitor. They’re not seizures, but could mean that she could start having seizures again. The doctor wants to review her chart and call me next week. I don’t know what to think, I’m super upset, I’m afraid we’ll end up back in the hospital for a 24 hour (which could end up being a week or more) EEG to test her, start some new meds, see how she reacts, etc. Meanwhile, we have seen nothing but changes for the better in her development and temperament, so I guess I try to focus on that, but it’s hard…

I’ve been spending a LOT of time surfing mommy blogs. Some are just to make me laugh, and they usually do, out loud! And some are hard to read, about mom’s of kids with special needs. They put my little blog to shame, they write so honestly and I feel like I know so many of them. One mom was sent this by a reader, and it just really touched me. I can’t stop thinking about it, and of course how Sarai is such a brave, little soul…

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.

People gave from their hearts.

Those that were always too busy found time.

Many began new spiritual journeys, some regained lost faith - many came back to God.

Parents hugged their children tighter.

Friends and family grew closer.

Old friends got together and new friendships were made.

Distant family reunited, and every family spent more time together.

Everyone prayed.

Peace and love reigned.

Lives changed forever.

It was good.

The world was a better place.

The miracle had happened.

God was pleased.

I know a lot of brave little souls out there, some of you reading this have one very close to you, and I’m thinking about all you guys all the time.

Whew… on a lighter note, Sarai will be evaluated next week for a therapy called the Therasuit Method, or EuroTherapy, or just the Therasuit. It would be a three week, 5 days a week, 3 hours a day, intensive program. We’ve heard some great things from parents who have tried it, and not one person has reported a negative experience. The place is in Queens, we’ll know more about it this week.

Thank you guys for keeping up with what we’re up to. Your support is so important to us. Love you all!