Two Squares

Everyday after I drop Oliver off at daycare, past the walkers and wheelchairs, past the the wall with the Little Mermaid, it happens. I walk through the white gate, I latch it behind me and there they are. Under the tree. Two unassuming squares on the ground; reminders of babies lost before they ever got to be in Kindergarten. A sobering wake up call every morning of having a medically fragile child; and really he is just that,  

fragile.

On August 1st this year, I (very surprisingly) didn’t even think about that fateful day 3 years ago that changed everything. It wasn’t until I sat to write down this post that I realized that August 1st came and went this year. Perhaps this is a sign of growing into my role as the mom of a special needs child? Perhaps I should be comforted that my mind was on the future and not stuck in the painful past.

What I’ve learned in the past 3 years:

You grow into the hardship. You literally grow a muscle for the ability to handle all of it. My mind is stronger, more organized, more rational, focused on all it takes to keep Oliver alive and well. If only I could have told myself that in November of 2010, when the depression got a hold of me and the tears seemed to be a constant rolling down my face. Thank God that dark season is behind me...

One of our CNA’s said it best when she said, “You you know Stephanie, what is so hard about your situation is you’re not just a mom, you are a caregiver.” So after I’ve been Oliver’s mom, I have to switch right over to caregiver. This is not easy. That is one major difference between my life and most 31 year old mothers.

We’ve basically got a  1 ½ to 2 year old in the very able body of a 6.5 year old. I can’t overstate how worried we are that if he doesn’t develop cognitively and continues to be so physically active,  we will ultimately be unable to handle him. This thought keeps us up at night.

Papa cracks him up

Love this shot of our cutie 

Oliver is back on the medication, (Sabril) and although he is very tired, the seizures are less scary and less frequent (still 1-2 a day). We are thankful for this, but know that adding more and more medications on top of one another is not a great solution. It is hard for Oliver to learn when he is on 5 seriously potent medications, causing fatigue, dizziness, lack of coordination, etc... He is currently taking Vimpat, Ativan, Banzel, Sabril and Onfi (all for seizures). If you took his daily meds I doubt you could walk...

Oliver will continue at Easter Seals for the school year and will be in the Pre-K class. We are so happy that his buddies Netta and Mia (both with epilepsy) will be in class with him this year. They have made a large snuggle corner for these three when they have seizures or need a rest. We’re thankful for the great staff and one more year of familiarity.

Through our doctor in Boston it *appears* Oliver is going to get to be one of twelve of her patients to be on cannabis for seizures. As you may have heard in the media, (thanks to everyone who emailed us articles, etc.) cannabis has been shown to be very effective at controlling seizures. We are hoping all the approvals go through for this. Right now Dr.Thiele is estimating it is about another 6 months out. We still have a great deal of questions, and we’re just at the beginning.

Haley at her graduation

My niece Haley has moved in with us and starts her classes at CFCC on Monday. She has already been an enormous help and lots of fun. It has been a bit of trial by fire for her; she’s already changing diapers (this isn’t an easy task, even our CNA’s have trouble) and giving meds sometimes. We’re enjoying our time with her so much. Since we won’t be having more children, we feel like we’re getting a huge gift in helping her navigate college and being her Wilmington home. Andrew has promised to help her with her Intro to Film Studies class. Perhaps he’ll convert her to a film snob and I’ll never get to see a Rom-Com again in this house.

Andrew finished up on Under the Dome and is now working on Sleepy Hollow. He has been logging some insane film industry hours and coming home with amazing stories of trucks stuck in the mud, being dug out etc...

Lanier Property Group continues to quickly grow, and we’re working with more clients and have more listings than ever. We send a sincere thanks to each of you that have sent your friends and family our way...we appreciate it.

Wishing he could go for a swing, but the rain won't stop

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Toy time

Our second try at a trampoline for wild thing