The Edge Bottom

Our "backyard pool'

April and May 2011 were a blur of doctors appointments and stress. We had finally realized that we needed specialists. In a huge blessing, we got a cancellation appointment at CHOP where I threw myself at the mercy of a pediatric psychiatrist and begged her to help us. Complex Tourette Syndrome requires expertise from a specialist, not any run of the mill suburban psychiatrist. We had made that mistake. It was a big one. We ended up going weekly for 6 weeks. Then 2x a week, then eventually to a psychologist weekly plus monthly follow up with the psychiatrist. (Once we found one who could help us. That took until September.) I spent an inordinate amount of time vetting doctors over the phone, filling out paperwork, getting on waiting lists, interviewing with social workers, and getting services in place to help us help the kids. At one point, I made an appointment to meet with my pediatrician for an hour, without the children, to discuss their care and run down a laundry list of issues. It was exhausting. Softball ended finally. Gwen missed her end of year township league party due to serious illness, but managed to make her CYO softball party. 

Brown Eyes

In early June, in the space of 5 days, the craziness peaked with the children: Featuring 2 Emergency Room trips--one for a bee sting to the eye, one for an accidental drug ingestion, two pediatrician visits and the narrow miss of a hospitalization for a blood infection, a shattered patio table from a quick moving thunder storm, and 4 softball games.

 We had to restrict previously held freedoms that the children enjoyed because AD/HD impulsiveness had resulted in dangerous choices. We were spinning. We circled the wagons tightly, and worked even harder to bring things under control.

Ready for a Road Trip

It amazes me that we found some sparkling places in the midst of all of this. Again, the toddler helped bring us together even when he added tremendously to the stress. 

 The swim season couldn't come soon enough. We all needed the safety net of swimming's familiarity. The children needed the full sensory experience of swimming. Swimming is not just a sport, or a recreational activity, for my sensory seeking, neurologically twitchy, hyperactive children--it is a prescription drug. The benefits of swimming far outlast the exercise of a two hour practice. They literally receive neurological benefits for 24 hours after they swim. This has been noticed and commented on by specialists working with them.

In July, it finally began to feel like we were managing to pull some things together. We still struggled daily helping the girls work through some serious fall out from Complex Tourette Syndrome ranging from physical effects, to complex illnesses, and emotional effects.  Transitioning as a family into a place where you understand that your family life is a system that is affected profoundly by the neurology of each person in it is tough. Never mind the emotional life... Those are the highlights. The Edges.

 The Center is too much.

In July, Gwen swam the Master's Swimming Ocean Mile, in Ocean City New Jersey. The water was 59°, cold enough to induce hypothermia. Gwen's best friend wanted to swim, she finally coaxed Gwen into doing the ocean swim with her. We lined up a family friend who was 16, a life guard and had swam the mile before, to swim with the two girls. Since the water was so cold, the organizers shaved 2 blocks off of the swim. We watched experienced swimmers in wet suits go into the water and then leave the water. The three girls plunged in and never looked back.

The Start

The Finish Line

Cold But Happy


This is a short clip of  Gwen, her friend, and the family friend who swam with  them.

Ocean City Mile Swim 2011

This brings us to July. So much more that could be said. Another day.....

 

The Maiden Box

Last spring, I gave Gwen a Maiden Box. I found a lovely sturdy carboard box with lavender flowers on it at Michael's on sale. I filled it with candles, chocolate, hot cocoa, lotion, body butter, loofah wash clothes, slim teen pads, a journal, a book about menstruation called Period and a book about purity called The Princess Kiss. I sat with Gwen and we talked about her period for a long time read a few pages from the Period book and then I read The Princess Kiss to her.

It was a special close moment for both of us, especially in light of all the turmoil and emotional ups and downs we were all having as a family.We spent quite a few close moments talking about puberty, looking at the Care and Keeping of Me and eventually by the Fall we had our first conversation about the birds and the bees. We continue to have those conversations now. You can't do that once and call it done. It is a series of conversations, that as it unfolds, gets more complex each time we have one.

The Edge 3

Through it all we still got work done, had moments of closeness, and loved each other.

Big Red Barn~Greg's Favorite

Changing Baby

Daddy Love!

The Family Tradition~Nebs

The First Calm Space

The Edge 2

One tiny bright spot that I remember from last June is the day Gwen and Sukey managed to plant 100 impatiens in the back yard flower beds cooperatively.

Greg even got an opportunity in the front yard to help out a bit!

I handed them the flower flats, had them gather gloves and tools, and then sit down with paper and plan out how they would divide the flowers and plant them all.They only got snippy once or twice and managed to plan and execute the entire project themselves.

The Edge

When I look at my posting history I see a huge gap from April of 2011 to September of 2011. I can't fill in that gap completely right now. We are still barely into the edges of that place. The Gap has too much craziness even for me.

Even still I can fill in some....

~Easter 2011~On The Edge~

 We did have a nice Easter. In large part because we had a toddler in the house who brought us all back to a small child's joy over candy hunting.

Hunting Candy Eggs

I will forever remember softball as the beginning of this new phase in our lives where Tourette Syndrome and its accompanying co-morbid conditions became what defined our family. This period of incredible stress shows not one picture of Gwen who warped into a waxing episode with her TS and AD/HD that brought us all to the edge. I had her on two teams and I can't find one picture of her actually playing. And compared to what some TS can look like, hers was not even that difficult.

We know that now.

What was difficult, was watching our girl, who over the past year had bloomed into an amazing swimmer full of confidence, an impressive athlete with Dolphin like grace in the water, who had swam her way to Junior Olympics, disintegrate into a kid who sat isolated in the rear of the dugout,  hair hanging in her face, shaking her head. To a kid who twirled incessantly in the field while a crowd of parents from both teams watched. To a kid that other kids on opposing teams openly stared at and whispered about while some from her own did the same. Disintegrate to a kid who played too rough with the other kids, and chanted random unsportsmanlike cheers that other girls on her team thought were awful, when she was having echolalia and repeating a phrase that stuck out from one of their cheers. A girl, who to cope, finally retreated to hanging out with the coach on the bench and keeping score. I made dozens of cookies for both teams for her to bring to practice to share in an attempt to help her fit in.

 We had left our safe swimming cocoon where everyone had known us for years and we were safe, to enter a new sport, with new families, rules, coaches, skill sets, and expectations. We came out as a family that spring. Gwen because the stress of all the newness heightened her anxiety to peak levels, while her mother kept pace with her own off the scale anxiety. Illustrated vividly by the post game afternoon, where I picked through all the trash cans near our dugout to recyle aluminum and plastic, while other parents watched me and whispered, because my OCD and Anxiety were in full bloom also. We came out because we had no choice. As I watched my daughter literally falling to pieces in front of strangers, especially on her CYO team where I was hoping she would find a safe haven and we would as a family finally meet some families from our parish, I had to say something. I had to explain Tourette Syndrome. I had to explain something that wasn't even clear to me. I had to suddenly be an advocate for my daughter and I didn't know how to do it. As I watched my 9 year old cracking and my husband reeling I knew we had to do something....I had to pull myself togther so i could hold them together.

Then one late night as I was Googling Tourette Syndrome looking for answers, yet again, in despair...I tried a new search. "Tourette PA"

Life Line. Saving Grace. Gift from God. I found the  Pennsylvania Tourette Syndrome Alliance

Tremendously Tough Times. Made liveable through the generous, loving, concerned folks at PA-TSA.

Trying to Figure it all Out

What pictures we do have from softball, are of Sukey, who was going through her own painful transition. What I will say about that~When she began showing signs of TS the summer of 2010, I pushed her underground by saying, "I am not going to do this with you too. Knock it off." I was sure she was copying her sister looking for attention.

Long pause while the impact of that statement sinks in and the chasm of guilt gushes to the brimful.....those details are too painful.

Her struggle with hiding her symptoms and the ensuing anxiety it drove up in her blew up 3 days before her First Communion in early May. Watching your 8 year old daughter swing as hard and as high as she can on a swing and hoot in long peels for a full 5 minutes is....hard.

Sukey received her diagnosis of TS in June despite the maliciousness and minimizing of her symptoms from the nurse practitioner assessing her at CHOP for the neurologist. Within 3 days of being freed from hiding, she was ticcing fiercely at the supper table. Our intimate safe place.

In Her Cage

 Ever the trooper she kept on. Finished out the season and started swimming. Even while she was dragged from doctor to doctor for her, her sister, and her brother.

Having Some Fun

We had some close times. It is hard to remember them, but I have some photos to prove they happened.

Pigpile on Momma

The Cook!

The Baker!

Who is the Teeny Girl?

Beautiful Family

Cute Stuff!

 Mimi and Papa came to town to visit, we celebrated Greg's second birthday, and Sukey had her First Communion. All while we were lost in the softball wilderness....

Happy Birthday Baby!

 

 

First Communion Sweetheart.....

Mimi, Papa, Sukey, & Gregory

Momma, Daddy, Sukey, Gwenny, & Gregory

Papa & Sukey

Momma & Sukey

Hail Mary...pray for us now....

So much more to say. Perhaps another day soon. Doctors, psychiatrists,  paperwork in a never ending trail, more doctors, more psychiatrists, medication, more paperwork.....growing into being a family with special needs children. a place we never expected. A place you can't know unless you live it. Thank God for other families who struggle like we do. They give us strength to go on.