V-Season 2010

V-Season is in full swing. How are your going to celebrate the women in your lives? I’m not talking about Valentine’s Day folks, I’m talking about V-Day. Victory (over violence), Valentine, Vagina. Yep. The v-word.

I’m here to remind you to find out about the shows/events in your community to help raise funds and awareness to STOP VIOLENCE AGAINST WOMEN. This year’s focus is building the City of Joy, a safe house in the DRC. To catch a glimpse of what is going on in the Congo and read about one man making a positive difference in the lives of women there: How one man gave Congo’s women hope.

Eve Ensler’s latest book is released this week as well: “I Am an Emotional Creature: The Secret Life of Girls Around the World” (link to a video of Eve talking about her book and the DRC, ‘Girl Power Can Save the World.’)

If you want to read about my involvement and journey with V-Day, visit my V-Day blog ( not current). I miss being actively involved with it, but I have the memory and accomplishment of my time with V-Day in London. I brought together women from all backgrounds and directed them in a production of The Vagina Monologues. We raised over $6000 to help stop violence against women. And we raised awareness. And that’s that part that I can still do. Every little bit at a time.

Sebastian’s Latest News

I haven’t had much time to update about things with Sebastian as of late. As you know we went to Australia for the holidays so Sebastian could meet Ali’s dad and other great people in the region. We stayed for a month and during this time we didn’t have any therapies. Although I had researched things we could do, everyone was closed for the holidays. Settling back into Cairo was challenging with jet lag and then we went right into therapies.

When I hear from friends they always want to know how Sebastian is doing. Sebastian is doing ok. I could really see a difference in him without therapy and while it’s important for him to have the social time and family time that he got while we were there, he also needs the therapy time, which is why I want so badly to be in a place where he can have all of it.

We have been busy with therapies since we returned and Sebastian has been doing some awesome things like reaching up to crab for toys while laying on his side, extending those back muscles needed for crawling, rolling over onto his tummy and working really hard to get that one arm out from under him that always gets stuck and being so proud of himself for doing so! He’s taking steps with my support, we walk around the apartment, me holding him up and him deciding whether to jump or lift one foot in front of the other. He’s moving beyond the jumping and really taking those steps. He wants to get around so badly.

He’s eating lots of chopped up foods (no more purees, except for chicken), and working on chewing, pulling the spoon to his mouth, opening wide and shoving it in, even though the food falls off most of the time. He’s making achievements a little at a time and he is so proud of himself each time. When he accomplishes something he smiles so big and so wide. We are using boardmaker cards (picture cards with words) to communicate making choices. We keep practicing mimicing tongue and mouth movement and making sounds back and forth. Something fun we have started doing is calling Ali ‘papa-daddy’ in case the ‘p’ sound is easier than the ‘d’ sound for him to make. He knows his daddy and looks in his direction so we attached papa to it so he can understand that they mean the same thing. He laughs or smiles really big each time and looks at his dad. He loves the sound that ‘p’ makes.

Since I’ve started laying down with Sebastian (reading or napping too) his startles/seizures have stopped because he is getting the sleep he needs. Back to our routine he is able to get an hour and a half to two hours of sleep.

I’ve written an extensive update about Sebastian’s achievements, therapies and equipment stuff as well as some future plans over at Sebastian Can Do. So to find out all his news, head on over there. This is just a sneak peak.

I’ve been taking some videos and planning to take some pictures during therapy that I will be posting over there in the next week or so too. Just need to get the internet connection to cooperate.

Love and Forgiveness

My dad and I have a rocky history. When I was 15 my parents went through a divorce, and us kids went through it too. It affected all of us differently. My dad did and said some things that pretty much severed our relationship. I didn’t know how to forgive him and the pain he caused me, or even the way he had treated my mom. It would do no good to recount those exact memories, those exact trespasses he did against me. Because I have forgiven him.

I read about forgiveness in the Bible. I learned about it in Sunday school. I said it in the Lord’s Prayer. But I don’t think I really understood what it meant to forgive someone until my brother Josh died. I had to make the phone call to my dad with the police man standing behind me, looking over my shoulder to the pictures of us on the fridge in the kitchen. I had to tell my dad that Josh had been rushed to U of M because there had been an accident. He had gone bridge jumping/swimming with friends and had gotten caught under the current of the water. I had to tell my dad that his son may have drowned. When was the last time I had talked to my dad before this moment? I don’t know. I was 19.

I remember arriving at the hospital and seeing Josh’s friends. There was an area, a small tent like room, set up for family members waiting for news. That’s where I found my dad. He was a blubbering mess. We hugged. The doctor came and asked if we wanted to see Josh. I don’t remember him being connected to anything. I think he was in a trauma room. I remember seeing him lying on the table and hearing my dad’s cries. I remember my dad’s vulnerability. His humanness. I remember his fear. His sadness. It was in that moment that I forgave my dad for everything he had ever done to cause pain in my heart. I forgave my dad because at that moment, as my brother lay dying on the table before us, I realized what is important.  It was not keeping my father at a distance from me to rob him of knowing his only daughter as she grew into a woman. I forgave my dad and I put away the things he did which had caused my pain because they were no longer important.

Since then I have created a new relationship with my dad. We never talked about the things that happened. We didn’t need to. We accepted each other back into our lives and moved forward. I try to call him every couple of months. At first it was hard, knowing what to say. But as time went on the conversations became easier and more natural. Now I’m surprised when a half an hour goes by before we get off the phone. We share our lives with each other now.

When Ali and I had our wedding celebration in Mi, we drove down to Kentucky, where my dad now lives, and he met my husband. And they had a fabulous time together. We never talk about my brother (which is different to my mom and I who talk about him often), but the day before we left my dad got out a box of things he had long ago packed away. After my brother had died, he sold everything and moved out west to Nevada. The pain from the loss of Josh had been too great and escaping the memories in the home we grew up in was all he could do. Now in Kentucky, the boxes had traveled back with him. He opened up a box in which many things from my childhood remained. Old stockings from Christmas. And pictures that I had not seen in years. He gave me the stockings and many of the photos because he thought I would do something with them rather than keep them in the box. It was an emotional time for my dad and me. We shared the grief from the loss of Josh, as well as the loss of the years we had between us before forgiveness, ten years later.

Now my dad even calls me sometimes. When Sebastian was born, he was calling every other day to make sure that I was doing ok. He prayed and stayed positive but I know that he was also hurting because I was hurting because now my son was in the hospital.

I have a picture of my dad and Josh sitting on  my dresser. In it my dad is holding Josh up in front of a mirror. My dad is young, with a full head of jet black hair and a big beard. Josh is a baby, maybe a month old. My dad is a beaming, proud father.

When I was faced with the loss of my brother, I realized that life is short and that the people in my life are important. There is no time for grudges. There is no time for pain to fester into something ugly that blackens all who come into contact with it. I loved my brother tremendously.  And writing in the past tense about him will always be difficult. I didn’t get to tell Josh that I loved him before he died. I didn’t get to tell him the I forgave him for being a little punk teenager.  And it took me a long time to forgive myself for that.

But I realized that life can be short for some. And that I need to hold the people in my life close to me. And love. ‘Love is all you need’. And forgiveness. I wasn’t reading about it in the bible anymore or listening to someone preach its importance. I was living it. I was feeling it. And I was free. Free from the pain. Free from the heartache. And all that was left, was love.

Wordless Wednesday: My Gorgeous Boys

2 for 1 Calendar Sale

With just under 200 calendars left to sell, we’ve decided to sell the rest with a bonus: buy one, get one free. Each calendar purchased you get another free. With 11 months of the year to enjoy this gorgeous calendar, you can’t lose. And with Valentine’s Day coming up you can easily keep one for yourself and give the other to your Valentine (awwww). The PayPal link will stay the same; you will just find a second calendar in your envelope when you receive your shipment. No extra shipping costs apply.

I’m happy to say this deal has already created a surge in sales and I’ve just sent out 5 more orders this morning (well, ali made the trip to the post office). I’ve also sent 20 calendars to the creator/designer of the calendar so that she can sell them on in London. That means we have 170 more to sell, or just 85 orders left to fill. We can do it!

I’m currently working on an updated tally for funds raised minus costs but if you read the post on Sebastian Can Do you can see it gets complicated with different currencies, etc. Thanks for all your continued support. I will also be posting an update on the equipment front and perhaps some vids of Sebastian doing some things with his mama on the Seb Can Do FB group and blog.

Get your calendar today!

Werribee Open Range Zoo

Sebastian’s Granny and Pop (ali’s parents) took us to the Werribee Open Range Zoo while we were in Australia. Animals there actually have the space to run around and live in a space akin to their own habitat, even among other animals. It’s the closest thing to going on an African Safari without actually going on one! A dream come true for me; although my dream is to take Sebastian on a real African Safari for his third birthday (wouldn’t that be the coolest?!).

I have an interesting history with zoos. I went through a period of time were I was very anti-zoo. When I was a freshman in college I had to write a persuasive paper and chose to write about Zoos: Inhumane homes or refuges? I learned a lot about zoos and how different zoos operate. I learned that every zoo is an individual case for how and where they get their animals and also how they house them. Some zoos are not humane and I won’t visit them. I’d say the zoo in Egypt would fit that list. But there are many other zoos that are doing things right. One of them is the Detroit Zoo; many of their animals have been rescued from situations less than ideal (the lion housed there used to live in a crack house).

Werribee Open Range Zoo is another one of those places that is doing things right. The animals have so much space that we took a big safari type bus around to see them all. They can do things like mark their territory with their dung (rhinos) and hang out with the zebras in their free time.

There are walks you can also go on to see different animals up close, through bushes, near trees. There was a moat separating us from the cheetahs to keep them from racing towards us and with a glass wall nearby so the cheetah could also walk right up to us, checking us out without feeling caged. This picture below is not cropped. The cheetah came this close to us and then turned the other way once reaching the glass.

Sebastian enjoyed seeing the animals, but the bus ride got to be a bit too much for him toward the end as he was getting a bit sleepy. It’s one of those things you say you are doing for the little guy but there is a part of you that really wants to enjoy it too. He enjoyed being in the stroller and getting picked up by his dad to see the animals and other fun things, but was asleep as we walked up to the exit.

Our gorgeous boy in one of the zoos exhibits.

For the rest of the photos, here is the guest past on flickr. Enjoy!

always something to say about sleep

Sometimes I wish the thoughts in my head in the middle of the night while I am up with Sebastian could just go directly into my journal or onto my blog. The time to actually get those thoughts down seldom comes these days. While Sebastian has been getting back into a routine after being off of it for a month while we were in Australia means the afternoon naps have been pretty sporadic. It’s a domino effect and so I don’t have that down time for myself which leads to utter exhaustion by the evening after he goes to bed. If the internet if even working (we’ve had some dodgy internet days since our return), I just don’t have the energy to do anything but veg out with my husband. But that’s nice too.

There are so many things to update about! And then what happens to the every day stream of consciousness or things that happened worthy of reporting or remembering? It all gets mixed up and sometimes makes its way to the ‘outside’ world. There is a bank holiday today so Ali has the day off which has given me about an hour and a half for me while he takes Sebastian to physical therapy. Mmmm. Nice.

So, where do I start?

Sleep. Or lack of it. I need more. And so does Sebastian. He was up for the better part of the night last night with a gas bubble after trying so hard to go back to sleep he eventually just gave in and decided to be awake for awhile. Nap time will happen today, even if it means I join him again as I did yesterday. Because the seizures/startles happen when he doesn’t get enough sleep, it is my priority to make sure he gets a good nap every day. If that means napping with him or lying with him and reading a book while he sleeps, that’s what I will do. On days like today when I didn’t get much sleep the night before, I welcome the sleep. Other days I will be happy to read.

When Sebastian is overtired he will startle in his sleep and wake up, if he is alone he cannot go back to sleep. If I am there with him, just holding him or touching him, he closes his eyes and drifts off. His arms go up and his whole body is jolted out of sleep which makes it difficult to settle back in on his own, so I push his arms gently down and settle him. Although he is a heavier sleeper at night, the sounds of the afternoon (cars revving in the parking area just outside our window, folks beeping their horns or shouting up to an apartment above us) also startle him out of sleep too. Before we went to Australia, he was sleeping for about an hour and a half to two hours every afternoon. So we are working on getting that again because those naps were not consistent with all the people and places we needed to go while in Melbourne, not to mention the new environments for sleeping.

I read about other moms of kids with CP and the sleep challenges their children have. I feel blessed that Sebastian really is an ok sleeper. With the type of CP he has, his body relaxes and it’s like the CP is sleeping too so he can sleep comfortably without tight muscles. He also sleeps for about 5-6 hours before waking in the night to nurse a little back to sleep for another 3-4 hours. Some nights he sleeps through for 9-10 hours. Those nights are rare and I don’t know how he does it or what is different, but I’m sure happy when it happens! It doesn’t matter if he doesn’t have a nap and is exhausted, that doesn’t mean he will sleep through the night. As many of you moms out there know, a routine with a good nap during the day can ensure a better sleep at night.

Aside from the startles, air bubbles play a big part in keeping Sebastian up. Because he does not sit up on his own yet or crawl around or walk, getting the air bubbles out is not easy like it is for us because his body is not strong enough in the trunk area. So we keep working on it and I know it will come eventually.

Pour My Heart Out

I read a lot of blogs when I can find the time. I try to check in on my favorite folks and their kiddos.  There are a lot of CP moms out there who really pour their hearts out and share everything. I have a friend that told me once I was a private person. I thought this was the funniest thing since I keep an online journal. Doesn’t that mean I share my thoughts for anyone who is interested in reading about them? One would think so. But I censor. It’s horrible to do so as a writer, but I can’t help it because I know a lot of the folks that read my blog. And maybe I don’t want them all to know everything I’m thinking. Or feeling. Or doing.

I wish I could pour my heart out too. I wish I could reach out when I am going through something and just let it all out. It would be healthier for me if I could. Afterall, that’s what I used to do when I kept a paper journal by my bedside. I still have one of those. You know, the journals from decades before the internet posted our thoughts and feelings. But that journal goes untouched for long periods of time. The last paper journal I kept was the one I started when I was pregnant. I used to write in it during my commute to work. Pregnancy stuff. Then when Sebastian was born, I used to write him letters in it while I was in the milk room in NICU, pumping breast milk for him. Then he came home and the next time I wrote in it was on my first outing ever without him, to get my hair cut. Then there is a big gap in time.

Most recently I picked up that journal and wrote a letter to Sebastian on the day he was diagnosed with epilepsy, which was the same day my grandmother was buried. I’ve been quietly processing it all this time. And wanting a second opinion. Just to make sure. To make sure those startle like moments where his arms and legs go out and his eyes go wide and he can’t seem to move until I touch him, to make sure those really are seizures. Those moments he seems stuck and he lets out a frightened cry because he can’t get out of it. Before giving him a medicine that I haven’t even had time to ask other CP moms if their kids have taken it and if so what kind of side effects do they have, I want to know. Are they really seizures? I’m scared. I’m scared to be in Cairo because we have to find a doctor that can monitor him on this medicine to make sure it doesn’t hurt his liver. I’m scared to give him more medicine. Medicine that is so strong you have to gradually increase it and gradually go off it should it upset his stomach too much or have another horrible side effect.  I’m scared the medicine will make it harder for him to develop, that it will slow things down.

When we were in Australia we saw lots of doctors at the Royal Children’s Hospital. That’s what we do. We don’t go on holiday/vacation. We go to see our families and then we play catch up at the doctors and try to fit in all the appointments we should have been doing all year through but haven’t because we live in Cairo. I’m not even going to talk about how that makes me feel.

Sebastian had an EEG to check out the startles he began having April of 2009. I was worried about seizures because he had them for two days after his birth so we knew that it could be a possibility. There was seizure activity on the EEG, but he didn’t have one during that time and the only real way to find out if the startles are seizures is to do an EEG until he has one. I’d like to do that. Just to make sure.

The neurologist diagnosed it as spontaneous focal epilepsy. Which means they are small and there is no damage being done and there is nothing that sets them off. They happen when he is over tired. There is no side effect afterward. He stops when I touch him and recently he’s even stopped on his own. So I’ve got to know for sure, are they seizures? I don’t want them to be.

I want to start HBOT again because when he does that, those startles, those seizures, they don’t happen. So that’s what we are going to do. And I’ll try to start pouring my heart out. A little bit at a time.

Mother, Grandmother, Great-Grandmother, Great-Great Grandmother, Sister, Wife, Friend, Aunt

Birth date: April 14, 1935
Death date: December 28, 2009

My mom asked me to write something for my grandma’s funeral. As writing does, it has helped me heal and made me feel a little closer to my family during this time of loss. My mom asked my cousin L to read it for me. It made perfect sense. L was one of three sisters who we always called ‘the girls’. I grew up with them. I wore their hand-me-downs. We had adventures at the in between table on Thanksgiving because we were not quite adults but not kids either, just starting to enter the teen years. They were older than me, L being a year older, and her sisters a year older each. It’s been a long time since we’ve hung out. They had kids and I left the country. It seemed so fitting for her to read this in my absence. And now I share it with you.

There is a photograph of grandma on my fridge at home. In it she is seated on my left, with grandpa on my right. Grandpa and I are looking at each other. We are arguing playfully about something that doesn’t really matter much to either of us, but we enjoy sharing our views. Grandma is looking at the camera. She is telling us to stop arguing; fearing that the smiles on our faces will disappear and the talk will turn serious. I love this photo. I love how it shows the love we all have for each other and the playfulness of our discussions. Grandma wanted to keep the peace.

She was an amazing woman. A mother who birthed eight children and helped take care of countless grandchildren, great-grandchildren, nieces and nephews. I have so many clear, vivid memories of her. Starting back when I was just five years old, staying the night at her house on Lafayette Street in South Lyon. As thunder cracked overhead I backed myself into the corner between the living room and hallway, scared out of my wits; I screamed and she came running. She embraced me and took me to the kitchen to make me a hot bowl of Cream of Wheat. Grandmas do that. They draw you under their wing to keep you warm and safe from the world outside. She had a lot of grandchildren and she loved and adored each one.

Even with the distance, Grandma was always a part of my life. Just like she has been a part of yours. You can find her in the kitchen, in between the pages of old cookbooks and hand written recipes. Her voice over the telephone telling you how much butter to use and reminding you to sift the flour. The advice about all things important and even the unimportant things, letting you know what she thinks of this or that. In the hem of your dress or pants, fixed by her seamstress skill and long, strong fingers. The puzzle pieces arranged in groups and waiting to be fitted into the 1000 piece puzzle on the card table in the living room. Even the puzzle on the shelf at the store that you think about getting her as you walk by it just because you know she loved puzzles so much. The memories of her warm hugs and soft smile, happy to greet you whether it’s been a week, a month or a year.

Women like Nancy Mayo put other people first. She supported her children and grandchildren. Even her great-grandchildren. With her humble lifestyle she still pressed money into the palm of my hand to help pay for her great-grandson’s therapies while we were visiting Michigan this summer. She longed to hold him for a bit longer, but her body was too weak to allow her that pleasure. As they sat side by side on the couch in her living room, he looked up at her and smiled. Fussy only moments earlier, she had a way of calming him, like she did with all of her grandchildren and children. Always just a phone call away with a listening ear and the advice you were searching for, especially in the days when travelling got to be too hard for her.

Grandma will be missed in so many ways. But she will remain always in our hearts, as a happy memory of time spent in the kitchen, the living room and on the other end of the phone.

Grandma Mayo

Grief. Emptiness. Shock. Sadness. Anger. Pain. Numb.

Nothing and everything.

Memories flooding in. Sifting through my mind to pick out the memories of her. Of us together. Of the ways in which she touched my life.

There are a lot of things in my kitchen that will always remind me of my grandma. The cookbooks from the 1930’s  and 40’s that she gave to me. Published in Detroit, where she grew up. The sifter to sift flour and the special pan to make pancakes. The baking pan for Wedding Tea Cakes, the desert she made for the wedding shower my mom had for me in Mi. while I was in London and we did it all via skype.

Just before we left Cairo for our holiday in Australia, I was going through the closet, packing some sweaters away that I wouldn’t be wearing for the winter because they were too bulky. I hesitated when I came across one my grandma gave me. It was a shawl type cover, knitted. I almost packed it away but decided not to. Now it waits for my return.

I’m going to take a bath. I’m going to remember the smiles and conversations. The summer we both lived at my mom’s. How much I learned about her, from her. The skirt she helped my mom sew for me. The advice she gave me on the quilt I was sewing. The stories she told me about her childhood.

I hate being so far away from my family. I feared this would happen. I knew that it would. My grandma just died. And there is no one around me who knows her. Who has hugged her like I have. Who has grown up knowing her their whole life.

I’m thankful I was there for a couple months this summer and she got to know Sebastian. I’m thankful we were there last Thanksgiving and she got to know Ali. But I’m always going to regret not being there now. And accepting her being gone without being there, I don’t know how possible that will be.