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We are Melbourne bound one week from today. ‘How can you afford to go to Australia?’ I can hear you say it or see the look on your face while you think about it. Maybe I am just paranoid, but I spend my free time creating fund raisers to raise money for Sebastian’s therapy and equipment because we can’t afford it on our own and we are going to Australia?! It’s true, and we can’t afford that either.
We live in Egypt. I know. It’s so exciting, isn’t it? Sometimes, yes. Sometimes I have to create lists in my mind of the things I like about living here to keep sane. Other times I just give in and dislike it. I miss my family. I want Sebastian to have everything he needs to help him achieve everything he can. Blah, blah, blah. I am not going to complain. This is life. This is where we live right NOW.
My family is in Michigan. Ali’s family is in Australia. He also has extended family in the UK. He was hired in the UK to work in Egypt. So every year he and his immediate family (that’s me and Sebastian) get a paid trip back to his ‘home’ location. Technically, that’s London. We were planning to go to London this year because although Ali hasn’t been back to Australia in a couple years, we couldn’t afford the trip. I mentioned this to a very good friend of mine. Her husband works for an airline. He was able to find us a flight that we could almost afford. Ali’s company put the cost of our flights to London against the cost of the trip to Oz and we got a deal! The three of us are flying to Australia for the cost of what it took Sebastian and I to go to Michigan this summer. Nice.
Now we get to introduce Sebastian to his Pop (ali’s Dad), and maybe even a kangaroo or two. We also get to meet some really great families that I have found to be a huge source of support and encouragement for me in the blogosphere, and I am so excited. Sebastian will also get to see a developmental pediatrician, something he didn’t get to do in Mi. He will also get to trial a gait trainer (for the whole month!) to help us learn what is best for him so we can then use the money from the fund raiser to buy one. He will also be able to try the seat2go and we should be able to purchase it while in Australia. AND, suit therapy is located in Sydney. So if we can afford a short trip there then we can also see about getting Sebastian a special suit that will help him use his body more efficiently and intentionally. Sebastian will get loved on by lots of really great folks. And so will we.
Wow. Sebastian is going to have an awesome time in Australia. And so are we.
We will be gone from Dec. 14-Jan 13. I hope to post periodically while we are there. I have a good friend coming to town tomorrow so we get to do some fun things this week mixed in with Sebastian’s therapy, so not sure how much I will post before we head out. But I do have a lot to say, so I may be back once or twice more tonight!
As for that fund raiser…thank you to those who have purchased a calendar already. Thank you to those who plan to purchase one in Australia. Thank you for spreading the word even if you aren’t in the market for a calendar yourself. For the rest of you, get your order in this week to get it in time for Christmas. I’ve also sent a bunch to my mom in Michigan, so she can get one to you easily if you are there without the shipping cost. Just get in touch with me about that…leave a comment, send an email, etc. We sold about twenty at the Maadi Women’s Guild Christmas Bazaar this weekend. The best part was getting to talk to folks and raise some awareness. And selling the calendars was pretty great too. We still have over 300 to sell! Yikes! Spread the word!!!
My new favorite photo. Taken in Dubai Children’s Park.
I’ve been having a bit of trouble with uploading photos to flickr due to our poor internet connection. So hopefully they will be uploaded slowly over the next week and I will have time to write and post about our short trip there.
There aren’t many green, play spaces here in Cairo. Which is unfortuntate, especially as winter is approaching and it’s cool enough to spend time outside after a long, hot summer. But we recently joined a club – paid for by the company – which allows us access to some very nice play spaces for both Ali (basketball) and Sebastian (swings!). I like the swings too, although we did get told off because the swings are for the kiddos, but I convinced them it was ok for me and Sebastian.
Below are some pictures Ali took with his blackberry while we were out yesterday afternoon. Fun times. Sebastian was besotted with a little girl over on the swings, which is why he’s not looking at the camera in most of the photos!
It’s too early in the morning for pictures! I love how they are making the exact same face!
Photos taken when we were in Michigan in August.
While we were in Michigan we saw several doctors. When we first arrived, Sebastian was quite sick and soon diagnosed with pneumonia. Thankfully, he recovered quickly. We went to see our family doctor because that’s who we’ve known my whole life. He is not a pediatrician, but was helpful and able to guide us in the direction of other doctors to visit while we were in town. Thankfully, we have very good health insurance through Ali’s company. Our insurance is based in the UK but international so it covers us anywhere. The tricky part was finding doctors that took our insurance. And we did. In Southfield and Detroit, about 50-60 minutes drive from my mom’s. But we were in Michigan, and in Michigan, you drive places!
I’m going to run down the list of doctors and procedures we had while in Michigan. These happened mostly the second month we were there and in some cases the last week we were there. This was because once you find a doctor, then you have to get an appointment and sometimes there aren’t any for weeks at a time. In our case, I had to explain our situation so we could get in when there were cancellations. If you didn’t hear from me while I was in Michigan and we were planning to talk or even see each other, I think you will understand why that didn’t happen after you read our list (coupled with therapy treatments).
Neurologist: Southfield. We went to the MIND Institute. The neurologist did a basic check up and didn’t tell us much of anything that we didn’t already know (since I know my son so well). He did refer us to several other doctors. Which was a big help because you can’t see other doctors without a referral. I did not know this!
Ophthalmologist: Southfield, part of the Children’s Hospital of Michigan. Great doctor. Had over twenty years of experience with CP kids and was able to diagnose Sebastian with strabismus, and prescribe him some pretty cool eye glasses. His strabismus is NOT related to his CP so can be corrected by his glasses. Sweet. We saw him twice.
Gastroentologist: Southfield, also part of Children’s Hospital of Michigan. Recommended two tests for Sebastian’s reflux. Barium Swallow test and Mag Airway test. Both were AWFUL. Traumatic for all involved. Went down to the hospital in Detroit for the tests a week after the initial appointment. No one warned me what the tests would be like but when I later mentioned them to the physical therapist, she was like, ‘yeah, those are tough’. Thanks. It would have been nice if anyone could have told me my son would be velcroed to a board from head to toe and rotated under an x-ray machine (Mag Airway) then forced to drink disgusting, thick, white, chalky serum and rotated again (Barium Swallow). It was actually comical that the nurse thought my son could be soothed by a bottle of this stuff, while being strapped down to a board, unable to move, a child that breast feeds and does not take a bottle. Not so easy. We used a syringe. A big one.
Ear Nose Throat: Southfield and Detroit; Children’s Hospital of Michigan. This was for Sebastian’s stridor. Essentially to see if/how it was connected to his reflux. He had the initial appointment in Southfield and after looking at the results of above tests, was scheduled for an endoscopy, 6 days before we were leaving the country. While he was under for the test the doctor decided to do minor surgery on his epiglottis, making two small incisions on either side because the flap was falling against his vocal chords. What was supposed to be an outpatient event turned into an overnight stay at the hospital. I don’t even need to go there and discuss the extreme pain killers Sebastian was put on or the lack of sleep we both got. The amazing thing that happened was that I saw Sebastian swallow for the first time, purposefully and carefully. We have since seen a decrease in his drooling, except when those teeth are coming in. He was prescribed another type of reflux meds in addition to what he takes because during the endoscopy, the doctor saw that his esophagus was red from the acid in his reflux. The new medicine is working well. And his stridor is mostly gone. I think over time we can see it was a successful surgery.
So that should about do it (!!!). Nothing like fitting a year of appointments into about three weeks. We are very blessed that Sebastian is so healthy. I am very thankful to my mom for coming with me to every appointment because they were very tough. I had to retell the story of Sebastian’s birth to all of them and some in more detail than other’s. I had to watch Sebastian go under general anesthetic AGAIN and if you have ever done that, it’s pretty emotional. I had to make the ultimate decisions to go through with the tests. I had to talk to doctors and insurance people for lengthy periods of time to make sure everything was taken care of.
The day before the last test and surgery (it was learned that day we needed it and scheduled immediately for the next day) I had one freak out on Ali over the phone because the weight of all of these appointments and decisions was heavy upon me and I felt like it didn’t really effect him at all because he couldn’t begin to imagine what is was like from dusty, hot, Cairo. We work through everything and come out stronger. The creamcicle shake my mom and Sebastian picked up for me while I was ‘working through’ my conversation with Ali certainly helped too.
I have returned.
I don’t think I could have anticipated how busy we would be during our last month in Michigan. The first month was balancing seeing family and friends with two therapies, HBOT and ABM. The second month saw us adding four different doctors and trips to the Children’s Hospital of Michigan in Detroit; twice for not so fun tests. All of this has obviously meant little to no time for reflection, but of course I want to retrace and remember some of our steps and adventures a little bit at a time. I can’t say I will be able to do it in any sort of order because if I tried I would just forget it and start with today.
Being back in Cairo has been challenging for me. And I think for Sebastian too as he has been fussier than usual. I have no doubt that jet lag has played a role in this but also a lack of family around is sure to have made an impact too. I wonder what Sebastian thinks. ‘Where has grandma gone?’ The day we left Michigan, he wouldn’t let her out if his sight. He knew something was going on and he wanted to spend as much time with her as possible. It was an exhausting day trying to fit everything into the three suitcases we were allowed. Repacking and weighing on a short nights’ sleep, well short week of sleep really. He spent the day hanging out with my mom, getting in his cuddles as much as he could before we were to walk through security at the airport. [flight story in another post, just to keep things short and organized!]
We are so happy to be reunited with Ali. It feels good to be a family again, all together in one happy home. Ali took some time off for our return so we were able to get back into family life in Maadi. This week has been our fist week on our own and we are back to the long days and nights while Ali works long hours. But the moments when he comes home in time for Sebastian’s bath, and the mornings we can all have breakfast together, make those long days worth it.
I miss my mom. I miss my family. I miss the new therapy friends we made in Michigan. And I know Sebastian does too. Sometimes he’s looking around and I know he’s wondering where everyone has gone and how is the house so different? It’s amazing to exist in two places at once, but only possible to physically be in one and even then to feel you are living two separate lives. Not everyone knows what this feels like. It’s strange, heartbreaking and blissful all at the same time. There is a teetering of back and forth, back and forth. And I do my best to live in the now. In this place. In this journey. Today.
We spend a lot of time in the car in Michigan. My mom lives in the country and there is no public transportation. We drive back and forth to HBOT and ABM. We visit family. We do some shopping. All of these things would have been impossible back in November when we were visiting for a few weeks. Every time we got into the car, Sebastian cried. He could not tolerate being in the car or the car seat. He would do the silent cry which involved holding his breath for a few seconds, lips turning purple. We did not make it out much during that time. Most of the time it was because it was just too much to put Sebastian in the car for an outing and there was also a lot of snow.
This trip is different. Very different. Sebastian is in a toddler, forward facing car seat. He has no problem being in the car. He only fusses if he is hungry and after HBOT we always have a snack bar. He even falls asleep sometimes! We listen to his music and look back from the front seat often, singing songs and he even plays with toys. Well, he is working on playing with the toys, he is now pulling them to his mouth easily, which is awesome.
Sebastian has had a bottom tooth coming in slowly and painfully the past two weeks. So there has been a lot of drool and chewing on everything. A couple days ago I looked back from the front passenger seat to see him chewing on the plastic harness clip on his car seat. When he noticed I was looking at him he stopped, looked up at me and smiled. When I looked away, he started chewing again. I told my mom what he was doing and she began watching him from the rear view mirror, as she was driving. I looked back again and he stopped to look up and flashed this mischievous grin. When I looked away he started chewing again. This time I looked from the corner of my eyes and saw him chewing and looking at me from the corner of his eyes, waiting for me to look back so that he would stop chewing. As though he was getting away with something he thought he wasn’t supposed to do. We did this a few times, him stopping and smiling and going back to chewing, while my mom and I were laughing. It was awesome.
It was in this moment I saw a toddler looking back at me, my little boy no longer a little baby. I love him so much and am so excited about all the amazing things he is doing.
Today has been a long, tough day. Not even just for the day that it is on the calendar; 13 years since Josh drowned. This photo was taken a couple weeks before that tragedy at a friends. It’s the most recent one we have of him. It makes me think of all the crunches he bragged about doing every morning and night to get his ‘rock hard abs’. Teenagers.
It’s a week of remembering for me. Yesterday was also the 6 year anniversary of Adam’s tragic death. Some of you know he was one of my closest friends whom I taught with in Bangkok. He made me laugh a lot. Just about every memory I have with him involved laughing and having a good time with life.
I remember the moment I learned about each death. I remember entering a stage of shock when Josh died but somehow still trying to hold the family together. I remember collapsing on the ground and curling into a ball on the floor, tears streaming down my cheeks, when I got the phone call about Adam.
I remember the phone calls I made beforehand to friends to ask for prayers that my brother would make it. I remember the phone calls I had to make to friends to tell them of Adam’s death.
I remember gathering photos for Josh’s photo board for his wake. Growing up over the years. Posing. Laughing. Playing. I remember watching the slide show during Adam’s memorial at school. Laughter. Memories. I saw my smile next to his on many of the slides.
I remember not painting anymore after Josh died, not for a long time. But I remember painting again in Bangkok. I remember Adam encouraging me to paint, just as Josh had always kept our younger brother, Jake, occupied so I could paint.
I remember talking to Adam about Josh and the loss that I had to accept when he died. I remember them both. I remember these moments so vividly as I think back on them. And I remember the loss of them from this world, but most of all, I remember their LIVES. And our lives together.
Sebastian and I made a picture for Ali for Father’s Day last weekend. [Sebastian grabbed onto the marker and held tight. He was more interested in getting it to his mouth that using it to scribble on the paper. So I held his hand with the marker standing and he moved it around. ] It was Father’s Day in America and since Sebastian and I will be in Michigan during the Australian Father’s Day, we decided to celebrate early. Ali was on the late shift which meant he wouldn’t be home before Sebastian went to bed, but he would be able to sleep in a little and enjoy breakfast with us, which was mighty nice.
Since Ali’s new bureau chief has arrived we haven’t seen much of him during the week and even some weekends he is called into work unplanned. Ah, the life of a journalist. During the week he gets home late most nights and Sebastian is already asleep; which can be any time between 7-9pm, depending on his afternoon nap. It doesn’t matter if Ali goes into work early or late, if there is news to be written, he’s writing it. I’m used to it now, but I still wish he could come home earlier. I know that a lot of dads work late, but sometimes it seems tougher since we are on our own here. At least in my mind.
Since he is working so much sometimes he struggles to balance everything. I do my best to help him out, but sometimes he forgets things, and I’m not always able to remind him. Sometimes even after he’s come home, he’s still working. Being a journalist is not a 9-5 job and that’s one of the reason’s he likes it so much. But he also likes to spend time with his family.
We have a trip to the beach planned in a few weeks time. Unfortunately a few days were eaten up by the need for him to cover a conference, but luckily for us it’s in Sharm so we can tag along and go from there on our mini-holiday. We wanted to have some quality time as a family before heading to Michigan. Sebastian and I will be there for two whole months. We will skip out on the extreme heat of a Cairo summer (it’s well over 100F today) and even miss Ramadan. Sebastian’s therapy center will be closed for August so we decided to take this opportunity to spend time with family and friends in Michigan AND dive into some alternative therapies. More on that to come.
As for now, I heard a rumor my husband was going to be home early today (maybe home by 6pm?), so I’d better go. Sebastian had a bit of trouble napping today and has fallen asleep late this afternoon and I need to get into the kitchen and make some food for him as well as our dinner.
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