Monday, November 29, 2010
Ever since we've been attending the Foundation for Blind Children's (FBC)infant program all we've heard about was how great Dr. Cassidy is and how he's done all these amazing things for all these children and for the foundation itself. So, naturally, I thought, "I HAVE to get my baby in to see this man!" And it was an easy decision to make seeing as how I wasn't real impressed with the eye dr. we'd been seeing anyway. Plus when I mentioned it to Dr. Wendy (our pediatrician) she almost peed her pants with excitement just at hearing his name...that was enough for me!
When I called to make the appointment, they were scheduling almost 6 weeks out! So, we've been looking forward to this appointment for a while now. I don't know what I was expecting, he was nice and all...I think all the hype got me over-excited to meet this man. I was under some impression that he looked like Santa Clause and that when he met my baby he'd scoop her up and kiss on her all the while talking about how beautiful she is and how all we have to do is _______ and her vision will be perfect. That didn't happen. He didn't even resemble Santa Clause a little bit. He wasn't even old.
What he did do was give us some hope.
Dr. Cassidy told us that Sadie does have some nearsightedness as well as astigmatism in both eyes (she gets that from her daddy and her grandpa, I think). He said she will need glasses down the road, but not yet. He wasn't concerned about her vision delaying her development severely at this point, but as she gets older it will be important for her to have those glasses. He also said that right now her prescription will probably change a lot between now and next time we see him, so there's no need to waste money on glasses right now. Once we see her prescription changes slowing down, then we'll talk. And that may be in the next 6-9 months. It's highly likely she'll have glasses by the time she's 2.
He also said she has some nerve damage in her left eye, but not really any to be too concerned about. When we brought up the possibility of there being a dominant eye, he said it could be the right eye just because it's probably stronger due to it not being damaged. But, while he doesn't recommend patching for therapy, he did recommend patching to see if we could determine a dominant eye. So, we got a sample patch and we'll start our next Sadie science experiment.
Another thing we talked about was that yes, she does have CVI (cortical visual impairment) and that her vision will continue to improve until she's 15, but the first 4-5 years are the most critical, and it's then that we'll see the most improvement. He said the best thing we can do is stimulate her with faces and big, exaggerated movement with our mouths and our voices. He said we need to protect her a little because with her visual impairment, noises will startle her more since she's not really ready for them.
And for those of you who have commented on her big eyes, you are correct. Her eyes are bigger than normal...but not by much. He said normal is 19.5mm and hers are 20-20.5mm. We kind of talked about that being because of her small head. But we never talked about the implications of this.
So, there you have it. Hope. And I'm a little excited for Sadie to wear glasses, mostly because she'll be able to see, but also because she'll be so cute!!
Saturday, November 27, 2010
He was born in the 30s in Dublin, Ireland, and just like the doctors told us, they told his mom that he would be mentally retarded, a vegetable. But, he showed them he was smart, he could write, he could think, he could paint, and eventually he could talk. And he did it all with his left foot...except for the talking, he did that with his mouth!!
I think what moved me the most about the movie/story, was his mother's love for him. He had about a million brothers and sisters, but he was never treated any differently. Even the neighborhood kids included him in their games and things, wheeling him around in a wheelbarrow before he had a wheelchair. But nobody loved him like his mother. When no one else believed in him, she did. And when his dad was laid off and they had no coal to heat the house and were eating porridge for every meal, she didn't dip into her savings she was setting aside for Christy's wheelchair.
And Christy loved her back, even before he could talk or communicate in any way, you could tell they had a special relationship. She told him when he was young that even if she couldn't understand him, God could, and she took him to church. She loved that boy unconditionally. When he had more to give, he gave back to his mom, to thank her for all that she gave him for so many years.
I know that as a mother, I am put into a special role. There is a bond between me and my children that is indescribable, that you can only understand if you've had children. But there's something even more special because my child is disabled, something too deep for words. She is my beautiful baby, the one I worked so hard for, and she is perfect to me the way she is. I know that we're gonna come up against hardships; unkind words, staring, questions, but that's only because other people don't know my baby like I do. And when she's 2 and probably not walking yet, that's okay, because she'll probably be able to do some form of a crawl or a roll, and that will be more than she can do now. And that will be awesome. Already, we look at what she can do and think she's awesome.
I hope that someday, when it's time to write Sadie's story, that she will remember me (and Brian) as supportive, loving, and always encouraging to her. I hope that we can be the kind of parents who push her to always do her best and everything that she's capable of...just like anyone would expect of their children without handicaps. And I hope that she becomes an independent person, capable of loving and living life to its fullest.
If you want to enjoy a very sweet movie (or maybe you're ambitious enough to get the book, I know I'll be finding it at the library soon!), I highly recommend "My Left Foot."
Wednesday, November 24, 2010
I've been reading a lot lately on Facebook about a lot of people being thankful. It's been really neat to read, and I'm sure it's a good exercise in grattitude to give thanks everyday(publicly) for a month. I haven't done that. And it's not that I'm not thankful, I think it's more that I'm TOO thankful that I have a hard time putting it into words.
Sunday, November 21, 2010
When she startles she looks a little like a tiny symphony conductor blasting her arms up in the air as a piece of music hits an apex of sound. Once those arms menacingly arise, they quiver as though encouraging the orchestra to keep the time and pace of the musical score. I, in awe filled terror last night, scurried away as quickly as my tip toed steps would allow.
I told my wife that I was statuesque, resting for a solid 7 seconds staring and her with the only sound emanating from my body being love and breath. Christie replied, "She senses you." "What do you mean?" "She's aware in ways we aren't."
The other exciting event of the day was our donation. We had some eggplant bushes that had taken over the garden. They were blocking sunlight form our carrots and leaks and had to go. So I pulled them up. Sadly, my wife and daughter decided they didn't like Eggplant. So I cut every edible eggplant off of the bush, put the bushes into a tumble-composter. I easily had 40 pounds of eggplant. They filled up 3 giant plastic bags we had.
I took them to a local food bank at a Church, to which the lady asked: "why the donation?"
"We can't eat all of these."
"My family can," she quipped with a grin.
Delighted I left her with lots of eggplants she can use that we can't. I hope tomorrow night at dinner, someone somewhere is eating eggplant that we grew in our garden.
Thursday, November 18, 2010
I was shocked to hear the news this morning. They don't know what happened, so they're calling it SIDS. She stopped breathing in her crib, and when she was found it was too late. I guess CPR was performed and paramedics were called, but it was all too late. Wow. That poor sweet family, how my heart goes out to them right now.
It really brought me back to the day we were ready to say goodbye to Sadie. That was hard, and we cried, but she was 5 days old and we hadn't really bonded with her the way these parents had after knowing Savannah for 7 months. I can't even imagine what they are feeling right now. My heart hurts for them.
But it got me thinking about death.
Not too long ao, I got to talk to another special needs mom who comes to The Foundation for Blind Children on Friday mornings. She never stays for the parent meeting, so I don't get many chances to talk to her, but her baby looks a lot like Sadie, so one day I started asking questions. I learned that this is her second baby, her first had the same special needs. The doctors don't know what it is, but they're pretty sure it's genetic. I asked about her son, she said he died last April. And I started wondering what it must feel like to have a baby and be faced daily with the reality that she may not make it any longer than her brother, who was 5 years old. Would that wrench my heart to bury both my children? She is amazingly strong, I think that reality might send me over the edge to the loony bin.
Both of these stories got me thinking about our own situation. We are so lucky that we didn't have to say goodbye to our baby. She is so cute and, for as much grief she causes, she provides us with even more joy. But it never crossed my mind until hearing these 2 stories that we could lose Sadie someday. Is that weird to think about? I mean, nothing is guaranteed in life, and really any of us could lose a child, so why does this bother me so much?
I guess it's because there is still so much we don't know about Sadie. She'll be 10 months old tomorrow and I feel like I still have as many questions as I did when she was 10 days. All I can do is enjoy every minute, every day that I get to see her little smile and squeeze her chubby little thighs, because we don't know the future. But if the future does hold the unthinkable, I want to be able to look back and remember Sadie with a smile, knowing I loved her with all my heart and gave her everything I've got.
So, please pray for baby Savannah's family. They will be coming back to AZ to hold a memorial service with friends and family. We hope to attend. I wish there was more we could do.
Sunday, November 14, 2010
I had a perfectly normal pregnancy, my birth was even pretty average...although long. But when my baby, Sadie, was born, she wasn't breathing. There was meconium covering her body and in her nail beds, it had obviously been there a long time. She had been sick, and we didn't know it.
She was immediately rushed to the hospital (we had a home birth), where an experienced doctor quickly discovered signs of brain damage. Sadie was transferred then to Phoenix Children's Hospital's NICU, one of only two Neuro-NICUs in the country. There, Sadie was put on brain cooling.
When babies are born and not breathing, brain damage can set in pretty quickly. But, if their body temperature can be cooled down to a hypothermic state, they've found that they can stop the damage from continuing, and even reverse it. But when Sadie wasn't showing improvement the way other babies have, the doctors did some more investigating.
We were only in the NICU a week, but since we've been home, we've come up against a number of other obstacles. We fought to get into the PEMU (Pediatric Epilepsy Monitoring Unit) at Phoenix Children's Hospital because we believed Sadie was NOT having seizures, and refused to medicate our baby unneccessarily. We had an MRI when Sadie was 6 months old. And we visit a special needs clinic at the hospital where we see Dr. Wendy, Sadie's pediatrician. We've also needed and used the Emergency Room there. Phoenix Children's Hospital is an amazing place, full of wonderful and caring people.
You can donate by clicking here.
Saturday, November 13, 2010
Dessert is definitely something we go without when dining out, but they allowed us to order one for the three of us to split. We had a hard time deciding because my mom doesn't eat fruit after noon, and I don't do dairy...we finally settled on the flourless chocolate cake, and got the ice cream on the side. It was the size of a ramikin, but just enough for the 3 of us to share. It was warm and gooey and rich and chocolatey, seriously the best thing I'd eaten all week...and it was vegan.
Overall we really joined our experience, the service was friendly, the food was fantastic, and the atmosphere was comfortable (we ate outside under the heatlamps, it was pretty cozy). I would recommend True Food Kitchen if you have one near you, just for the experience of foods that truly are different.
Sunday, November 7, 2010
We started our night driving to a very wonderful steakhouse situated on the southwest corner of Scottsdale Fashion Square. If you're unfamiliar with the reputation of Scottsdale, just know that having the term "Scottsdale" in one's mailing address raises one's house value 100k just based on status. Being near the fabled Fashion Square only made this location that much more posh. We do not live near Scottsdale.
We avoided the Valet and walked in. We needed access to our car in case of Sadie melt down and waiting for Jeeves to return with our 10 year old 175,000 mile car is not an option. We entered the main area complete with giant ice carvings, ladies in black dresses wishing us to "enjoy yourselves!" and a troika of dazzle. We entered a courtyard that was jam packed with Tolstoy's with a smattering of Dostoevsky's parading blind children around.
The event was geared towards the wealthy. These people put up a certain amount of money to show up and eat. They were then allowed to bid on various items that have been put up for charity. There was a day at Bondurant Driving School, various weekends at Pine Top, and trip to Italy where you can be toured around with a zany tall Italian with poffy hair, a regal accent and sense of Charity. Or these guests could simply donate to the cause.
Our purpose there, along with the rest of the Dostoevsky's, was to show who the foundation helps and allow them to actually interact with beneficiaries. In a way I felt as though my family was paraded around where these Tolstoy's could dote and fawn and pump money into a cause to make them feel good about themselves. Then again, I'm grateful that they are generous enough to donate money to the foundation which gives us so much great assistance and support.
We entered the throng of tightly packed people following a small trail hoping to find someone we knew. We were immediately cornered by what we assumed was the owner of Barrett-Jackson and his group of lovely ladies. The women were so nice. They asked about Sadie and why she was a part of FBC. They marveled at her blue eyes and red hair. Commented on her calm disposition, and eventually asked to hold her.
This lady was currently (well not just at that moment but you get the idea) attempting to become pregnant herself and loved Sadie. The red sparkly dress was something Sadie found mesmerising.
Sadie was then passed to Muffy. (real name: Audra. Her grandma called her Muffin and apparently throughout her life it was reduced to Muffy. She went out of her way to clarify that she had never been on the pole. Well, okay then. I did not respond: having to clarify one's name makes me think that one's name may not be fitting. We spent an exorbitant amount of time discussing them name throughout the night. I digress.) Muffy enjoyed Sadie time too.
This continued for a while as we wound throughout the crowd. We met some people with special needs children of their own, and others who I assume where there solely as this happened to be the fun socialite event of the weekend. At one point, Christie asked if there was anyone famous there. I suppose, depending on interest, one could say the Barrett-Jackson gentleman, however that paled in comparison to the below gentleman.
Dan Haren is a very good pitcher. He is nearly a 5 WAR player the last few years - which for the uninitiated, is very, very, very good number (Three verys should help convey the importance of the 5). I saw him immediately and made eye contact, smiled and he walked on quickly, I imagine in his mind thinking, "Don't ask me for an autograph." A moment later he passed us again, we asked for a quick picture, thanked him, and away he went. I hope to make large contributions.
Shortly thereafter Sadie melted down into a hungry, sweaty, hot, overstimulated, mess. We left the Tolstoy's and drove home to a nice scream concert from Sadie. We hope that in some small way we helped to inspire some people to donate a little bit more to the foundation. Even though the entire situation was awkward (the wine people were drinking was of the 4 dollar bottle variety) it was for a cause we care about.
You can donate to a great cause here: http://www.firstgiving.com/sadiebeck
Saturday, November 6, 2010
I was a little nervous about going to this event. I was afraid it would bring back some tough memories...and it did. But the idea of showing Sadie off to a bunch of people who thought she was going to die was too hard to pass up! What I didn't expect to be so hard was seeing all the other families, families with tiny babies that are just starting out their journey. They are so thrilled and overjoyed with their little babies and excited they're doing so well...but behind those smiles there is a fear of the unknown, a fear I am familiar enough with that I can recognize it a mile away.
We got to see Dr. Carballo, the neonatologist who heads up the neuro-NICU. (I don't know why we don't have any pictures with her! Sad.) She is a wonderful woman who hugged I think, every single person who walked in that door. Even though she knows that this brain cooling saves these babies, she is still so genuinely happy for every family that she has helped. I remember her crying with us in the NICU, over the bad and the good. I remember feeling how much she really cared about us and about Sadie. What a hard and wonderful job she has.
We also got to visit with Dr. Blackham, she is the developmental psychologist that tracks Sadie's progress developmentally. She is also a wonderfully sweet woman. She is addicted to coffee and walks around in the sock feet, and I love her. She held Sadie a little and loved on her some. It was good to see her.
And we got to see Amy. We dubbed Amy the Neuro-NICU ambassador. She was as busy as a bee in that place walking around meeting people, swapping stories, and introducing people to others. At one point she was getting everyone's email/facebook information to start a group! She is so great.
When Sadie became an official graduate of the Neuro-NICU, she was given a little beanie baby of a polar bear wearing a shirt that says "NICU graduate." It's cute, the officially mascot of the Neuro-NICU is a polar bear...you know, because he's "cool." So there was a person there today dressed up like a polar bear. Only he looked more like a Yeti. Decide for yourself! Either way, he was a little creepy.
All in all it was a good morning. It was good to be there, I think it's an important step in the healing process (sorta like returning to Auschwitz...okay well maybe not that dramatic, but you get the idea!). Sadie did really well and kept her cool and of course she showed off her cute self like she does so well. It'll be good to go back next year and see how far everyone has come.
Wednesday, November 3, 2010
It's hard to have Brian gone for just ONE night, let alone 3, because Sadie is a LOT of work. Like today. She cried all day. From about 5:30 this morning until she finally crashed around 3:00 this afternoon. Cry cry cry. Ane me without a break, because I'm all alone with my own cute little screamtastic child, whom I love and I feel bad for because those teeth are really ouchie.
Anyway, since Brian and I can't live without each other, we end up texting pretty much all day and night when he's out of town. Good thing we have unlimited texting on our phones. But the best is when Brian's had a little to drink. He gets all mushy and sweet and I get texts like these: (edited of course for spelling errors and dumbness)
"You are such a good mom. I wish people understood the commitment you have to Sadie. I love you so much for that. I think as our relationship changes and mutates that's the most admirable aspect of everything. I don't care about a lot, but I care about your commitment to Sadie. I love you more because you take care of her. It is the best thing I've ever experienced and I'm so proud of you. I'm not even mildly interested in another woman. I know they cannot compare to your depth of love and compassion. I'm so happyto be with you."
"Sadie is deep s*#t. People have no idea. We do. I cherish that more than anything. If I believed in fate, I'd think we were set up for her. It just fits in."
"We're so unique to have her. Our experience is different than any other's. I love her more than I'm sure most fathers love their daughters."
Now, I think every father thinks he loves his daughter more than any other father, but it's still sweet that he thinks his daddy-love is strongest of all.
Aren't I married to a good man?