Monday, November 28, 2011

30 Days of Thanksgiving

As you can imagine, life has been pretty busy lately around the Beck household. We bought a house (which requires inspections and paperwork and notarizing and lots of emails back and forth with the realtor), which leads to lots of packing into boxes every one of our earthly possessions as we prepare to move it all. And we hosted Thanksgiving dinner at our house, which was a lot of work...but way easier than taking Sadie to someone else's house. Then there is just the daily stuff that we get caught up in - working, eating, taking care of our child - all of this, as you can imagine, leaves little time for blog posts. And before you know it, it's been 2 weeks and I've said NOTHING!

I started this 30 days of Thanksgiving challenge with good intentions, but probably unrealistic expectations. The goal was to post on Facebook everyday someone that I'm thankful for. I wanted to take it a step further and also write a blog post each day. I literally blinked, and the month was over. However, I DID keep up with my thanksgiving on here's the rest of my list!

14. I am thankful for my health. I posted this article about the way turkeys are raised for your Thanksgiving table. Our family recently became vegetarian, and considering the way our country mass produces meat, I believe we made the right decision. I am not trying to convince anyone to not eat meat...just be aware of what you're putting in your body!

15. I am thankful for my education. There was recently a story that hit the news about a teacher caught on tape (a kid was actually wired) bullying a special needs student. It was horrible. Unfortunately, in my profession, it's rarely that the GOOD teachers make the news. But I consider myself a good teacher, and I know a lot of other good teachers. So, I am thankful that even though I don't make the news for being good at what I do, that I have the education to do it.

16. I am thankful for my parents. My uncle died this month after a long battle with cancer. He fought hard. But it made me realize that my parents aren't young. I have a special relationship with both of my parents, in very different ways. I love them both so much and I can't imagine losing them. My heart hurts for my cousins, especially as they face the holiday season without their dad.

17. I am thankful for my baking/cooking skills. I made an awesome vegetarian Thanksgiving menu! It was a lot of work, but EVERYBODY loved it!

18. I am thankful that we have the Chillout Chair. Sometimes Sadie just needs to rock and rock and rock...and rock. I am glad we have something that can accommodate her (and keep her quiet!). Seriously, I don't know what we'd do if we didn't have this thing. I would go crazy from all the screaming and crying.

19. I am thankful for the Internet. Seriously, what an amazing invention, huh? I am able to keep in touch with people I wouldn't otherwise be in touch with through Facebook! I can watch TV shows and sports! And I can teach in a virtual classroom!! The internet is sooooo cool. And it just seems to be getting better all the time (as hard as that is to believe).

20. I am thankful for my brother. We are not only far apart in age, but we have very different personalities. Everybody likes Marcus, he's easy-going and funny (whereas I can tend to be bossy and uptight), growing up that drove me crazy. Now we're both adults and we both have little kiddos, and we're finally in a place in both our lives where we're equal. And we're still really different, but we get along much better. He is a rapper. He lives in Oregon and tours throughout the western US often. Every once in a while he comes through Phoenix and we get to visit. It was nice to have him over for dinner and catch up on his life.

21. I am thankful for 2-year-old tantrums. Okay, that sounds weird, but it's true. Anything that Sadie does that is somewhat normal we rejoice over. She is starting to really "know" what she wants and get mad if things don't go her way. It's annoying, sure. But, the fact that she is even aware enough to have her own opinions is so amazing.

22. I am thankful that Thanksgiving is about family, not about Turkey. When I posted my Thanksgiving menu on Facebook, I had a bunch of comments about how people can't imagine Thanksgiving without turkey and how it was so horrible that we wouldn't be experiencing the best thing about Thanksgiving. What.ever. I guess people don't realize A. you can cook a turkey anytime of the year, and B. Thanksgiving isn't about having turkey, it's about having family and being thankful for those in your life.

23. I am so thankful that our family loves Sadie so much. Sadie can be really high maintenance (I know, shocking) and sometimes I just look forward to my family coming over and loving on her. Seriously, I don't even mind that they walk in the door and barely say hi to me, but go straight over to doting on my child, because she loves the attention...and that's attention that I don't have to be giving her. Some people are intimidated by Sadie's special needs, so they kind of shy away, but not my family! If they don't know, they ask. If I need help, they want to know how they can help. If she's not happy, they are determined to do whatever they need to to make her happy...even rock and rock and rock and rock. And rock.

24. On Thanksgiving I was thankful for all my friends on Facebook. Seriously, I learn more from Facebook than I'd ever be able to find on the internet myself or read in the newspaper or listen to on NPR. Not to mention all the things I learn that are NOT in the news... like who is pregnant and who already has 5 kids and what funny thing your kid said today or where you're traveling on vacation this year?! Facebook is so awesome! Oh, and I posted this video as an example of all the cool stuff I experience through Facebook.

25. Usually on the day after Thanksgiving I spend the day getting out the Christmas tree (since we live in AZ, our Christmas tree is in a box) and decorating the house. This year, I started packing. I got out all my classroom teacher stuff and started purging. I mean, it's been almost 2 years since I've been in a classroom, and as you can imagine, the things I use for my job now are way different than when I was in a classroom! So, a lot of it I don't need. But there were also a lot of memories in that stuff, and I started realizing how lucky I was to start out teaching where I did. I worked with some good teachers who really taught me a lot, and I am so thankful for that experience.

26. You may not know, but I'm desperate for friends. Probably 60% of the reason I wanted to get a job was to have friends (I'm lucky I really like the people I work with!). It's hard when you're a mommy who stays home all day, especially when you're a special needs mommy. But I made a new friend recently, her name is Kristi. She has a special needs kiddo (who's totally different than Sadie) who's about a month older than Sadie and she came over to visit and hang out today. We didn't do anything special or especially fun, but it was good to see her. I am so thankful for new friends.

27. I am thankful for sleeping in Sunday mornings and family walks together. Recently we put Sadie on a very rigid schedule. She has a wake up time and she has a lights out time, and that means someone has to always get up at 6:50 with her. On weekdays it's not a big deal because I get up early and do work while the house is still peaceful, but on the weekends, sometimes I just want to sleep in. Sundays are the day that Brian gets up with her, and even if I don't sleep, it just feels nice to lay in bed and not have to get up. Then usually around 9:00, after we've eaten breakfast, and before football starts, we go for a walk together as a family. I love winter weather so we can do this. It's just a good time together...and Sadie loves being outside!

28. Today we signed papers on our house, and I am so thankful that it's over. No more stressing out that something is going to go wrong and we're going to lose the deal. And we had a to drive kind of far to the Title Company's office. Sadie did awesome in the car. She did awesome at the office. She was so good on the way home that we were actually able to run an extra errand! It was a good day.

29. I am thankful that I feel well. The night before, I had a really bad headache. I took some Tylenol with Codeine and I think that is the only reason I didn't throw up. But for the ENTIRE day today I felt drowsy. I wasn't tired, but I couldn't keep my eyes open! Either way, I was just glad the headache was gone.

30. The last day of thankfulness I am thankful for God's mercies, and that they're new every morning. Some days don't feel like they'll ever end. Some days are so hard that I want to wake up as somebody else. It's on these days that I can go to sleep knowing that tomorrow is a new day and God's mercies will be there waiting for me...and no matter how hard tomorrow is, there will still be another day.

So there are my 30 days of Thanksgiving. I hope you enjoyed reading them. I hope you found yourself giving thanks throughout the month of November. And I hope that even though Thanksgiving/November is over, we can all still find ourselves giving thanks on a regular basis and remembering that we have a lot to be thankful for in our lives.

Sunday, November 13, 2011

Thanksgiving Day 13

This morning I am thankful for the weather. As you can imagine, it doesn't rain very often here in Phoenix. But this morning I woke up to the sound of dripping and when I opened the blinds, it didn't really make it any lighter, and I smiled a big huge smile. I love this weather. It reminds me of home.

The University of Oregon didn't choose the ducks to be their mascot because it's a cute feathery's duck weather. And I am a duck at heart. I remember waiting for my ride before school in the morning sitting on the heater vent and eating my cereal. And sleeping with lots of heavy blankets on the bed. It's those mornings that you don't want to leave the comfy coziness of that bed. I love the cold weather. I love to wear sweaters and hats and coats. I love corduroy pants (for some reason I associate them with winter) and I love warm socks and shoes.

So why do I live in Arizona???

Because my husband doesn't love cold weather. All he did this morning was complain about how he didn't want to get out of bed, about how it was wet outside so we couldn't go for a walk (we did anyway), and about how much he missed summer. He's silly.

And I'd rather be hot and sweaty because it's 110 degrees outside than live with someone who just complains all the time.

Saturday, November 12, 2011

Thanksgiving Day 12

Yesterday I totally missed a Thanksgiving opportunity. It was Veteran's Day and I should have been thankful for all those who have fought and are still fighting for our country. But I was blinded by my own selfish good fortune.

The truth is, I don't have a lot of confidence or belief in our government. I think they are corrupt and beyond repair and they only dig themselves deeper and deeper into the pile of poo they are already buried in each time we elect a new President.

But that doesn't mean the soldiers who are serving at home and in various countries around the world aren't good people. They are doing what they feel is right and they are often doing it at the expense of their family, who are at home without them, or forced to move every few months to a new place.

So, I am thankful for all those who are serving in the military. I am thankful for their sacrifice and their dedication. I am thankful for their strength and willingness to sacrifice. I am also thankful for the families of those in active duty. These wives are are raising children mostly by themselves, packing up their children every few months and moving somewhere else, or even wondering if their husband is every going to come home...alive.

Thank you for all you do.

Friday, November 11, 2011

Thanksgiving Day 11

This week we signed the short sale acceptance papers for the house we want to buy. And I am so thankful that it's finally happening, because it seems like there are so many things that can go wrong when buying a house...especially when it's a short sale.

When we saw this house, it wasn't even on the market. We pushed our way into this house, not once, but twice. The tenant was confused and a little creeped out, and when Brian went without me she reluctantly let him video with his phone, but she didn't want us to take pictures when we came back. I've been in this house once, Brian's been there twice. That's it.

The reason this house wasn't on the market was because someone else had made an offer. But it wasn't moving very quickly, and the selling agent didn't seem very competent, so we didn't have a lot of hope. And Brian convinced me to throw all our apples into this one basket, and that scared me because I didn't have a lot of hope. Nobody did.

But all of the sudden the other offer fell through, our offer was accepted and things moved along quickly.

Now we have a close date of Nov 23.

And I am so thankful that we have been blessed with this house. It's big enough to grow into. It doesn't need a ton of repairs. And it has no pool (which Brian is really excited about). I'm mostly excited that there are enough rooms for me to have my own office/craft room.

Let me repeat that; my OWN office/craft room!

We will get to walk through again with the inspector on Monday, and I will get to take pictures. We have started thinking about furniture and packing and hiring movers. Hopefully now we can get moved in and settled so that we can start the new year with a new life in our dream home.

Thursday, November 10, 2011

Thanksgiving Day 10

I'm thankful for what Sadie has taught me about myself in the last 2 years...even before she was born. All my life I've wanted to be something I'm not...athletic, artistic, skinny, rich, organized, etc. and I've put various plans in place to become these things. But really, none of these things are me. Instead I'm high-strung, impetuous, physically weak, and messy. And I'm finally able to accept that.

I'm realizing that I have to be a mom now. And not just a mom, but a mom of a child with special needs. It's different than being a mom of a typical kid. Not better, not worse, just different.

Lately, I've been struggling with the fact that I don't get a day off. Ever. Sadie has to start her day at 7:00am, and there are no "weekends". Someone has to get her up and get her medicines and start her feeding schedule...and that's usually me. It doesn't matter if I'm cozy under my covers or need another hour of sleep. I don't get a day off. It's not about me anymore.

Someone has to take care of Sadie all day long too. She cannot feed herself. She cannot play by herself. I can't just turn on the TV and get an uninterrupted hour to do the dishes or fold the laundry. She doesn't nap (unless I'm holding her or laying down with her). And often she needs to be rocking in her chillout chair, which requires physical effort and attention. All of these things require me to split my attention from whatever else I'm doing. I don't get to just do whatever I want anymore.

I had been feeling sorry for myself. I started thinking this was too hard, that I was somehow cursed with this over-needy child. I felt like nobody else understood me or had ever gone through this, so nobody understands. Then I found a couple of different mommy-blog posts that just randomly showed up on facebook (God knows what we need to hear, right?) that were about the struggle that it is when you have kids and you go through this identity crisis as you transition from woman to mom.

WHAT??? This is normal???

Everybody goes through this identity crisis when they have kids, apparently. It's about leaving your old self (no matter how much you tried to improve that self all those years). It's about shedding that cocoon to become the beautiful butterfly that is called "mom." It's a time of rediscovery...and it can be painful. It's a struggle, but struggle makes you stronger, right?

All of these other things all of the sudden don't matter as much. I've left them behind with my chrysalis, and I've emerged even more beautiful than I was before. Still not athletic as I'd like to be, still not as artistic as I wish, still stressed out, still messy, but now I'm mom.

I'm Sadie's mom.

And that's who I want to be.

Wednesday, November 9, 2011

Thanksgiving Day 9

When we were in the NICU with Sadie, even though we had bigger things to worry about, how much all this was going to cost was constantly in the backs of our minds. I hated the idea of getting this huge bill from the hospital, but we didn't even get to keep our child! That just didn't seem fair. We were amazed when we got the bill and it was $150!! Insurance paid just about everything (and then the hospital adjusted accordingly)!

The next couple of months were like a lesson in insurance 101. Really, they should have someone come explain to you how all this works when you're in the hospital with your child. I mean, they have the chaplain come, the social worker come, the lady from hospice come...why not an insurance counselor? Anyway, I had to learn really quickly what an EOB (explanation of benefits) and what they mean (nothing). But I think the hardest thing for me was figuring out who was Sadie's primary insurance and who was secondary...apparently since Brian's birthday comes first in the year (even though I was born before him), he's primary. So confusing. Luckily, my mom worked in insurance for a lot of years, so she was a good resource!

But I got a lot of it figured out. I've learned what questions to ask, what to argue about, and what to just not pay.

Now Sadie has something called Long Term Care. This is basically a branch of our state assisted insurance program that covers everything our private insurance doesn't because they recognize that Sadie's condition is long term and that $30 copays add up over time and that she's going to need extra equipment! The greatest thing about Long Term Care though is that I no longer have to worry. I never get a bill, and if I do, I know I just need to make a phone call and I won't have to pay for it. Long Term Care pays for Sadie's feeding materials (ie. formula, tubes, buttons, syringes, bags for the pump, thickener, etc) and they send someone to our house with a delivery each month!! They paid for our chillout chair. And they provide the respite care we get.

Finally, Sadie was enrolled in something called Child Rehab Services (CRS). I really don't understand CRS. On one hand it seems like a net to catch families who don't know how to navigate the system or properly care for their child. But on the other hand it seems like another branch of state provided insurance/services that Sadie gets for free. We visited the wheelchair clinic through CRS, and even though the wheelchair (which is around $3000) has to be submitted to our private insurance for approval (and even then they'll only pay 80% probably), they didn't wait to order it because no matter what our private insurance will or will not pay, CRS will cover the rest. We WILL get a wheelchair and we WILL get it for free. So nice.

So, today I am thankful for insurance and that we have such amazing benefits both privately and through the state. I don't know what we'd do without it... anything relating to special needs always costs 3 times more than it needs to!!

Now if we could only find a way to speed up the process!!

Thanksgiving Day 8

I have the best job in the world. There are not many part time teaching jobs around. Usually they want you to be in the classroom all day, every day of the week. But I work at an online school, and we don't teach in a classroom. So, working part time just means I am given fewer classes/students as my responsibility.

Today I am thankful for my job. It allows me to stay home and be a mom, but I am still able to do what I love...teach. And working part time makes it even better because now I feel like I have time for Sadie's therapies and doctor appointments. My schedule is truly flexible.

I also work with a great group of people. Sometimes it's sad that we don't get to see each other everyday, but honestly, I think if we did we wouldn't get any work done!! Every other month, we get together for professional development. I look forward to these days (even though we sit in a meeting all day) because I get to be around adults, I get to laugh with my friends, and I get to see their smiling faces.

Many of the people I work with live on the other side of town, closer to where we are moving. I hope that after we move I'll be able to see them more. In fact, it might even be fun to all get together and work in the same room once in a while...but I'm not sure we'd actually get any work done.

Working in an online school is really a blessing and I am so lucky to have this job.

Monday, November 7, 2011

Thanksgiving Day 7

Sadie's been having a really really really hard time teething these past few days. I'm sad for her. We keep thinking since it's so bad, we must be nearing the end. I mean, it's been bad the entire time, but it's been especially bad these last few days. She's in so much pain and she just can't get any relief.

Yesterday afternoon she fell asleep while Brian was holding her. Usually naps like this last 3-17 minutes. This one lasted for more than 30 before Brian decided he had to go to the bathroom too badly to continue sitting there. So, we woke her up. That's not a bad thing. She needed a clean diaper and to eat dinner and stuff. But once her diaper was changed, we set her in her chillout chair and the next time I looked at her, she was back asleep!!!

You have to understand that my child doesn't just fall asleep when she's tired. She's never been that kid who will sleep in the car, or close her eyes in the stroller, there usually has to be active putting-her-to-sleep. Sometimes that's rocking in the chillout chair, sometimes that's holding her and giving her the pacifier (which you have to hold in her mouth because she has a weak suck), and sometimes it means laying down with her (and holding the paci in her mouth) in bed until she's out. She never just falls asleep.

The other thing is that her ears are so super-sonic that the smallest noise or motion will wake her up. If she falls asleep while you're holding her, a deep breath might wake her up, or moving your leg. In her room, if one of us lays down with her at night, getting out of the bed without waking her is the hardest part. But last night, she sat in that chair for 3 hours while we talked, turned on a football game, cooked dinner, ate dinner, and did the dishes...and we purposefully were NOT quiet about any of that. She hardly stirred. She was so tired that I carried her into her room and, had I not had to change her diaper, she wouldn't have even woken up.

But she was sure wide awake this morning at 3:00am. And her teeth hurt.

Today I'm thankful for her feeding tube. If we didn't have that thing, last night would have been screamy and sad. But with the tube, we were able to hook her up, give her some formula, give her some water, GIVE HER HER MEDICINES, all while she sat hunched over in her chillout chair, dead asleep. And today, with her mouth so painful, she wouldn't eat. I didn't even try, there was too much screaming and I was too tired. I just used the tube.

Sometimes it feels so sad that she gets a lot of her nutrition through a tube, but on days like today, and I'm sure there will be days in the future, I am glad we have it so she can not only get the sleep she needs, but she can get the food she needs...and she can grow up to be big and strong!!

Sunday, November 6, 2011

Thanksgiving Day 6

Today I'm thankful for where I live.

We usually go on vacation in the summer (because I'm a teacher) and whenever we meet strangers and tell them where we're from, it's inevitable that they say, "wow, how hot is it there now?" Sometimes it's kind of fun to shock them and tell them that it was 116 the day we left. But the conversation always comes back to that it's beautiful in the winter.

The weather is forecast to be in the 60s for the next few days. It's beautiful. And it's November.

Arizona has it's quirks. I mean, motorcycles with no helmets??? Sheriff Joe Arpaio and his tent city??? Immigration policy??? Every now and then I even see someone on a horse riding along side the street. This place really is the wild wild west.

But it's beautiful this time of year. And I'm thankful that I get to enjoy it.

Saturday, November 5, 2011

Thanksgiving Day 5

If you're like most mommies, you do everything...even if you have another full/part time job and also contribute to the household income. And if you're lucky, like I am, you have an amazing husband who helps out a lot.

I don't think Brian was planning to do this much work when I got pregnant and we started planning to have a baby. I'm not sure I was either. But things don't always go the way you expected, and in the NICU, Brian really stepped up. I was a wreck that week; I was physically tired from having a baby, I was emotionally tired from being told my baby is going to die, I was tired of crying, I was tired of imagining my future, I was discouraged, I was disappointed, and I was scared. But when I couldn't be out with Sadie because my body hurt and I had to lie down, Brian was with her. And when I wanted to give up, he held me strong and suggested I try this or just go one more day of that. And it's because of him that I have been strong enough these last 2 years to deal with this kind of lifestyle.

For the first 8 months of Sadie's life, I don't think I put her down. I held her all day, she nursed in my arms to nap, she slept with me at night, we were connected, and if I put her down (or in the car seat) there was screaming. She wanted to be held all.the.time. But I desperately needed a break. And that's when Daddy stepped in. Brian recognized that I needed a break, so every Saturday he started kicking me out of the house. I would run errands, go grocery shopping, sometimes just sit on the floor in the library (where it's quiet) and look at books, it didn't matter, it was a break. (I think one time I sat in the parking lot at the post office and just talked on the phone!)

In those days I couldn't be gone long because Sadie was nursing, and she would never take a bottle, so I could only leave for a couple of hours. But these days, I have more freedom to be gone longer. And even though Sadie is probably more work these days when I'm gone, Brian can handle it.

Everyday I write out a feeding schedule for Sadie according to what we're doing that day. Then I add up all the ounces and make sure she's getting enough liquid. I'm pretty obsessive about it. Then we have our specific routines, like in the mornings I get her up at 7:00 whether she's awake or not. You might think I'm crazy, but when she gets up early, she goes to sleep early. And I really need her to be up and "eating" for 12 hours in order to get enough liquid in her to keep her hydrated! She gets medicine @ 7:00 and her tube feed @ 7:30, then she watches Sesame Street and when it's over she eats food by mouth. Feeding Sadie by mouth is not easy. She doesn't swallow really well, she spits a lot of it out, she gags, and sometimes she sneezes and food goes EVERYWHERE. It can be very frustrating and Brian doesn't like to do it. Plus she doesn't know how to tell you when she's full, so if you try to get more in there than she can take, she'll throw it all up.

But today, I wanted to sleep in. And Brian recognized that I needed to, so he got up at 7:00 on his Saturday (mind you, on week days, he goes to bed at 10:00 and gets up at 7:30, he really likes to sleep) and got Sadie started. He gave her her medicines, gave her her morning tube feed, got Sesame Street started, and even made me some tea. When I got up, there was no stress, because Brian had it handled and stepped right in! It was a great way to start the day!

I am so thankful for Brian because when I need to be in two places at once (ie. making dinner for us and feeding Sadie by mouth) Brian is willing and able to step in and help me out. He is selfless. He understands that I am only one person. And he gets how exhausting it can be to take care of Sadie all day (because he's done it!) I am thankful that he loves Sadie and me enough to try to feed her and bathe her and put her to bed. He wants to give me breaks, and he wants to help out with Sadie (even if he hates changing diapers) and he wants us to be a parenting team. I'm still Mommy, and I still do most of it...but it's so nice to have a Daddy that I can rely on if/when I need to.

Friday, November 4, 2011

Thanksgiving Day 4

Last night, Brian gave me a scare. He called me from El Paso to tell me that he would get a call today letting him know how a restructuring in the company would effect his position. He was told that everyone would have a job, but some may be demoted or relocated, and some positions may have different responsibilities than they did before. He was worried that he'd be asked to relocate to Las Vegas, because there are 5 or 6 people that are here in Phoenix... only 1 person works in Las Vegas. All evening we texted back and forth fretting about what kind of news he was going to get today, and it came down to me saying that if he was asked to work in Las Vegas, he'd have to commute. I can't leave Phoenix, not now, not after I've worked so hard to establish all these fantastic resources here for Sadie (and me) and our family.

To start with, we have an AWESOME pediatrician. We attended a conference at Phoenix Children's Hospital a couple of weeks ago, specifically about cerebral palsy, and our pediatrician (Dr. Wendy) spoke about primary care. Her focus was on coordination of care, like being at the head of everything and managing all the appointments with specialists, prescriptions that are written, and changes that are made in the management of care. When the question and answer portion of the morning came, people raised their hands and asked her, "how do we get our pediatrician to do that???" I didn't realize that other doctors DON'T do that. We've always had Wendy and Wendy's always been our contact person for everything. I can email Wendy anytime of day and she is always good about getting back to me within hours...even if it's a Sunday or she's on vacation. When I needed to change something for Sadie regarding GI, I contacted Wendy because contacting the GI doctor would mean leaving a message for the nurse who then would leave a message for the doctor and it could be an entire day before the nurse got back to me (if I was able to take the phone call) and then the answer probably wouldn't make sense because the doctor didn't understand the question. But Wendy was able to take care of the whole matter, including communicating with the GI doctor, within 48 hours. I've emailed her pictures of a rash or what I think might be an infection so she knows whether we need to come in or not, she calls prescription refills in to the pharmacy when I ask, and she gives me hugs (especially when I cry). I feel like she's more than my child's doctor, she is my friend, and Brian and I's partner in this business of raising a special needs child.

Sadie has 5 therapies a week. She sees a developmental vision therapist from Foundation for Blind Children on Tuesdays. Thursday mornings she has occupational therapy who works on sensory issues and spends a lot of time focusing on Sadie's hands (fists) and putting weight through her arms. Friday mornings Sadie has feeding/speech therapy. And Sadie sees the physical therapist twice a week on Wednesday and Friday mornings. When we got approved for these therapies, Annie, who works at the Dept of Developmental Disabilities (she's our coordinator from the state) sent me a list that was like 90 pages long. I weeded through that list for days, calling everyone I could to find therapists that were home-based. Sadie screamed in the car and it was unrealistic for us to go to therapy. But, we live in some kind of therapy black hole and many don't come to our specific neighborhood. We do travel to go to PT (which Annie told me we were lucky to even HAVE PT at Sadie's age), but everyone else comes to us, which makes my life so much easier (right, like my life is easy).

Our PT, Tami, doesn't come to our house, but she is worth driving to...and when we move, I plan to continue to make the 45+ minute drive to take Sadie to see her twice a week. Tami is not just a therapist, like Dr. Wendy, she is also a friend. She is a huge advocate for special needs children in our community, and she's like a "lending closet" and never hesitates to let us borrow something indefinitely. Tami is the one who introduced us to the Chill-Out Chair and let us borrow hers for like 6 months until we were able to get one of our own. And recently she gave us a high chair that someone donated to her because their kid had grown out of it. She is generous and kind and has such a positive outlook for Sadie's future. Tami gave me hope in the area of potty training. Tami keeps me positive about Sadie walking. Tami takes time out of her schedule to attend our other appointments like wheelchair fittings, and the spasticity clinic. Everybody knows Tami and everybody likes Tami and I feel lucky to have Tami in our lives. I would hate to have to leave her.

There are a number of amazing things we have access to just because we live in a big city with a very prominent children's hospital. There is The Foundation for Blind Children with all its resources and programs. There is United Cerebral Palsy, which has a childcare facility set up for special needs children. I'm hoping we can start taking Sadie after we move just so she can be around other kids a couple of days a week. We have a ballet company that includes all children, special needs and typical and puts on fabulous productions that use everyone no matter their ability (watch a video here). And there's the ADAPT Shop, which we're just learning about. The ADAPT Shop is through Southwest Human Development and provides low-tech solutions to those with physical challenges. We're hoping to get something called a Happy Chair through them soon. This is a chair that is built according to Sadie's size and needs that will support her where she needs it, but also encourage her to sit independently. I'm really excited to be taking part in this program.

Before we had kids, we discussed someday moving out of Phoenix, but things are different now, and you can see why it's beneficial for us to stay here. And these just scratch the surface. There are friends, other families, respite providers, events to attend, etc. Sure, things will change when we move across town. We'll have some different therapists and things, but I know enough people now to ask for referrals so that I don't have to wade through another huge long list of names of authorized agencies.

And in case you were wondering and waiting to hear what happened with Brian's job, he got the call and we're not moving to Las Vegas. His job changed a little, but as far as anything that effects me, or our family as a whole, everything's the same...only he'll probably be traveling less, which means he gets to be with us more often. So, we move forward with our plan to live here for the rest of our lives.

Thursday, November 3, 2011

Thanksgiving Day 3

When Sadie was born, we had a hospice nurse that visited us several times a week (because, you know, everyone thought Sadie would die), and then she started coming once a week and bringing a social worker with her every couple of weeks. And the thing that they both said over and over, the thing that people still tell me, is to have a good support system.

How do I do that when my closest family lives an hour away, when I don't really have any friends, and the ones I do have live on the other side of town?

Last summer/fall I started attending Foundation for Blind Children's Infant Program with Sadie on Friday mornings, and there was a parent meeting each week where I got to meet some people and make some friends. But we only saw each other at FBC, and we didn't always make it each week.

But then I was told about a group of moms who all live here in the Phoenix area who have formed a network, a support system for each other. All of these moms have children with special needs ranging from Cerebral Palsy to genetic disorders to near drowning accidents, and they call themselves the Mighty Moms. And they connect via Facebook (now, there's something I can do regularly!)

I requested to be added to the group on Facebook, which is private and exclusive. And then I soon got an invitation in my email for a dinner get-together. You see, each month, these women escape "real life" and go out to dinner together. And it's different than just going out with your friends, because these women understand how badly you needed to get out of the house, and they understand that as soon as you go home and walk through that door, you'll have to hit the ground running and you'll never have time to bask in the glow of your evening out.

I remember I was so excited to attend that first dinner. I knew one person in the group (the woman who introduced me to it) and she wasn't going to be there. I didn't care. I needed this. It was 4 days before Sadie's g-tube surgery, 6 days before school started, and I needed a last hurrah to say goodbye to the summer!

I haven't missed a monthly dinner since then.

There is just something about a friendship that is based on the foundation of shared hardship. And sure, my struggles with Sadie might be different than someone else's struggles with their kid, but the fact is, we all struggle. And we get that, we know that about each other. Life isn't easy for any of us. But for those few hours that we're together each month, it is. We laugh and joke and drink and eat and hug and cry just like "normal" people...and then we go home feeling like we've had our batteries recharged and we can make it another month until we get to see all our friends again.

And we share. I love the Mighty Moms Facebook page the week before the monthly dinner because there are dozens of posts from people asking if anybody needs diapers because they have a bunch extra (for some people, if their child is older and still wears diapers, insurance provides them for free), or someone else might have extra formula because their tube-fed kid has started eating food now and doesn't need everything they get from insurance. This last dinner, I gave someone a bunch of bags that go with the feeding pump, because we just don't use them anymore. So, when dinner is over, it's like a big gift exchange as we all walk out to the parking lot together and get stuff out of our cars and give it to someone else! It's so neat to see so much sharing and giving.

This group of women is truly special and I am so thankful to have found them and that I get to be a part of their group. I honestly can now say that I feel like I have a support system.

Wednesday, November 2, 2011

Thanksgiving Day 2

I honestly need a bumper sticker that says "My Mother in law is nicer than yours"...because it's true.

I have friends who have told me horror stories of how their mothers in law judge them on everything. Their cooking, their housekeeping, their parenting, none of it is good enough. But not my mother in law!

From the first day I've known Pam, she has been nothing but kind and generous to me. She even takes my side AGAINST Brian when I joke (complain) about his bad habits! I admit I was a little worried at first because Brian is an only child, and I felt like she might be possessive of him since Walt passed away. But I quickly learned that she is NOT your average mother in law. The birthday card she e-sent to me this year had a (mostly) naked man on it!!! And she sends us flowers every year for our anniversary.

When Brian and I got engaged, she paid for our honeymoon by giving us BOTH of her timeshare credits and her website ID for the timeshare exchange and basically told us we could go anywhere we wanted. And we had a FABULOUS honeymoon cruising the Eastern Carribean!

Pam's husband, Karl, and her travel for much of the year in a really nice motorhome coach. This thing is fancy! I mean, it's probably nicer than my house! And when it was clear that we were going to settle down here in Phoenix, so did they. They bought a piece of property to park their motorhome on and we get to spend from January through April with them every year! And often we also get to see them in November! We don't get to see them as much as we'd like, but when we do get together for dinner or baseball games, we always make sure we play dice!

The summer I got pregnant, Brian was traveling a lot, so Pam invited me to spend a few days with her in New Mexico (they have a "permanent" residence there near Albuquerque), so I went. We took a road trip and stayed in a hotel together and visited the Pueblo in Taos and we shopped in all the little weird touristy shops and it was a really fun time. She didn't even mind when I was up in the middle of the night throwing up or puking in the car or eating cereal at 5:00 in the morning or just not in the mood to eat anything! She took it all in stride and made me feel as comfortable as possible.

At my baby shower Pam didn't bring a gift. Instead, she waited until she was one of the last people there and she said, "when are you and Brian available tomorrow? I want to meet you at Babies R Us and buy you whatever else you need." I was shocked. And she was so patient with us the next day when we couldn't decide on a car seat and couldn't agree on the color of the stroller. She was just happy to help.

I asked Pam to take pictures of Sadie's birth (even though I never had any plans of sharing them with ANYONE!!). Since we had a homebirth, it was really special to be able to have her there right in the action. And I probably never told her this, but I always appreciated that she never gave me a lecture on having a homebirth, even though I kind of knew that's not the way she would have done things!

Pam and Karl came to the hospital everyday when Sadie was in the NICU, even though it was about a 45 minute drive. And Pam cuddled Sadie the day we thought we'd lose her, and she cried with us. And when we brought Sadie home, she came over and cuddled her more. I have always loved that she knows how special Sadie is because she was right there when everything happened. And I can't wait for them to see Sadie when they come to Arizona this year, because she's such a big girl now! We have so much showing off to do!

Last year for Christmas, Pam presented to me a poster-size cross-stitch she made for me. It has a border of little teddy bears doing different things like being a doctor or a teacher or a ballerina and it says "I can only imagine." Then there is a place for a picture of Sadie right in the middle. She told me that each time Sadie reaches a new milestone, or does something that doctors told us she'd never be able to do, we should change the picture so the piece of art can grow with Sadie and remind us that God has bigger plans for Sadie and that we can only imagine what those plans are. (Which reminds me, I need to change the picture to one of Sadie doing her big-girl sitting!)

I am so thankful for my mother in law and all that she contributes to our family. I have told other people this before, but since I'm giving thanks for something specific every day this month, I thought I'd take this opportunity to thank her publicly.

So, does anybody know where I can get that bumper sticker?

Tuesday, November 1, 2011

Thanksgiving Day 1

It's November, the month of Thanksgiving. Last year many of my friends on Facebook named something they were thankful for every day of the month. I thought that was a very good idea. However, last Thanksgiving Sadie was still screaming in the car, sleeping in our bed every night, and nursing. Times were different than they are now, it was hard to find things to be thankful for back then. This year I want to take that challenge, and I want to also try to add to it some blog posts as I see fit.

Today I wrote on my Facebook status that I'm thankful that my child sleeps through the night. I couldn't say that a year ago. And while that IS a big deal, I can't help but be even more thankful that I even have my child at all. I know that sounds trite, but it's a fact of my life and I don't think I will ever stop being thankful for it no matter how old she is. Today I was given an update on a little girl whose brain was cooled over the weekend. She had been born not breathing, and cooling seemed to have gone well. The last update I heard was that they were going to start pulling her off the ventilator and remove her umbilical line!

And then today I got the news that she had died.

And it brought it all back. I remember the umbilical line for Sadie was the last one they our request, that we just wanted to hold our baby "unhooked" for a little while before she died.

Last weekend we attended an event at the children's hospital that was in a courtyard newly built between the old building (where the NICU is) and the new building. Therefore, the closest bathroom to change Sadie was the one right outside the NICU. Often as I wash my hands anywhere in the hospital, the smell of the soap reminds me of that horrible experience the week Sadie was born, but I was not prepared for the memories it created in that bathroom I used multiple times a day for the most horrible week of my life. As soon as I started washing my hands, it was like I was having an out-of-body experience. I could see myself in that same bathroom while the midwife checked my bleeding. I could imagine my mom and I washing out the breast pump equipment. It was all I could do to keep it together until I could leave.

But just as I was finishing my handwashing and all these memories were flooding my mind, I looked at my Sadie and I realized that this bathroom doesn't have to be sad for me anymore. It was a place I remember being during a very hard and sad time in my life, but coming back WITH my child they told me was going to die was somehow healing. It was akin to the man running a marathon after being in a serious car accident and told he'd be confined to a wheelchair the rest of his life.
It was liberating.

So, while my heart grieves for this family that I don't even know, who had to come home to an empty nursery, at the same time I am filled with Thankfulness that I have my little spesh to hug and kiss every day.

Life isn't always grand, but it's life, and that's more than we were ever promised.