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.

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.

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?

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 pulled...at 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.

Happy Halloween!!

This Halloween I made Sadie a special Halloween dress. We're not really into Halloween and we don't give out candy or go trick or treating (how do you with a 1 year old who can't walk, talk, or eat candy???). So, why put Sadie in a costume?

Enjoy these cute pictures of Sadie sitting and wearing her Halloween outfit!!

My very special birthday present

Yesterday was my birthday. It didn't feel like a birthday, there wasn't any singing or balloons or even people jumping out from behind furniture yelling "SURPRISE!!" Nope, just a normal everyday day...with cupcakes, of course.

But today, the day AFTER my birthday, Sadie and Brian gave me the most wonderful gift! Sitting. I couldn't take Sadie to PT today because I had to proctor state testing (and yes, I did that yesterday too...on my birthday). So, Brian came home with this video and we can't stop watching it. It's so amazing.

Emails from Strangers

Today I got an email from someone I don't know. This happens probably once or twice a month, someone finds our blog by searching for answers about their newborn with HIE or microcephaly or CP...sometimes, like this time, it's someone who knows someone who knows us. The funny thing is that no matter when I get these messages or what they say, it always seems like perfect timing for the perfect words. (God know our hearts, doesn't He?)

The one I got today was from a lady who went to HS with Brian's uncle. She told me a story about her aunt who has CP from being born premature. But her aunt was born in 1953 and things were a lot different back then for little special needs kids. They didn't have the services they have now. There weren't laws and policies in place to protect them and to make sure they got what they needed. Instead, it was common for doctors to recommend that these children be institutionalized and that the families just forget they ever were born. And sadly, that's what many families did. But this family was different. They had tried hard to have children and had many failed pregnancies. They were not about to "forget" their child, they had worked hard for this little girl and they were going to give her everything she needed, even if that was going to be more work.

She goes on in her email to tell me that her aunt walked for many years even after doctors said she never would. She talks about how her grandparents created their own homemade adaptive equipment so that she could feed herself. And when they were told she'd never read or write, her grandmother was determined to prove everybody wrong on that point too. This child was loved and her parents worked hard to give her the support she needed to become what many said she'd never be!

But she doesn't fail to mention that there were also hard times. She tells a story about her grandmother ordering special shoes for her child and the man telling her they only come in brown. But little girls didn't wear brown shoes back then, they wore white ones. And when she was told she had no choice, the shoes were going to be brown, she felt so defeated that she found a quiet place and just cried. She cried over brown shoes, because it was that one little thing that finally broke her.

This story is so encouraging to me in a couple of different ways. First of all, it's good to know that sometimes the little things are worth crying over. Sometimes you fight and fight and fight for all the big stuff that by the time you lose on one of the little things it can feel more defeating than it really is. White shoes vs. brown shoes may not sound like a big deal to you, but when your child is already so different from everybody else, the last thing you want to hear is that they can't have one more thing that every other child gets to have. It's not really silly at all, because you know in your heart that it's only one thing in a long list of things your child will not get because she's "different."

The other encouraging aspect of this email is that it serves as a reminder that Sadie is only 1 and a half. She has a LOOOONG way to go and a LOT of time to get there. Sometimes I am tube feeding her because she won't eat and I'm thinking to myself, "she's never going to learn to eat, we're going to have this tube for the rest of her life probably." Then I read a story about someone who's child was tube fed for a decade (yes, 10 years!!) and now eats and drinks totally independently with no issues. That's a long time...a lot longer than the 5 months we've had the tube. And I read stories like the email I got today about how they taught their child to walk and to read and I think to myself, "oh yeah, we have time, she's only 1 and a half!"

Look how far we've come just in a year! A year ago Sadie screamed every car ride. A year ago Sadie was still nursing! A year ago, Sadie didn't have any teeth!! A year ago Sadie was sleeping in bed with us and had to be held to take a nap. Think of what another year can do for us!

Sure, we have a long ways to go...Sadie can't even sit independently yet, but we have a long time to get there. My goals for Sadie aren't lofty and unrealistic, but maybe I set them low to increase the possibility of reaching them and surpassing them. And when I have days when I feel like all is lost and my kid is never going to do anything but sit and scream her head off, those will be the days, surely God will have somebody send me an email and remind me that my efforts aren't wasted and someday this little girl is going to have an even more amazing story than she already does.