Monday, October 31, 2011

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!!

Wednesday, October 26, 2011

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.

Tuesday, October 18, 2011

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.

Saturday, October 15, 2011

National Pregnancy & Infant Loss Awareness Day

Today was National Pregnancy and Infant Loss Awareness Day. I don't mean to dampen anybody's experience with loss of a pregnancy or the still birth of a child, but I think it's also important to remember those who didn't physically lose their child, and still lost so much.

I know a little bit about how much it must hurt to lose a child. I know because I experienced it. Sure, I have Sadie now, but I was told I wouldn't have her. I know what it feels like to have a baby and go through hours of labor and pushing and then be told that all that work was for nothing, that the nursery you'd spent so much time making perfect will be empty, and to take as many pictures as you can now because you won't ever get to again. We cried ourselves to sleep every night after we came home from spending all day at the hospital. And when we made the decision to unplug Sadie's breathing tube and to not resuscitate her, we spent 2 sleepless nights at the hospital waiting for her last breath, both dreading it and wishing it would hurry up and happen so we could grieve and get on with our lives. Even after we brought Sadie home, we were told not to expect her to live through the week. Every night she slept between us as we listened to her breathe, not knowing if she'd still be with us in the morning. And even though she survived that first week, and a lot more, I still feel like I lost so much. And I feel like it's also worth recognizing so many of that didn't lose our child physically, but lost so much in other ways.

I grieved when Sadie was born because I thought she might die, but I grieved again when I learned that her head was small and it probably always would be. And I grieved again when I learned she has a significant visual impairment. I grieved when the realization hit me that my child will never look normal. I grieved when she couldn't eat enough to gain weight and when we had to start tube feedings. And I grieve everytime I know my child is in pain or uncomfortable but she is unable to tell me what's wrong. It took me most of that first year of Sadie's life before I stopped wishing she had passed away, because things might be easier. In fact we're coming up on 2 years and I still entertain the thought of what life would be like if we didn't have Sadie and had gotten pregnant again right away and now had a perfectly healthy normal child. Would life be easier? Probably. Would it be less sad? Probably not. Because as Sadie grows and we encounter new things like wheelchairs and other adaptive equipment, I will continue to grieve and be sad, but not in the same way as if I were wondering what my child would have looked like or who she would have grown up to become. Not sad like wishing she was still here in my arms.

It's really sad when people lose a pregnancy. I cried when my best friend called me from the ER after she had lost her baby. And I bawled through reading about my cousin's miscarriage via her blog. But, as you recognize these situations on days like this that serve to promote awareness, please don't forget those of us who are living with our losses each and every day.

Friday, October 14, 2011

Theme Song for a Tired Mom

This is what I wish my theme song was for my life:

However, this is more of an appropriate song:

What do you think? Anybody with me on this???

Thursday, October 13, 2011

Wheelchair Clinic

Sadie had her first experience with the CRS (Child Rehabilitative Services) Wheelchair Clinic today...and it went really well.

It has been established that Sadie needs something more sturdy, more supportive, more big than the current stroller we use now to take her places. All this weight gain since getting her tube has really made her TOO HEAVY to carry. We use the stroller all the time. So, after our appointment with "the gatekeeper" at CRS, we got a referral and an appointment at the wheelchair clinic to get her measured and to pick out what we want.

I asked other moms to see what they liked. And I talked to Sadie's Physical Therapist, who said she'd attend the appointment with us. And I went in knowing that it needed to be light enough to lift and be able to fold up small enough to fit in the back of my little VW Golf hatchback.

It came down to a choice between 2:

This is the Kid Kart. And it's cool because it has nice big tires (for off-roading!!) and the actual seat comes out and can be turned to face out or to face backward. I really like that about it. It folds up pretty small, but it folds up in two pieces; the base and the seat, so it's a little clunky and inconvenient. I like how there is a platform for her feet to rest, which gives her that input in her feet. It also provides a lot of support through her trunk and her head to prevent slumping. However, it looks really "wheelchairy" which I'm not sure I'm ready for yet. I also felt like, when we were pushing her around in it, that she was just out there. She wasn't very protected. It felt like she was sitting really high and kind of just floating out in space. It was a little awkward.

Then there was this wheelchair, which was really the only other choice.

This is the Convaid Cruiser C-sport. There were a few of these for us to try. The red one is actually their floor model and is there for trying. However, it's a size 14 and we thought it seemed a little big (it looks huge, I know). The blue one belonged to a customer and was waiting for pickup, but we thought it was a 12, so we tried Sadie in it...turns out it was also a 14. They ended up finding us a 12, but it was almost too small. It was determined that she needs a 13...but they don't make a 13!!

We ended up ordering this wheelchair because it feels more like a stroller, like what we already use, it's just a bigger version. It completely supports her and doesn't have her out in space. We also ordered the size 14, even though it's a little big because we thought she would grow out of the size 12 probably by the time we got it!!

Oh, and we picked teal.

So, we're pretty excited and I wish it didn't take so long because the stroller we have is really insufficient and I hate using it. They say it takes 6-12 weeks for insurance to approve it, but they order it anyway, so once insurance approves it we'll just be able to go pick it up, it's not like then we'll have to wait for them to order it. I'm hoping we'll have it in time to visit Grammy in Oregon for Christmas!!

Tuesday, October 11, 2011

House Hunt Update

My last post was about the dream I had about the perfect house, now I have real news to share with you.

We have been looking for the perfect house for many months now. In fact, we thought we'd be moved into it by now. It's just been really hard to find the perfect place to live. When we started out we were mostly looking at the size of the kitchen and making sure there weren't any handicap hazards. But then we (and by we, I mean me) had visions of living there for the rest of our lives. I want our next house to be the place where we raise our children, where they live all their lives and where they come home to at Christmastime from college. I want it to be Grandma and Grandpa's house where our grown-up children bring their children and tell them stories about growing up there. This is how I grew up, and this is the culture I came from, and this is the experience I want to share with my children. So, as you can imagine we've had to be very very picky.

So, we got creative. We thought maybe we should find a house at auction and asked our realtor to send us a list of pre-foreclosure properties. The list was 27 pages long, with 10 houses each page. All we had to go on from the list was square footage, really. So, I started weeding through them. I'd look at the ones that were big enough for us according to square footage, and then I'd type the address into Zillow and Google Maps and I'd get an idea of what the house was worth and where it was located. And out of the first 10 pages or so, I came up with a list of about 7 houses. And then we asked the realtor for previous MLS listings on these 7 houses. Out of all of them there was one that we were really interested in.

There were no pictures. We could tell from Google Maps only that it didn't have a pool. We knew what the square footage was. It had an auction date for sometimes in October. But for some reason we wanted to know more and to go see it, so we had our realtor call and get some information.

It was complicated and I'll spare you all the crazy boring details, but basically the house had an uncooperative tenant, one offer, and the owners lived in California. But after some poking and prodding, we got a chance to go look. However, that was a day that Sadie was struggling, so Brian went by himself. He decided he really liked it and he took a video (which isn't really that good) where I could kind of get an idea of what the house looked like. I liked enough of what I saw that I was willing to write the offer...but we were lucky enough to get in there and see it again.

We didn't have a lot of hope, but we submitted the offer, which was $10K higher than the other offer, so our only chance was that the other buyer would back out. The selling realtor didn't really think the other offer was that serious anyway.

We pushed and pushed and pushed. And luckily we have an EXCELLENT realtor who has a lot of experience (probably more than the selling agent), so he was able to kind of use some leverage and suggest some things that we were unaware of. But we still didn't have a lot of hope, in fact we were starting to look at other houses. And then we had a breakthrough.

Just today, we got an email from our realtor saying that the other buyer had cancelled and that our offer had been accepted!!!

He also told us that as far as short sales go, at this point in the process, we're in the best situation possible. I think it's because since there was a previous offer the short sale process was started and a lot of the "foot-work" has already been done. So, hopefully our offer just shoots right through smoothly and quickly.

We're hoping to move in for Sadie's second birthday (January).

What makes this house so perfect? Mostly it's the neighborhood. We want to live there the rest of our lives, we want a nice, established neighborhood. But the house itself has 4 an office. It has a nice, big kitchen. 2 of the bedrooms are in a separate wing from the other two...perfect for slumber party all-nighters where mom and dad don't want to be bothered! It doesn't have a pool, but it has a nice yard with some mature citrus trees. Brian has promised to plant our pomegranate trees in the ground when we get there...and of course we'll be digging up and bringing with us the banana tree.

Hooray for the perfect house!!

Find more information about Jim Gordon (our fantastic realtor) here, and find him on facebook here.

Monday, October 10, 2011

The perfect house

Last night I had a dream that we found the perfect house.

For those of you who don't know, we're searching for this very thing...and it's taking a long time.

But in my dream we found the perfect house. It was in a "forgotten" neighborhood. The kind of neighborhood that used to be nice and full of rich people, but has over the years changed and is now full of renters, immigrants, and the working class. But this didn't matter. It also didn't matter that this house was trashed. Not the kind of trashed where you need to remodel, but the kind of trashed that you'd rather hire someone to deep clean for you than do it yourself.

This house was on a cliff and had a spectacular view of the ocean, and that was what made it perfect. It also had 3 bathrooms, and you could control the tub faucets in each bathroom from one central location in the master bathroom if you wanted. And there were slides you could go down to get to the children's rooms. And the master bedroom had a balcony. And it had a big kitchen.

I remember in my dream that the neighbors were all sitting outside visiting with each other when we moved in. And, even though they were simple people, they were friendly and helpful. They watched Sadie while we cleaned and we felt safe leaving her with them.

I just wish we could find the perfect house with friendly neighbors in real life...I'm getting sick of so much hunting.

Saturday, October 8, 2011

The future is scary

Sometimes I fret about the future. When I was pregnant, I tried to force Brian to make rules with me about ear piercing and makeup and boyfriends concerning our unborn daughter. I know, all aboard the train to crazy-town.

Now that I have Sadie, I'm still on a train bound for crazy-town...but what I stress about is a little different. Let me show you what I mean...

Sadie is one and a half and pretty much all she does is lay on the floor or sit in her chillout chair. She doesn't do much...will she ever? We have an appointment with the wheelchair clinic this week and, I never thought I'd say this, but, I'm excited to get a wheelchair for her! Why would I be excited??? Because having a wheelchair means a strong, sturdy, supportive way to transport Sadie. Right now we're using a stroller that was fine when she was a baby, but she's coming up on 27 pounds now and the stroller just isn't cutting it for our mobility needs. Secondly, a "real" wheelchair gets us access to certain things and special treatment. When flying, we'll get to seat first, and there will (hopefully) be a little more urgency about having her wheelchair waiting for us in the jetway (instead of baggage claim...ugh). And maybe, just maybe...we'll get a handicap parking permit!!

But what does a wheelchair mean for her future? Remember when we saw that orthopaedist who told us Sadie would never be independently mobile? I've thought a lot about that comment. I've talked about it with the physical therapist, with my mom, with Brian, etc. and I don't see Sadie being independently mobile, I think she will always need a wheelchair. However, what I do see is Sadie being about to get around the house without her wheelchair, be able to climb into the car, and be able to walk from the jetway to her seat on the airplane. Of course, these things will probably require a little assistance. But, if she uses a wheelchair at school, at the mall, at Disneyland, that's okay. (plus hopefully we'll get to go to the front of the line and get on the roller coasters faster!!)

The future for Sadie scares me. Will she be able to talk at all? Will we be able to travel with her? Will she be able to sit ever? Will her hair be long and pretty to disguise her tiny head? Will we have to get a wheelchair van? Will her brothers and/or sisters be embarrassed of her? Will we ever have an empty nest? And what about potty training???

Recently I had a conversation with the physical therapist about potty training. I told her I'd like Sadie to be potty trained by the time she's 10. I think that's a reasonable goal. She told me she thinks potty training is totally doable for Sadie and that we should think about maybe starting when she's 3 or 4. That's exciting...but scary. How will she communicate that she needs to go? Will she be able to sit and balance herself on the toilet? Will she be able to get to the bathroom on her own or will I have to take her in there, strip her, and place her on the toiter? (wouldn't it be nice if she was mobile enough that she could take herself in there when she needed to go?!) See? Scary.

I guess we'll figure it out when we get there.

I also think about my own personal safety. Sadie is over 25 pounds, and growing so fast. She's huge. It's getting hard to lift her from the floor. Getting her in and out of the car is sometimes a struggle. What would happen if I hurt myself? If I can't lift her, who will??? What about when I get pregnant again? I can't be lifting 30 pounds of dead weight. And she's not even that big. She's one and a half...she is going to get so.much.bigger.

The future is scary for all parents, I think. And if I weren't worrying about how to change a diaper with periods and pubic hair, I'd still be worrying about periods and pubic hair. Instead of worrying about teen pregnancy and will she marry the right boy and will she get a college education, I'm worrying about how I'm going to lift her, and if she'll ever be potty trained, and when we'll ever get rid of the tube and she can feed herself. I worry about seizures and hip surgeries and wheelchair vans. But no matter what I am worrying about, the lesson is still the same...I need to just enjoy her now and worry about the future when we get there.

Friday, October 7, 2011

I'm not alone in my fears

Life is largely about perspective. If you've never had a problem getting pregnant, if you've never lost a baby, if you have multiple healthy, happy children...then getting pregnant again or having another baby isn't scary for you. But there are too many people who have experienced terribly traumatic circumstances with their newborn child, or even worse, lost their child completely.

Recently my cousin, who had a hard time conceiving, got pregnant...and then miscarried. And she blogged through the whole thing, she is still grieving and blogging, and probably will for a while as I imagine it'll take a while to completely heal from the experience. But, as I read through her posts about what she lost and what she was so looking forward to that she will now not get to experience, I couldn't help thinking of my own experience. I am not here to say that one situation is worse than another or even that I totally know how it feels to lose a baby, but I can relate to her when she asks, "how can I ever enjoy pregnancy ever again???"

We are looking forward to having more kids, in fact we want 2 more. But next summer when we hopefully are able to conceive again, it will be a fine line between excitement and fear. For 9 months I will constantly think about the mommies I know with 2 speshy kids, I will probably have nightmares about the NICU, and I hope I have an excellent midwife who is patient with my paranoia, because I may call every 2 days in fear of less movement. I will not ignore any little sign ever again or count it as "all in my head." A mother does know when something's wrong, and I have learned to rely much more on my instincts since I've had Sadie.

I read what my cousin wrote about feeling like she couldn't get excited, or walk the aisles of the baby store until she is 9 months pregnant and knows she'll get to keep her baby. But I know that even if you carry that baby longer than 9 months there is no guarantee that you will get to keep him/her. I don't know if my next child will have anything of his/her own until after he/she is born. I don't think I could face again coming home each night from the NICU and facing an empty nursery that might not ever have a baby in it.

Some of my "friends" that I've connected with via the internet who have babies the same age as Sadie and also experienced an HIE experience are starting to get pregnant again. It's scary knowing that we're all high risk now. It's scary knowing that we could experience the same thing all over again. It's scary thinking about our one kid who already is high-maintenance and then adding a baby to the mix. The whole thing is scary. And I'm not sure it will be enjoyable at all for me.

But it's nice to know that I'm not alone. And Jesica, neither are you.

If you want to read about Jesica and her experience, you can visit her blog by clicking here.

Monday, October 3, 2011

Please be more sensitive

Months and months ago, someone posted on Facebook how disgusted they were by a family who changed their toddler's diaper on a picnic table at a water park. I thought to myself, "I've done that with Sadie..." so I commented reminding this person that before they judge, they should take into consideration what they may not know about this family. Maybe the child is autistic and is FREAKED out by flushing toilets or tile floors. Maybe there is no changing table in the bathroom. Maybe the parent has some kind of disability or impairment and therefore it was easier to just change the child outside. WHO KNOWS??? But how often do we do this? How often to do we judge someone or make comments about their actions without even knowing them?

I used to do this a lot (I still catch myself doing it when I drive!), but now I'm a little more tolerant...especially of people with children.

I know that sometimes taking a normal child out in public is a struggle. They get overtired and cry and throw fits. They want something and if you tell them NO, they throw themselves on the floor in the middle of WalMart and start screaming. Heaven forbid they have a potty accident in the middle of The Home Depot!! Who knows where the bathroom is in that place?! (actually, I do, when I was pregnant I think I visited every bathroom possible in this city, I must hold some kind of record or something) And all these are just from a normal child, a child that 99% of the public are familiar with.

But what about a child with special needs? How much more complicated can a trip out in public get? Well, it depends on your child. Someone I know just posted a story on Facebook about an incident in WalMart today with her autistic son trying to take something from someone else's cart. I took Sadie to Chipotle last week and tried to sit outside where I wouldn't bother anyone, but there was only 1 table available in the shade and unfortunately it was right next to a couple of ladies trying to enjoy their lunch break. And unfortunately Sadie was tired and whiney-screamy. There are still things we need to do in our lives, and sometimes that means that our children with special needs might bother you in a public place.

I don't think the mass public gets it. And that makes me sad.

Recently, someone I know posted a video on his Facebook page that he took of a child in the airport when returning from his honeymoon. This child was obviously overtired and whiney and couldn't decide if he was mad or sad or overstimulated. He just needed a nap, but waiting to board your plane is hardly the place to help your child fall asleep. He titled the video "most annoying cry ever" and his newlywed commented that she wanted to strangle this child. I was horrified.

I can't even imagine someone having the audacity to videotape MY child and then criticize or poke fun at her on Facebook!!

I tried to explain to this newlywed couple that this post was very insensitive and to make judgements about those parents or that child on Facebook was very inappropriate. They don't know if this child has special needs, how strung out that parent was, or even how long they've been traveling or why. My comments were met with a response riddled with ignorance, and I realized that these people don't get it...and don't want to.

You can't expect me to NOT take my child with special needs out in public, or not to travel with her on a plane. The fact is, she CANNOT talk, she CANNOT express herself in any other way but to yell. She yells when she's happy, she yells when she's uncomfortable, when she's in pain, when she's overstimulated by noise or lights or just way too tired. (although we've been having a talk lately about NOT yelling when she's tired, but just taking care of business like a big girl and closing her eyes...Sadie is not seeing things my way yet!) If you're near us, this kind of behavoir might bother you. And even though you might look at my child briefly and think she's a normal baby, she's not. I can't just ooga-booga in her face to make her stop. She doesn't just suck on a pacifier. She can't hold toys in her hands by herself. And she requires a LOT more movement than just holding her and rocking her to calm her down. Therefore, it's not always going to happen in public....not without drugs. And I'm sorry for that. Trust me, I'm aware of your irritation, and I'm really really sorry for being the source of it. But at some point, I have to stop caring what you think and just try to survive. I just hope you realize that. And I hope you don't make judgemental comments about me on Facebook. You have NO IDEA what my life is like!

I made a comment today on Facebook that people should stop wasting their energy on complaining and being offended and start using that energy to educate people on others' differences. So, I'm not here to complain or simply tell a story about how I hope people don't judge me or my child when we're having a breakdown in public, I want to help you realize that not every child is normal...but even the normal ones can sometimes be tough to handle. Please don't be quick to judge parents and/or children in public. Please don't post videos on Facebook of other people's children who may be irritating you in public. And please don't make comments like you were so annoyed you wanted to strangle the child who was bothering you in the airport.

Instead, please try to be tolerant and understanding. If you can, give that struggling parent a smile to show that you sympathize and you're sorry they are having a rough time. I guarantee you they are sorry to be such a bother. Or offer to hold something or carry something for them in the airport, or to let that person go first in the line at the grocery store. Remember to put yourself in their shoes, because, who knows, someday you might be.