Sadie's first therapy table

This last weekend Sadie got a therapy table. I had been talking to a friend about the one she has in her therapy office, because I like it a lot and I think we could really benefit from something like that at home, back in December. The goal was to have one made or to make one in time for Sadie's birthday. Unfortunately, we moved, then we went to Oregon, then my cat ran away, then school started, then Grammy came to visit, blah blah blah...and the table never happened.

Well, last week, since Sadie was at Ryan House and I had all this extra time on my hands, I finally called a guy who I was told could make us one for a reasonable price. I told him I wanted it to be at sitting height and that yes, 4'X6' was a good size and he said he'd probably have time to make it over the weekend. WHAT??? This was Monday! I am so used to everything special needs taking 4-6 weeks standard that I was shocked by this response...and a little excited.

But it gets better...he called me Friday and told me it was done and we could come get it on Saturday!

My mother in law came over to hang out with Sadie, while Brian and I drove almost an hour (one way) to pick up this table. It was too wide for the bed of the truck, so we were lucky we left the lid on and could just strap it down to that. It probably could have been more secure, but we made it home okay!

It quickly made camp in our living room. It was supposed to rain Saturday night, so we didn't want to leave it outside, since it's raw wood. Plus it needed to be painted or stained or something, so why not right here in the living room??? (we couldn't use it until it was treated with something, so I was eager to get that done right away!)

So, there's this routine that I tend to go through with my dad everytime he comes over. I say something about needing something we don't have, he tells me he's got an extra whatever it is and I should have said something because he could have brought it over! Well, not this time.

I called my dad early Sunday morning and asked if they had any old paint (that was still good) in their garage that I could use on Sadie's table. I remembered at one house they lived in a long time ago they painted one wall of their bathroom this gorgeous turquoise color and I remembered seeing extra paint in that color in their garage, and I didn't even know if the paint was still good or if they still had it...but it was worth a call.

Turned out my dad had a brand new, still sealed can of that blue paint...and a brand new, still sealed can of primer! Excellent. Free paint! That crap is expensive!

Oh, and he came over to help me paint the table too.

So, after a few hours and some minor paint fumes, we got a coat of primer and two coats of paint on our new table. And then let it sit over night to "cure."

Yesterday afternoon, I rearranged some things and set up the table for Sadie and she seems to enjoy it!! It looks good in our living room because it's a kid color and it goes with the other kid stuff. Eventually it'll be moved into a sensory/play room that I plan on creating for our babies, but for now, it's fine right where it is.

I'm really excited for this table to become a permanent part of our family. Not only can it be used for changing diapers (Sadie is getting too big for that changing table!) and for doing therapy stretches, but it can be used to pull up to standing, to lean on as support or to sit at with a chair like a big table!! Things can be placed on top of it and her stander can be pulled up to its side so she can interact. Or it can just be a place to lay and chill.

One friend of mine suggested decorating it with Sadie hand or foot prints each year as she grows and using a paint pen to write on their her achievements and milestones. I thought that was a great idea. We'll start with feet prints, and hopefully those hands will be open enough someday that we can do handprints (that's a milestone in itself!). And maybe Sadie will have enough fine motor coordination one day that she'll be able to draw her own picture or write her own name on the table...how cool would that be?

This is definitely a blessing that we are very lucky to have.

We really are blessed

Listening to K-Love (Christian radio station) always reminds me of how blessed I am. They are constantly sharing people's stories of how God has blessed them. One of these days I will call in or write and tell them about Sadie. I have this desire to share her story with the world...and I realized tonight that it's because she is a HUGE blessing. So what if she's almost 16 months old and she can't sit independently or talk or actually reach her mouth with her hands? She can do so much more: She can light up a room with her smile. She can make women everywhere jealous of her eyelashes (even perfect strangers comment on how long they are). She can inspire hope like I've never felt before. She can make my heart feel like it's going to burst when I see her sleeping. She can do SO MUCH MORE than anyone ever thought!

This week we're trying out Ryan House for the first time. I stayed there the first 24 hours and tried REALLY hard (mostly unsuccessfully) to let the nurses and volunteers take care of her. But I found myself talking so much about her and telling anyone who would listen our story. It still brings me to tears thinking of that day we prepared ourselves to say goodbye. And I never get over how amazing it is that she's made it so far.

We've had the same nurse for 2 days now, and I found myself getting deeper and deeper into our story. I started telling her about our blog. And just vocalizing how many people love us, telling her about how quickly we raised $500 for Sadie to get an ipad (that check came in the mail today, by the way), explaining that people who are friends or relatives of people we don't even know pray for us, read our blog, send encouraging messages, really reminded me that we are blessed. I was remembering how much support we received right off the bat, how I finally came up with the idea to start the blog, and make a facebook page for it because everybody wanted to "friend" me and I had all these random people reading my posts about things that had NOTHING to do with Sadie! We've sure come a long way.

We are blessed. Sadie is beautiful. Sadie brings beauty to so many others. Sadie has taught me about love, about sacrifice, about hopes and dreams. I am not a supermom and I will never think that I am, but I am a lot stronger than I was before Sadie entered our lives. Every once in a while, I need K-Love to remind me that the reason this blog is called Beck Family Blessings is because it is about blessings. It's about thanking God for what He's blessed us with, and finding the good and the encouraging and the positive even in the hardest and most trying situations.

And so I leave you with a song by Chris Tomlin. I hope that it inspires you to think about your blessings and who is really responsible for them. To God be the glory.

God's Mercies in Disguise

There's a beautiful new song that they play on KLove now called Blessings. It's by someone names Laura Story, I guess she's new, I've never heard of her. But the song makes me cry everytime I hear it. The chorus says:

What if your blessings come through raindrops

What if your healing comes through tears

What if a thousand sleepless nights are what it takes to know you're near

What if trials of this life are your mercies in disguise

The whole song talks about how we pray for all these great things: wisdom, God's mighty hand, goodness, for God to be near, for blessings...but when we experience pain we cry out for God to come take it from us. And when we suffer, we beg for God's mercies. But what if our hurt and disappointment are actually answers to the things we prayed for, they just look different than what we expected.

I don't think God wants us to suffer, but I think suffering is part of this world we live in. And I think suffering is necessary so that we can remember that we need God. So that we can remember how good God is even when everything around us sucks. And so that we can remember that God's promise is that someday all our suffering and heartache and pain will end.

I think it's important to recognize our suffering, but I don't think it's healthy to dwell on it. I know someone who has had a lot of horrible things happen to her (and she's not that old), but it seems like she's always talking about and dwelling on and remembering these hard times instead of rejoicing in all the blessings she has right in front of her on a daily basis; 2 beautiful children, a husband who loves her, etc.

That's why we call this blog "Beck Family BLESSINGS." Because even though Sadie is the worst thing that ever happened to us...she's also the best thing that ever happened to us. Instead of everyday thinking about and dwelling on that horrible night she was born and those nights of sobbing with Brian while Sadie slept in the NICU, I look at her and I see the cutest baby ever. I kiss her when she wakes up in the morning, and when she goes to bed at night...and, let's face it, all day in between! When I look at her I see a miracle, not a tragedy.

I guess that's why the song makes me cry. Because I get it. My blessings might come through all the generous people donating to help Sadie get an ipad. But my blessings also come through staying up until 4:00am with a teething baby who can't sleep because she hurts too badly. And my blessings might come in that cute smile that looks at me so happily every morning. But my blessings are really through knowing that that cute smile may not have ever happened. And my blessings are that Sadie can breath and doesn't have a feeding tube and is using her vision more and more daily. And the trials of this life, they really are God's mercies in disguise.

Remembering the Blessings

Usually, when people ask me how I'm doing, I can muster up an "I'm okay" even if I'm VERY borderline okay. But Monday morning my mom asked me how my day was going and I flat out said, "bad." If Sadie doesn't get teeth soon we all might have to be committed to the crazy house for lack of sleep! This is SO HARD! Sunday night was the worst. She screamed and screamed and screamed until like 1:30 in the morning when we finally pulled out the "real" drugs and put her out of her misery. I don't know how other parents do it without the drugs (for the babies, I mean)...or maybe it's not this bad if your kid is normal? I don't know. All I know is that SHE (we) needed the sleep, and giving her the drugs was the only way she was going to get it. I had an appt at the gym Monday morning to workout with the trainer (which is where I was going when I was talking to my mom), and, like usual, when I am super tired, I get super emotional...so I cried practically the whole way there. WHAT A WUSS!!!! Those of you who think I'm superwoman might change your minds if you knew how often I break down and lose it! But I sucked it up and walked into that gym with my head held high and my eyes dry...and by the time I left I was laughing and smiling. As the week has gone on, it hasn't really gotten any better. Although, now I'm administering drugs BEFORE 1:30 (waaaaaay before), so that we all can have a little more peace at night. Not to mention what the neighbors must be thinking! Brian left town Wednesday morning and won't be back until Friday, so for three days and two nights I'm pretty much on my own. But one of these days those teeth are going to come through, and Sadie's going to look like such a big girl and she's going to learn to bite and eat crackers and things. And I'm so excited about that. The other day my neighbor came over to visit. She has an almost 3 year old and an almost 1 year old and she is having a really hard time with both of them. Her older girl beats up on the younger one, and the younger one screams and cries all day (she's a feisty one!), and my friend is feeling like I've felt so. many. times...crazy house, sign me up!! But as we got to talking, she said, "I really just need to remember my blessings. There are so many people who would be VERY GREATFUL to be living my life, and I need to remember that." And that's when I told her (and she KNOWS how hard it's been for me this last year) that when I meet new people or first tell people about Sadie, I always always always focus on the positive. I tell them she's alive, and that she learned how to nurse, and now she's eating solid foods! I tell them that she is so pretty and is doing so well sleeping in her own bed in her own room. I talk about how she's working so hard to sit up and wants so badly to use her hands to put things in her mouth. And that we're raising money to get her an ipad so she can hopefully start communicating with us! I never focus on that she screams all day and won't ride in the car, and pukes if we leave her on the floor for too long. And I do this because it reminds ME of how fortunate we are, how blessed we are, how lucky we are. So, maybe once in a while it's so bad that when my mom asks how my day is going I tell her the truth. But usually, for other people, I can muster up the good in our day, because I need to remember that it's not all that bad. No matter how hard it is, we are blessed.

Blessings in Bunches

First of all, I'd like to announce that Sadie slept in her own bed in her own room last night for the first time ever all by herself!! 12 hours she spent in there without a peep...we were worried she was dead. Nope, just being a big girl!

It was a little weird at first and I had a hard time falling asleep knowing that she was on the complete other side of the house. But I have a cold and eventually I stopped listening as hard as I could to the baby monitor and just fell asleep.

I was thinking about it and I think the last time Brian and I slept without her in the room was the night we decided to unplug her and let her go. That was over a year ago!! It feels good to wake up after a night of not being concerned about tossing and turning and having a baby glued to the side of me. I'm a whole new me!

Second, Sadie had her first feeding therapy yesterday afternoon. Her goal is to just make Sadie more aware of her lips by stimulating them and causing her to realize they exist. This will hopefully lead to more babbling, sucking food off the spoon better, and eventually biting and chewing bigger pieces of food. So, she gave us this little rubber nubby thing that we're supposed to stick in Sadie's mouth and rub around her gums before she eats, as well as rub along her lips. Then she had this tiny little vibrator that she put on the outside of Sadie's mouth to stimulate awareness. As soon as our therapist left, I fed Sadie and I was amazed at how well she ate! Maybe she was starving. Or maybe all that stimulation made her want to eat. I don't know, but I did it again this morning and I had the same results.

She is also doing really well with little toddler food meltaway bites. The ones we have now are freeze-dried strawberry yogurt bites and Sadie just ate like 10 or 12 of them in one sitting, which is a lot for her! We need to get some more calories in her, so hopefully this new skill will open up the possibilities for us to do that.

Finally, we went to see the pediatrician today for Sadie's 12 month well baby checkup (I'll blog about that separately) and we had a nice quiet car trip both ways!! Plus she was a happy baby while we were there!! I'm really enjoying this big girl!

Shifting Paradigms

Yesterday I went to WalMart. Iused to love WalMart...when I lived in Eugene. But there's something about a big city that causes all the riff raff to come out of the wood-work. And they all seem to shop at WalMart. Come on, you've seen those websites of the ridiculous pictures of people taken with camera phones at WalMart. I don't go to WalMart anymore...except that the closest branch of our bank is in the WalMart that is about 2 miles away from our house. So yesterday I went to WalMart.



I don't know if it had to do with the emotions of the week and Sadie's birthday and sad memories, but I started looking at those snotty grungy low-income kids all running around their mom in the motorized wheelchair and I started grieving again for what my child isn't. The thoughts of "it's not fair" started creeping back in. But then it hit me: what in the world would that woman, who can't even walk well enough to get herself around WalMart, do with a baby like Sadie?! And all of the sudden my perspective changed. I realized that it's not about how I got the raw end of the deal, but about what Sadie got out of it.



Sadie got two parents who love her and accept her the way she is. We have the energy to deal with her irritability and her insomnia. We have the means to support ourselves and all of Sadie's needs. We have the intelligence to ask the right questions and find the right people. And we have the support of family and friends who love her even without ever meeting her (or us). All of that isn't fair either...but not in the same way.



So yeah, I still struggle a little with jealousy that my kid can't really use her hands, doesn't self feed, and is nowhere near moving independently from one place to another. But I am thankful that God gave Sadie to us and not someone who couldn't handle her or maybe wouldn't love her as much. And probably for the first time in however many years I've lived in Phoenix, I walked away from WalMart feeling satisfied with my experience there

Look on the bright side...

I am surrounded by people having babies. Again. And, while I'm happy for these people, I can't help but still think about how it should have been for me. When will this feeling go away? Maybe never.

I would never wish anything horrible, especially as horrible as I've experienced, on any of my friends. Yet I still wonder why for them everything will go as planned, or at least they'll end up with a happy healthy (non-screamy) baby in the end. Whenever I read that so-and-so had a beautiful baby boy/girl and baby and mama are both healthy, it makes me sick to my stomach all over again.

Maybe it's because recently I've been retelling our story in efforts to reach my fundraising goal for Phoenix Children's Hospital. Remembering what it felt like to have the doctors tell me my child would be "curled up" and nothing more than a vegetable is almost as hurtful as it was the first time I heard it. It actually might hurt more, I think when it happened I was in shock and didn't comprehend exactly what that meant.


It's hard to go out in public. I see children everywhere. Happy, healthy children. I see children whose parents have no idea what it's like to sit in a hospital with your brand new baby all day and then come home to sleep in a house without her. And I shouldn't know what that feels like either.

So, why me? Maybe I'll never know.

I feel this way of thinking eating at me, so what's the other side of it? On KLOVE recently the afternoon DJs have been asking people to share what horrible situations in your life has God turned around as blessings. And as I listened to a couple of these today, I found myself wishing I could be like them instead. These were people who saw the tragedy for what it was (a horrible car accident, getting kicked out of your house as a teenager, etc), but then chose to look at it the way God saw it, as an opportunity to praise Him. Why can't I be more like that?

This blog is called Beck Family Blessings, right? So, here are some of the ways our family has been blessed through this tragedy:


* I have learned SO MUCH about the world of special needs. I know how our brains work (and don't), I understand visual impairments that I never even knew existed, I know what a G-tube is, what an NG-tube is, and that I NEVER want my baby to have either. And I've met a number of really special people that I never would have come in contact with had we not had this happen to us.

* I have learned what I am made of, what my marriage is made of, and what my family is made of. We've all really had to step it up from day 1. My dad still talks of how hard it was for him to go out and meet the ambulance the night Sadie was born. My mom, who didn't have a return ticket home, stayed the ENTIRE time Sadie was in the hospital and cooked and cleaned for us. She couldn't drive at the time because her foot was in a cast, yet she completely on her own figured out how to get to and from the hospital when she wasn't able to ride with us. I went MONTHS without sleeping more than 3 hours at a time (if that), and that was with a baby attached to me. I've suffered days of screaming, and car rides of pure terror. Brian has had to live in a filthy house and do most of the chores himself as well as on his weekends get less sleep because he's helping me out and letting me get out of the house for an hour or two. It hasn't been easy, and I'm sure the hard part isn't over, but I am really sure now of how strong I can be.

* I have been able to see how much other people care about our family. When Sadie was born there were people WORLDWIDE praying for us, for her. Many of these people are still checking in (thank you Facebook) and keeping updated. And they are still praying. But the best part is that many of these people have never met our family. They know someone who knows someone or heard about it at church, and probably many of them never will meet us. That's what makes them so special.

* I am able to see how lucky we really are. Sure, our story is tragic, and there are always going to be different levels of tragedy, but there are so many that are worse than ours. I just read a lady's story very similar to ours, but when they took the breathing tube out of their baby, she died. Or even worse, Sadie could be a vegetable. She could have never learned to breastfeed and have a feeding tube surgically implanted in her belly. She could be blind and/or deaf. But she's doing really well, and by no means is she normal, but she's healthy, and she eats, and she can hear...oh boy can she hear! And she sleeps now (sorta)

Little Victories...Big Blessings

This blog was created to share with the world how our family has been blessed and continues to be blessed. So, I thought it appropriate today to share today's little blessings. (actually yesterday's)

1. Sadie slept 14 hours last night!! Well, let's start at the beginning...Sadie was pretty upset in the evening time, we think she might be pre-teething, so it was rough to get her to calm down enough to even remember that she was tired. She wouldn't nurse, so I strapped her in the bouncy chair and let it work its magic. She eventually fell asleep and I was able to stop bouncing, but that never lasts longer than 30 minutes. So, when I saw the eyes pop open, I grabbed her, wrapped her up like a little baby-burrito and I was going to stick a boob in her mouth, when her eyes just went back closed. So, I patted and held her for another half hour and since she was out, I put her in her bed. She woke up for about a half hour to eat at 4:30, and I brought her in bed with me, then she slept until 9:15!! Amazing.

2. Which brings me to swaddling. I asked in one of my previous posts recently for tips to help with napping, sleeping in general, routines and schedules, etc. Many of you mentioned swaddling. My mom has been mentioning this for over a month (sorry, mom) and I've been telling her Sadie hates to be confined, she doesn't like swaddling, blah blah blah. But, as usual...mom's right. I "accidentally" swaddled Sadie the other night when she woke up after being put in bed, while I nursed her back to sleep and I started wondering if she does like it. Turns out, it just might be my saving grace. As I type this, Sadie is swaddled, laying in bed asleep by herself and it's only 2:00!! She stayed there and took a 2 hour nap!

3. Car screaming. Since Sadie woke up so late and so happy, I decided to venture out to a LaLeche League meeting this morning. It's held at my Bradley teacher's house and I really wanted to go, but it's so hard to take Sadie anywhere because of the car screaming. Well, it took us 35 minutes to get there and Sadie didn't scream AT ALL! We tried a couple different things. I sang a specific song about car riding as we were getting ready and until we got out of our neighborhood, then I cranked the classical music. When we were about 5-10 minutes away, Sadie started whining. Not crying, but pre-crying, so I turned down the music and specifically told her "we're at the last light," or "we're gonna make 3 more turns and then we're there," or "I'm parking the car now and then I'll get you out." I also told her a lot that I understand that she's uncomfortable and doesn't like being in her car seat for so long, but that she's doing a good job and I'm so proud of her. The whining NEVER turned into a full on cry, and when I got her out, she was as happy as could be!

4. Car screaming part 2. I was worried about the ride home from the La Leche meeting because Sadie was starting to get fussy. She had been awake about an hour, and the nap had only been a 30 minute nurse-nap, so it was far from adequate. I totally expected her to scream her way home...nope. She did fuss and whine and make little scream/squeaks, but there was no crying until literally we were pulling into our driveway!! And I'm not sure that would have even happened had we not hit some construction traffic. So our ride home ended up being like 45 minutes, but she did okay and I am so proud of her!

5. I was visiting our Bradley teacher today, enjoying her La Leche meeting and she told me something she said she's been meaning to tell me. You see, we've visited some of her other Bradley classes to tell the pregnant ladies about our birth experience using Bradley and let them ask questions. And everytime, of course, it's come up that Sadie is a miracle. She's not perfect and she has special needs, but she is a miracle. Our Bradley teacher told me today that each time we've come (and it's been 3 different times now) that we've been such a blessing because each time we've left the conversation has come up about how much we love our little girl. I don't know if people expect us to reject her or be distant from her or treat her differently because of her HIE, but somehow they're surprised at how loving we are. What a blessing to hear that we're blessing OTHER people just by loving our child. ...and boy is she loved!!