Ryan House Run 2013

2 years ago I participated in the Ryan House Run 10K with a couple of my co-workers.  Unfortunately, last year, I was pregnant and didn't feel like I could do it.  But this year I signed up for the 5K, to walk. I am nowhere near being able to run 3.4 miles yet.

And then I got this idea to bring Sadie with me.  So, with my friends, we walked 3.4 miles and Sadie joined us.

I think Sadie really enjoyed it.  So much so that I think we might be doing a few more "races" together this year.  As I begin project fit-in-my-clothes-again (we're going on a small vacation in May and I realized I couldn't wear sweatpants the whole time!), I am going to try to do my Couch to 5K during the week, and take Sadie on long 5K walks on either Saturday or Sunday.

We had a good time and we liked seeing our friends!

Christmas at Ryan House

Yesterday we went to see Santa.  And we also visited Lily.  Both of them were at Ryan House, both of them lit up the room they were in.

Ryan House had a Christmas party for all the kids who take advantage of their respite facilities.  There were kids zipping around in power wheelchairs, climbing on the playground, and sitting in their wheelchairs next to their parents.  We saw people we haven't seen in a long time, and reconnected with people we haven't seen in an even longer time. 

Santa held both of my children and told me what a blessing each of them is.  And I thanked him, while admiring the glitter in his (real) beard.  He was obviously not your average rent-a-Santa, he had a special heart, and a twinkle in his eye.

But while all of this was happening, while children were laughing and playing and taking home toys, Lily was just down the hall fighting for her life and losing terribly.

You see, Lily has bone cancer, and she's on hospice care.  She is at Ryan House to die.  Knowing this, made visiting Santa yesterday bittersweet.

I am so thankful for Ryan House and all the things they do.  For Santa and playgrounds and reuniting me with old friends.  For making me feel normal with my tube-fed, non-verbal, physically handicapped child.  But, I am also thankful for Ryan House because they are making Lily's last days enjoyable with tea parties and art projects.  They are giving her mother, my friend Alicia, help and rest that she so desparately needs. 

And that's what Christmas giving is really all about.

Swimming at Ryan House

I started feeling really guilty yesterday about leaving Sadie at Ryan House. I wonder if she understands where she is, why she's there, that we're coming back, etc. I mean, she's not like a normal kid, who you can explain these things to (whether they totally get it or not). I have no idea what she comprehends! I just didn't want her to feel abandoned.

So, I went and visited her today and took her swimming.

When I got there she had just woken up and the nurse was working on changing her and getting her ready for the day. She was so happy to see me, she just kept smiling and she was cooing at me!! We put her in her swimsuit and headed for the pool.

At the pool they had this floaty that goes around her neck. I've always wanted to try one of these things, but never had the chance. I was a little nervous that her head would slip right through the hole, but it didn't. And soon Sadie and I got more comfortable with it.

She quickly figured out how to kick her little legs and she could swing her body from front to back. She was ALL OVER that pool! I basically had to just chase her around! I think she loved the independence this thing offered her most of all. She had so much fun.

I think she's having a good time at Ryan House. I mean, nobody has called me this time in a panic! They said she's been sleeping at night, and despite that "witching hour" from 4:30-6:00 where they can't get her to stop crying, she's been pretty happy! I definitely felt less guilty after visiting her there. They take good care of her, and she enjoys being around other people, I think. I'm so glad that we tried it again and that this time we had a much better experience.

All clean after her swim and a bath, and in the wagon ready to go back to her room!!

One more night and she comes home!

Ryan House...take 2

Today we brought Sadie to Ryan House, where she's going to stay for the next 3 nights. Last time we tried staying at Ryan House was almost a year ago and, if you remember, it didn't go as well as we'd hoped. (read about that here) But Sadie is bigger now and much more independent, so we're hoping it'll be a more pleasant experience this time.

Ryan House is a respite facility where children with special needs, and their families, can come stay. It's like a resort for special needs kids... in fact, we've dubbed it "Club Spesh." It really is an amazing place full of caring people who WANT to be there taking care of our kid. And there are so many cool toys and things to play with, what kid wouldn't want to go there???

But 3 nights away from my little girl is unprecedented. I have never been away from her even for 24 hours. So, this is kind of a big deal. While I was excited to have a break, I was also really nervous.

Dropping her off went well. They asked me if I had any goals for her while she's there, I told them I just wanted her to be happy. That's reasonable, right? We brought her back to the light/bubble pole and immediately she was happy...just like last time!! We stayed for about an hour and a half, and then we left her in completely capable hands.

On the way home, we realized we could go do whatever we wanted...we didn't have to go home!! So, we went and looked at new cars. Then we spent a quiet evening not rocking, not worrying about puke, not fighting Sadie to go to sleep.

Here's hoping we don't get a call in the middle of the night!

Feeding tubing it at Ryan House

We're getting ready to take Sadie to Ryan House again.  We drop her off on Sunday and she's going to stay for the whole week!  Originally, we had plans to leave town on a little vacation, but that's not going to work out.  It's spring break for me, and I plan on enjoying the break with a little stay-cation at home...while someone else changes Sadie's diapers, tube feeds her, and entertains her all day.

I am one of those people who wants to always make it as easy as possible when preparing someone to be my substitute.  I was this way when I taught swimming lessons (my boss always praised my instructions when I had to have someone teach my class), I was this way with my classroom (preparing for a sub was always more work than just teaching my classes myself!), and I'm this way with Sadie going to Ryan House.  I mean, they're already dealing with children there who can't talk, eat, walk, etc...why make it harder by leaving them a guessing game???

The biggest thing is preparing them for Sadie's eating schedule.  Because Sadie is tube-fed, and because we no longer use the formula recommended by her doctor, it's important that I obsess about control every ounce of liquid and every calorie that goes into my little girl.  The doctor claims that that formula (you know, the one that is full of artificial sugars and chemical vitamins) is "complete nutrition" so I feel like it's up to me to prove that I can provide my child complete nutrition using real food...even if it goes through the tube.

Usually, we blend up some yummy stuff for Sadie and that lasts her a couple of days before we have to blend up some more stuff.  At home, we mix in some oral feedings too, but for Ryan House, I'm gonna make it as simple as possible and stick with the tube feeds only.  So, how do I make sure she has a week's worth of yummy food without using formula?

Freeze it.

This is the genius idea I came up with this week:

Make Sadie's food like I normally would (usually it's about 32 ounces), pour that blended goodness into a freezer bag with the zip lock top, then lay it flat in the freezer to harden.  Then we'll have 5 or 6 flat freezer bags full of food that they can just take out the night before, put in the fridge to defrost, then pour into her Nalgene we use to hold her tube food for the day.

I figured this was a better idea than sending fresh food and the blender over there!!!

And now I'm off to start blending!!

Sadie's visit at Ryan House

I was so excited about going to Ryan House with Sadie when we got home from Seattle. When we toured it looked like the perfect place with a quiet room, games, sensory toys, a pool, and a bathtub with jets!! But what was even more appealing was that someone else would be taking care of my baby and I would be able to take a break. Especially with Brian gone for 4 more days, this was a big deal.

When we got there, it was a little harder to release control than I thought it'd be. It was important that Sadie got a certain amount of food and liquid each day, and this had to be administered a certain way and at a certain time, or the chance would be gone. It was also important that Sadie got a certain amount of sleep each day, and if it didn't happen, everyone was bound to pay the price. People don't understand that...even people who are USED to working with special needs children. Sadie is a ticking time bomb, ready to explode at any moment if: something smells funny, she wakes up too early, she stays asleep too long, she doesn't eat right when she wakes up, she doesn't get her nap RIGHT when she's tired, you make her work too hard, you overstimulate her, it's too loud while she sleeps, or if her mouth hurts. So, I felt like I needed to be constantly looking over their shoulders reminding them that "it's time for..." or "you should take the opportunity to...right now."

We got there in the afternoon, and on into the evening everything went well. They ask that a parent stays the night that first 24 hours just to oversee and make sure everything goes well. So, Sadie took a nap right when we got there. She woke up and we fed her dinner. There was "drinking" and a bath and jammies and putting her to bed was relatively easy. The night nurses encouraged me to go down the hall to my "parent suite" and relax, they had everything take care of. I graded some papers and went to sleep early. But at 3:00, someone came and knocked on my door. Sadie had been awake for 3 hours and they couldn't get her back to sleep, can I come help? She just needed Mama (and the Tylenol they had given her just before they came to get me), and within 10 minutes I had her asleep and I was headed back down to my room. I wasn't frustrated or angry that they came to get me, it was actually a little relieving! I'm so used to doing that every night that it felt weird not to!

The next day went pretty well. I was able to mostly be independent, but check on her frequently. She had one tiredness meltdown where I couldn't even get her to sleep, so I walked away and asked the nurses to take care of it. I mean, I wasn't going to get all stressed out when this was supposed to be a break for me, and I had all that help just standing around (Sadie was the only kid staying at Ryan House that day). They finally got her to go out...by doing what I told them they should do. Unfortunately, the night staff wasn't there for that.

Sadie had a great day after her 3 hour nap though! (yes, she was THAT tired) She played in the sensory room looking at the bubble lights and the mirror, she bounced on the ball and listened to some music, and she even went swimming! I went to run an errand, and when I got back they were just getting ready to be done swimming and take a bath. And again, bedtime was easy! She had had a stimulating afternoon and she was pretty tired. As soon as she was asleep, I packed up and went home for the night.

It was a little weird to be home all by myself. No Brian. No Sadie. It felt indulgent, and I liked it. I went to bed early after eating breakfast for dinner (something I never get when Brian's home!) and I was sound asleep when my phone rang at 1:00 in the morning. The night nurses (the same ones who had been there the night before) were calling to tell me that Sadie had been awake since about 8:30 and they were really sorry to bother me, but they just didn't know what else to do. They wanted to know if I had any suggestions. I told them her teeth probably hurt and they needed to wrap her like a burrito and rock her. But when I hung up the phone, I couldn't go back to sleep. I didn't know if I should go down there and put Sadie back to sleep, I didn't know if I should bring her home, I felt guilty for leaving her there in the first place when she obviously wasn't ready to be away from me all night. Brian was in Seattle, but I texted him because I needed some support. I finally decided to call Ryan House back at 2:00am and see if she was still awake. If she was, I was going to get in the car, if she was asleep, I was just going to leave her. But I had decided that instead of her staying another night there, I should just bring her home. Even though Brian would be gone another night, it would be less stressful to just have Sadie at home, than worry about her somewhere else.

The next morning I called and spoke with the head nurse. I told her of my decision to bring Sadie home that afternoon (I was too behind on work to get her in the morning) and she was very supportive. She agreed that maybe Sadie is just too young to stay away from me. Plus she understood that she has specific needs that I know best, and how to take care of best. She reminded me that this was a good experience for us and that they are available if there ever comes a time when we HAVE to leave Sadie. She told me their goal is respite care for the family and if neither I nor Sadie was getting a relaxing, restful break, then it wasn't worth it for us to stay.

They are so nice there, and they have such a nice place that I wish we could have stayed longer and I wish it had worked out better. But it's okay, we tried something new. It was a pretty safe way to learn that Sadie really does need either Brian or me to sleep at night, and she's really not ready to be away from us for a long period of time. I have no regrets about our experience there. We have a HIGH MAINTENANCE baby and she is a lot of work! But she does best at home with me and somehow we figure it out everyday how to get things done and still have time to enjoy ourselves.

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.

Ryan House

Once in a while something comes along and blows.my.mind. This weekend it was Ryan House.

We are part of the Hospice Outreach program since when we first brought Sadie home we had hospice services in place. And once a month or every other month (I can't keep track) a woman named Pam comes to visit us and check in on how we're all doing. She was the first one who mentioned Ryan House to me. It's a place where families with special needs children can leave their child overnight to be taken care so they can get a break, go on vacation, etc.

At the time I just dismissed the idea because Sadie wouldn't take a bottle and nursing meant she was attached to me pretty much all day and all night. But now that Sadie's older, and I've learned more about Ryan House, I finally agreed to go tour.

From the moment we walked in the door we felt welcome. We had a hard time finding the parking lot, and the lady who opened the door for us told us exactly what to do about parking next time. Then we met our "tour guide" who first showed us the "wall of fame." It was a bulletin board with pictures of many of the kids who had stayed there. We even recognized a few of them. Then a nurse came toward us with a little kid in a stroller that we know from Foundation for Blind Children, so that was fun to see someone we know there.

The first room we saw was a parent/family suite. The first time your child stays there they ask that parents/families also stay just so the staff can become familiar with your child's routines and likes and dislikes and so that you're there to answer any questions. But they encourage you to relax and play and not worry about taking care of your child...that's what they're for. And anytime Sadie goes to stay there, we can stay too if we want...or we can leave town for a long weekend to celebrate our anniversary! I'm thinking next time Brian goes out of town for a couple of days for work, Sadie and I are headed to Ryan House!

From there we got a look at the children's rooms, the bath-room (literally where they have this giant bathtub with jets and self-regulating temperature, it's awesome), the laundry room, and the computer lab, where we can skype with Sadie while we're away if we want!! They also have a sensory room full of fun toys and equipment that Sadie would love. There is a vibrating table, a wall full of what looks like a lava-lamp sort of, and this projector that projects an image onto the floor, but then you can interact with the images by stepping/rolling on the mat, or waving over it. There's a craft room, and a pool, and even a quiet living room where someone can go just to chill out and read (that's where I'd be going to do work while I'm there!). There is a little garden outdoors where you can sit and enjoy the weather (in the winter), and a playground with a structure that has wheelchair/stroller ramps and bumpies to roll over! This place was amazing.

Because we qualify for respite care at Ryan House, we get 28 nights a year to stay there for free. There is some paperwork, of course, to fill out before we come, but I definitely think we'll be staying there soon! Stay tuned for more news about this!