Special Guest Writers - EVERYBODY!

Brian's uncle, David Beck, has been an amazing outstretched hand to the community in which he lives, and the world at large, in spreading Sadie's story and asking for prayer. He emailed me this this morning and it touched my heart to read all the comments he's compiled from FaceBook from all the people who care so much about Sadie and about our family - mostly people I have never met! This is amazing to read.

When the poop hit the fan in Arizona, I found that I could put a pile of people onto Sadie thru FB, it was so special, the response so compeling, and heart felt. I compiled this special event, it wasnt all of them, didnt have enough space for all the wonderful people invested in Sadie Beck, but they know who they are. :)

No one here knows Sadie, or hardly anyone here have ever met Brian or Christie Beck but the out pouring of concern, faith, hope, and love have been overwhelming for me. You are simply people who I know daily, from high school, from business, from my childhood, from association with my children, from Facebook, and yes some of you do not know me at all, we've never met, you are a friend of a friend, your a friend on Farm Town and Farmville. Your interest and desire to be a part of this tragic drama speaks of your character, your love, your faith, your friendship. Below are a few of the comments posted that have spoken to me as this ordeal unfolded and here your hearts unfolded....

Susan Lavoie: Oh, the power in the Name above every name ~ JESUS! He is the Resurrection and the Life!

Faye Coates: I DARE anybody to say God doesn't answer prayer!! What more proof would anyone need???

Sheila Cheek Ruggles: Angels come big and small. They both have been captured in this photo. My heart has been touched wonderfully.

Cyndi Wallace Bailey: this picture brought tears to my eyes!!! so good to see this little one progressing so well! i just love these updates and continually thank God for what he is doing in this situation :-)

Leslie Caputo Sanford: Your updates bring joy to my heart. We love you Sadie!

Marilue Tate: What an amazing story!!!

Janet Gregory Moore: Praise God from whom all blessings flow! She's such a strong baby : )


Kathryn Glover Hartmann: This should be titled "A Picture Speaks a Thousand Words". Miss Sadie is absolutely adorable and looks like she is getting stronger by the day. God bless her.

Pam Chaffer Beck: Who saiys miracles don't exist anymore? My granddaughter is proving that there is. Praise God!

Kathryn Glover Hartmann: God has saved her for a purpose...so happy that this little "miracle" is defying medical logic!

Ivy Munsey Shelton: Miracles do happen! I think we all experienced one right here with Little Miss Sadie. God is great! :o)

Carolyn Jean Sullivan Payne: Thank God for this miracle.Way to go Sadie!

Leslie Caputo Sanford: This is wonderful news and brings me to tears of happiness! That's "our" Sadie... bless the little girl!

Thom Fogarty: Loving like there is no tomorrow is a mantra we couid all do better to live by. SHEER BEAUTY. Thanks BECK FAMILY.

Carolyn Jean Sullivan Payne: Sadie is beautiful!

Judy LaPorte: What a darling little girl!! What cheeks...I'd like to kiss them!!

Cyndi Wallace Bailey: so glad mom and dad are able to have baby sadie at home with them this is such precious time and i am sure is a comfort to them all. i know sadie is feeling so warm and loved! still praying for a miracle. thanks for the updates this baby and her family has been on my mind and heart every day.

Sharla Harris Cleveland: Like everyone has said, Thanks for keeping us updated.....GOD is SO AWESOME that HE is sharing this beautiful little angel not with just her family but with strangers....Your family is very Blessed and your blessing the rest of us with all these updates. Thank you & Praise GOD!

Merrie Cousins: Simply amazing...thanks for sharing such special moments...may there be many, many more!

Sharla Harris Cleveland: Like everyone has said, Thanks for keeping us updated.....GOD is SO AWESOME that HE is sharing this beautiful little angel not with just her family but with strangers....Your family is very Blessed and your blessing the rest of us with all these updates. Thank you & Praise GOD!

Diane Frisch: I am thankful for this venue of communication, and that we all can share in the joys, strengths and love of others. Near and far, we all feel the same emotions. I just wish I could be there to meet Chritie and baby Sadie. And to hold Grandma Pam when she needs that extra hug. You all are very brave for sharing your story. I am thankful. Where's the LOVE button. I am so happy you two can have her there with you and all your love. Hugs and prayers all over!!

Felecia Smith: Sounds normal and lovely

Julie Morris: She is so beautiful, still praying! Love is the greatest of all.

Rebecca Barrows:Matthew 18:14 Even so it is not the will of your Father which is in heaven, that one of these little ones should perish. Claim this promise!

Sarah Forbush Southworth: My love to the entire family. One never knows why things happen like they sometimes do. However even a short time with a child brings us the gift of the depth of our love for them; and for her, a loving parent's touch and warmth and voice and love... Be strong...

Ivy Munsey Shelton: I believe in miracles and will contimue to pray for one for Little Miss Sadie and her family.

Kathryn Glover Hartmann: Prayers for precious Sadie! She's a tough little fighter.

Faye Coates Sometimes angels just have to be tough!! Go Sadie !!!

Carolyn Jean Sullivan Payne: Praying really hard for little Sadie and her family!

Cyndi Wallace Bailey: so glad mom and dad are able to have baby sadie at home with them this is such precious time and i am sure is a comfort to them all. i know sadie is feeling so warm and loved! still praying for a miracle. thanks for the updates this baby and her family has been on my mind and heart every day.


Faye Coates: Prayers offered regularly for this little one. God has a plan for her.......and for all involved.....his witness will be known in all circumstances. :-)

Merrie Cousins: Any more good news? A miracle happening! We are cheering for you and your family...especially that adorable little girl!

Rebecca Susan Bailey Lavoie: Shalom (nothing missing, nothing broken)

Cyndi Wallace Bailey: what a beautiful little girl!!! hang in there sadie

Julie Morris: STILL PRAYING SHE HAS TOUCHED ME DEEPLY AND I BEG FOR HER HEALTH AND STRENGTH. He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
Thanks and Praise the LORD, thank you for your blessings

Rebecca Susan Bailey Lavoie: Amen Julie!!! I still believe in miracles, David! Faith is the substance of things hoped for (Heb 11:1)

Ivy Munsey Shelton: I have been thinking about Sadie and saying little prayers for her all day long. The first thing I did was check on her when I got home. This is great news!

Rebecca Susan Bailey Lavoie: Praise Jesus! She will live and declare the mighty works of the Lord! Psalms 118:17

Felecia Smith: Have been praying for Sadie all day. Will continue to pray for her and her parents. God is GREAT!!

Tammy Baldwin: Pray for Baby Sadie...Keep fighting......alot of people love you, who dont even know you..God keep her in your loving arms and help her heal......

Felecia Smith: Hallelujah

Leslie Caputo Sanford: Good news that they are spending quality, loving time with her. Prayers keep coming!

Ivy Munsey Shelton: I believe in miracles and will contimue to pray for one for Little Miss Sadie and her family.

Larry Snellings: Praying for sadie's healing right now!

Rebecca Barrows: Been praying for much of this afternoon. Will def. continue. Such beautiful baby pics. Made me cry my eyes out and don't even know them.

Robin Bowie Brown: My prayers are with you and the family-God has a bigger and better plan for your little one. Please keep the faith.

Julie Morris: I am constantly praying she is on my mind and tears have been going What are we without hope, miracles can happen and if anyone can prove doctors wrong ITS GOD

Tammy Baldwin: My god wrap his arms around them and help them through this.... lots of prayers and tears..we send our love to them all..god be with the Beck family..

Thom Fogarty: I have been moved to tears repeatedly over the last few hours since this post, having just spent the afternoon with dear friends and their 3 and 1 year olds. I have no idea how you are all holding up, but please know that there are many out here, in the seeming darkness, who care and feel for you deeply in this time of great change and learning. For we will all learn something about ourselves........for the next time we are brought to trial.

Janet Gregory Moore: God bless - praying for a miracle or, if that's not God's plan, a peaceful end to a too short life

Merrie Cousins: What a welcome relief...still offering my prayers!! My best to all!!

Patricia Hoffman: My prayers are with you and the family. What a precious precious little angel. God bless

Sheila Cheek Ruggles: Sometimes God has his hand in situations for reasons that are not obvious to the rest of us. Is this situation one to bring many people together to become one in prayer? Is it one for all of us to realize the problems we have are minute in comparison to Christie and her family's situation? I like to think that things like this happen so we can ... See Morekeep our eyes and hearts wide open to hopefully understand, be touched by the experience,grow from it and support one another. To take time to care about one another. Bless you all.

Felecia Smith: She is a beautiful baby. I'm at a loss for words right now. My prayers are with the family. May God be gentle in this time of sorrow.

Leslie Caputo Sanford :You know my prayers are with you all.. I looked at the photos you posted and she really is a beautiful little girl.

Julie Morris: Amen! Keep Praying Miracles do happen and God's will-will be done... lean not on our own understanding but on GOD. Don't be crushed David, I know I don't know her or the family but I can't get her off my mind and I know that the HOLY SPIRIT has put her there for a reason...

Marilue Tate :So so sorry for all your pain! May God Bless!

Thom Fogarty: MY LOVE TO YOU ALL.

Diane Frisch: May God hold you all in his loving embrace. My prayers are with you always~

Felecia Smith: Dear Lord, wrap your loving and protecting arms around this family. Give them all the support and faith that they need. Touch Sadie and make her whole as you would have it. Amen.

Rebecca Susan Bailey Lavoie: Sadie ~ your name means princess and describes you perfectly. You are beautiful and your life is so precious, no matter the length of days. My heart and prayers are with your family who love you so much! My eyes are filling with tears and my heart is full of compassion ...remembering a little baby I walked this path with almost 27 yrs ago.
I still believe in mirales♥

Christie Beck: Everybody kiss your babies today and thank God that you have them

Lynn White: Mother Teresa always said that she knew God would never give her a burden she could not bear - but she often wished God did not have so much faith in her. God will get you through this.

Rebecca Barrows: So sorry to hear. Sending love and prayers.

Tammy Baldwin: just wanted to check in to see how she was doing?????

Victor Pierson :So sorry to hear, David.

Diane Frisch: May God hold you all in his loving embrace. My prayers are with you always~

Kathryn Glover Hartmann: Praying for Sadie...

Martha Ann Scott Ross :prayers continue~

John Kendall Pepper Jr.: Been following a harrowing story on Facebook. The niece of a friend of a friend (and I only know the friend) just gave birth to a baby who had aspirated meconium and now has severe brain damage. The baby is unconscious and has been on life support.
Normally, babies don't have their first bowel movement until after they're born. But a certain small percentage excrete the meconium in the womb, though usually it doesn't lead to serious complications. The meconium is very thick and sticky, and if enough of it is inhaled by the baby in the womb, it can cut off the oxygen supply to the baby's brain. That appears to have happened here.
In this case, the mother had a staph infection in her umbilical cord (though she didn't have the infection herself). From what I've read on the Internet, the infection could have put the baby in distress and triggered the premature excretion of the meconium.
I poured over the photos posted by the mother on the Internet and read her narrative. After the initial enthusiasm over the birth, the mother now writes that, according to an MRI, the baby will never be able to walk and perhaps not even know who her parents are. What a terribly sad prognosis.
My heart goes out to this family of a friend of a friend. I've cried a lot over this.

Pat Ellington: I am so sorry for this sadness in your family. I have been praying for God's will in their lives. There is such sadness in any loss, but I believe it is extra hard when it is a child. I pray now for comfort and healing and peace for each of you.

Sarah Forbush Southworth: Will do! GO Sadie!

Patricia Beck: I am praying that whatever the turn out that they are comforted and having her with them even for the time they have is a blessing. It is so hard I just have to keep saying God is in control and we have to trust him. FAITH

these are just few, not excluding anyone, there are just so many, which speaks volumes of you....love to you all!!

Sadie Turns 1!!

Dear Sadie,

Today you're one. And I love you so much. I remember this day a year ago. I remember being so excited that labor was beginning. I remember Daddy being by my side and doing his best to keep me comfortable. We were so excited to meet you. We had no idea you were sick.

The past year has taught me a lot about babies, about you specifically, and about our family. You are so lucky to have a Mommy and Daddy who love you so much because you are not easy to live with! But, you're cute and when you're asleep all cuddled in my arms, it makes all the hard work worth it.

When we brought you home, we had no idea how long we'd get to keep you. But still, a year later, you continue to amaze us with what you are able to do. We didn't even know if you could breathe without assistance, but daily we get to enjoy your bright eyes, your smile, and your strong will that doesn't give up easily. We thought you'd never be able to suck or swallow, but you and I have a special bond through nursing, something I am so thankful we didn't miss out on, and even at one year old, you love to fall asleep while nursing with Mommy.

Sadie, this year we've had a lot of triumphs. We saw you smile for the first time, we've watched you get stronger at lifting your head up, we've see your first teeth pop through (finally, after some LOOOONG months of waiting!). We've rejoiced as the doctors declared that you are seizure free. We've felt relief when you started sleeping through the night. We are still excited each time you eat a meal of solid food puree, each time you suck on the sippy cup, and each time you fall asleep by yourself with the pacifier. It has been amazing watching you show us what you are able to do.

We've also had a lot of our questions answered this year. We got a diagnosis of cerebral palsy, which helped us know what we're dealing with and how to move forward and help you. We learned of your sensory processing issues and began a relationship with the bouncy chair. We defined your visual impairment and got help in how to work with your vision so that it continues to improve. We know how to help you calm down when you're screaming your head off. We know how to make you happy when you're bored. And we are getting better at helping you sleep when you are tired.

I love you so much. I love your skinny little legs that poke out your diaper. I love your perfect little belly button. I love your squishy arms and your long fingers that like to hold on while you're nursing. I love your red, curly hair that sticks out all over the place when you get out of the tub. I love your crooked nose from the breathing tube at the hospital. I love your kissable little lips that part into a perfect smile when you realize you can see something. I love your big blue eyes with your eyelashes that go on for miles it seems. I love to squeeze and pinch your cheekys, both sets. And I love your baby head.

Sadie, I can't wait to see what the next year brings, and the many after that. What kinds of things will you amaze us with this year? What kinds of things will you be able to do when you're 2? When will you stop screaming in the car?! How many more hearts will you touch this year? What kinds od opportunities will God provide to share our story and the miracle that you are?

I can't wait to see what the future holds. All good things. I can only imagine.

Love, Mommy

My first Half Marathon

I did it, I completed the Rock 'n Roll half marathon. I'm not gonna say I ran it, because I didn't, that is a whole different accomplishment. I'm just happy to finish. Why? Because that was the hardest thing I have ever done in my entire life!!

I only trained for just under 5 months, and, for that short amount of time, I think I did pretty well. I was comfortable going about 6 miles and had gone 8.5 once. My goal in the half marathon was to run to 10, then see how I feel. I made it half way.

I should have taken the immodium they offered me.

I was hungry, I was thirsty, everything hurt. And just when I didn't think I could go any further, I passed the 20K marker and knew I was less than a mile away. I knew I had to make it, and I knew I had to run across the finish line. Here's a video of me crossing the finish line.

Action Sports International

I tell ya what though, running with a group like I did was the way to go. I got coached (which if I didn't have Sadie I would have taken advantage of the group runs every weekend) and weekly encouragements in my email. There was also one of our coaches near the end who came out and walked with me to make sure I was okay and that I didn't need anything. I didn't have to pay for registration. I got to meet at the children's hospital and ride the shuttle to the race, which is a big deal because there were like 60 thousand or something runners! I got to wear a special shirt showing that I was part of a team (even though I only saw one other person from my team on the course). And at the end I got food, water and gatorade, I got a place to sit and relax, and I got a mini massage!

I cried when I finished, mostly out of pain (you can probably see the anguish on my face if you watch the video closely), but by dinner time I was only walking a little more slowly than normal, and the next day I was hardly sore. At first I thought I'd be crazy to try something like this again, but now I want to train to run the entire thing (since I have a year instead of just 5 measly months to train). I think I can do it. I learned a lot from this experience. Next year (or next time) I will:

1. Run with a buddy. I saw a lot of people who were ready to give up, but their spouse/friend/dad/etc encouraged them to keep going. I think that would really help me.

2. Bring a granola bar. I saw a lot of people munching on something as they ran. That's probably what I needed to keep me going.

3. Make sure I've RUN the whole distance at least one time before. I had no idea how long 13.1 miles actually is!!

4. Take immodium. It sounds silly, and a little bit gross, but I think my tummy would have felt better if I had.

5. Wear more dryfit or nylon. I had cotton underwear and pants on, and I was SWEATY!!

All in all it was a good experience and I'm glad I did it. Thank you everyone for supporting me with your donation. I hope more people donate next year, there were a lot of my friends who didn't give and that made me a little sad. I'm trying to get Sadie to be the poster child for the event next year. And I'm also trying to get Brian to run with me!

Our Second Radio Appearance

This morning I was on a radio show called Rivers of Faith, hosted by Donna Tyson, who is friends with Brian’s Uncle Dave. She has been following Dave’s Facebook re-posts of my updates on Sadie’s progress and development and has even visited our blog to get more information. She contacted me wanting me to share Sadie’s story to inspire and uplift other people who may be dealing with a brand new baby facing a hard diagnosis. I told her I’d love to talk about Sadie, after all, she is the biggest blessing in my life and I want to share our story with the world. This is a good start! Next stop, The Today Show?

If you would like to listen, you can find the archives here Rivers of Faith Archives

Update on Movement Therapy

Sadie has been going to Movement Therapy every week through the month of December, and starting back up now that we're back from our holiday break. We really like Michelle.

Today Michelle's partner, Diane, was there also. Diane is a vision specialist and worked for The Foundation for Blind Children for many years. Diane has really noticed a change (for the better) in Sadie's vision and works a lot with her when she's there. However, today, Sadie was tired, I suspect her mouth hurt, and all this resulted in BIG grumpy pants!

We stood Sadie up for a while and worked with her vertical instead of horizontal, that seemed to make her happy for a little while. She even played with one of Michelle's fun toys that if you push buttons they make noise, play songs, and light up (I really want to get Sadie something like this).


Then we took a nap break. When Sadie woke up (after about 15 minutes) I showed Diane and Michelle our trick.

When Sadie first wakes up she will lay on her tummy and lift her head, turn it from side to side, look at stuff, even push with her arms, and sometimes roll herself onto her back when she's done. But we can ONLY do this when she first wakes up, so often this is what I do with her when I am making her some food (because she usually eats as soon as she wakes up too!). Both women were really impressed with this.

While we were there I asked if it's more beneficial for Sadie to come weekly like we have been, or to do an "intensive" session every couple of months. An intensive is like 2 appts a day for 4 or 5 days in a row. Michelle said now that she's seen both with another client, she sees MUCH more improvement in a shorter amount of time with he intensive schedule. So, we won't see Michelle until President's Day weekend. We will see her at 9am and 3pm Friday-Monday.

If you are interested in knowing more about Michelle and her business, you can visit her website here. Movement Lesson

UPDATE THE NEXT DAY: Last night I had a dream that Sadie started pushing herself into crawling position after seeing Michelle for an intensive. Maybe this dream is just an indication of what's in my heart.

TEEEEETH!!

Today Sadie needed to suck. This is not unusual. It's actually pretty funny because she'll lose her latch when nursing, but she won't stop sucking. She will continue to suck on nothing for another 20-30 seconds. Normally I will just laugh at her and wait for her to finish, maybe pull on her cheek a little, but today I didn't have the patience (thanks to a couple of students who used it up), so I just stuck my finger in her mouth. And then I felt it...

A tooth.

Immediately I texted and emailed everyone I know. I posted on facebook, and I started forming this blog post in my mind. We've only been waiting for these teeth for 8 months!! It's strange though, I always expected the left one to come first, but that right one snuck up on me and broke the surface before I even realized it was there! I guess it's like a watched pot...a watched tooth doesn't cut through.

Now that it's after 8:00pm, and she is screaming her head off and won't sleep, it's not so exciting anymore. My prediction is that the left one will break the surface by the close of business tomorrow. And Brian is leaving town at 7:00 in the morning...overnight. And I see a big bowl of crazy in my future. Tonight we've administered orajel and Tylenol and I'm just praying they kick in SOON!!

And then I'm sure by the time my best friend gets in to town, Brian comes home, and my mom arrives all the drama will be over. At least they'll get to enjoy all the cuteness that comes with those two bottom teeth and a mouth full of gums!

Also, for those of you keeping track of the poop situation, we finally got things moving down there. It wasn't pretty when it started coming out, it was like every other diaper was a blowout! But, we got her cleaned out and now she's more regular. And even though we don't like changing poopy diapers, we're REEEAAAALLLY happy that she's going!

Zahira

Sadie spent her first day with Zahira today, our new respite care provider. She is great. I can tell she loves Sadie. She bounced her for a LONG time, she was able to feed her (usually I'm the only one who is successful at this), she took her for a long walk, and she played with her and sang to her. She is great. We really lucked out getting somebody so amazing on the first try.


I just hope she'll stay with us for a long time.