Celebrating Kobe and everything UNKNOWN!

Today is a day of CELEBRATION!!

Kobe turns 11!! If you are a person who acknowledges "Golden Birthdays"...then this would be his.

We don't so much get into that, but Kobe does think it is pretty awesome that he is 11 on the 11th today!

What a an amazing blessing it has been to be his mom...I know most moms say this about their children...but really, truly, deeply I am so thankful God chose US to be his parents!

This time of year is significant not just for Kobe's birthday, but in 3 days from today, we also acknowledge Kobe's "Gotcha Day"...the day he came to live his life with us. In 3 days we celebrate Kobe being in our family for 10 years!!

I want to share some of Kobe's story with you today.

Let's first start with adoption, since Kobe was our first adoption. We (both Nick and I) always knew adoption was in our future. It was made clear to us that God intended for us to adopt sooner verses later (which was our plan).

Throughout this journey of adoption, God was nearly at times audible in His direction and making His plan clear.  Even more so when we first learned about Kobe.

A fundraiser was being held for our adoption, a garage sale. It was the last day of the sale and it was a dreary rainy day. I ended up leaving half way into the day with Ryleigh as well as my friends children and brought them to our house for lunch and naps. Well, needless to say, lunch was barely fed and naps were skipped.

If you are affiliated with Bethany Christian Services, you know about their LifeLines Magazine. It normally is published and mailed out every quarter. I love getting this...I still do to this day! I love reading about the children that have come home, equally as much as reading about the children waiting for their forever families to find them. They would write up a little blurb about waiting children...ones with special needs. Bethany referred to them as "Children of Promise".

Pulling into my house, I grabbed the mail and was surprised to see a LifeLines Magazine in my mailbox. "Weird", I thought to myself. I recalled just getting one the month previous.

 I had learned later that this was a special edition due to the large amount of waiting children with special needs.  This edition ONLY had children waiting for their FOREVER FAMILIES.

Carefully reading about each, not one grabbed my heart...until I turned to the very last page and saw him.  "Elliot".  No, Elliot was not his name, nor was it ever.  It was just a name that Bethany used to make him more "identifiable" should anyone inquire.

When I saw him...I KNEW.  I just KNEW!  If you have adopted children...you know exactly what I am talking about.  I immediately called our caseworker and confirmed; yes..he was from Korea, yes...he was still available.  When learning more about him in conversation with our caseworker, we learned that Kobe was born at 32 weeks and has a diagnosis of Cerebral Palsy.  Despite learning of his "diagnosis", I never once wavered at my first thought....MY SON!  MY SON! 

How perfect was God's plan that day...the day He brought the rain, that led me home, to a special edition LifeLines...to MY SON.  His sweet sweet Perfect Plan.

Kobe came with many unknowns.  We could not know how significant or severe his Cerebral Palsy would be...certainly not until we got him home...or maybe for years down the road.  What we knew back then was that we could offer him the world in medical care and love to make him the best Kobe God intended him to be.

Upon arriving home, Kobe was given an MRI and our doctor was very careful in his wording.  Kobe has abnormalities to his brain, consistent with those who have CP...but has zero CP tendencies.  Perfectly healthy, age appropriate, on target boy.

Today Kobe is an amazing student, a phenomenal athlete, a loyal friend, a deeply loving son and brother, but most importantly a committed Child of God.  We have always said we will never be surprised if Kobe grows up to be a pastor.  His love and knowledge of Jesus and his Heavenly Father is one we should all want to have.

Kobe has told us many times that he has three moms.  He has his birth mom, his foster mom and of course, me.  He also has three dads...he has his birth father, his dad (Nick) and his Heavenly Father.

So this time of year we love to celebrate Kobe!!  We love to celebrate the years of his LIFE that his birth mom so unselfishly gave to US!!  We will always be thankful!!

So, why now did I feel the need to share all of this back story with you?

I know MANY of you that read this have adoption in your hearts.  I have shared our journey with Sadie and all of the crazy unknowns we have with her (and will continue to have) but how God has been so faithful to us in all ways.  And you know now that Kobe too came full of question marks.  But even then, God never left us.  Our journey to Kobe and our life after is one full of amazing blessings, despite all of the unknowns he had.

Yesterday I was contacted by our caseworker on this very special girl.  For a moment we were considering.   We are open to growing our family, however, not at the cost of compromising Sadie's care.  This sweet unborn child (with lots of unknowns) would need more than what we could give at this time with Sadie.  But, as a good friend of mine put it this morning "CHURCH!  This IS where the rubber meets the road".  We are called to care for, love, nurture, provide for this baby.  I can talk scary unknowns with you until I am blue in the face.  I live it.  every.single.day.  But, I can tell you more miracles, amazement, awesomeness, love, provision..... 

Please read, please pray, please do!  This is an urgent case!

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thank·ful [thangk-fuhl]

thank·ful

/ˈθæŋkfəl/ Show Spelled [thangk-fuhl]

adjective

feeling or expressing gratitude; appreciative.

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Finding the correct way to say Thank You is generally difficult for me.  Quite often I want to re-pay someone to show my thankfulness.  Other times I want to come up with some insane words to convey the depth of my emotions.

 

But, finding a way to say Thank You to an entire COMMUNITY I am finding difficult.  I am struggling to keep up with Thank You cards.  We kept a list going and I was good at staying on top of it...for a bit....Then the list got longer, and longer and I found myself getting further and further behind. 

 

For those who don't follow on Facebook, Sadie had an incredible journey starting in July (July 24th to be exact) of us going into ER for what I had thought (or maybe just hoped) would be a virus, to finding quickly that her shunt had failed.  It over drained her ventricles causing a collapse in her brain.  We were inpatient for 2 weeks and a day with bilateral drains for subderal hematomas and then a shunt revision.  We were discharged and went to Mary Free Bed Rehabilitation Hospital for an week of intense Physical, Occupational and Speech.  6 short hours after returning home from Mary Free Bed, we found ourselves back in ER with Sadie having a 104 temperature.  Her shunt had become infected.  The course of treatment was having her shunt externalized and IV antibiotics.  Once the infection cleared, she had a new shunt from top to bottom put in.  After another 3 weeks and 5 days in ICU, we were home!  That was 7 weeks of hospitalization.

 

Today Sadie is better than ever!!  She is back to doling out her smiles and spreading the joy that only she can.

 

Just another testimony to the miracle God created her to be.  What a blessing.  She is such an inspiration to us.

 

So, heavy on my heart are the long over due Thank Yous I really want to get to, but just cannot begin to cover everyone, as it was an entire community that carried us.  From our family and friends to church, school, people I have met only on facebook , our immediate community we live in and those surrounding.

 

Our other children were loved on and cared for, meals were brought, gift cards given, prayers said, songs sang, bible verses read, vigils held, blankets made, lawn mowed, weeds pulled, house cleaned, laundry washed, practices made, lessons given, visits made, flowers sent, balloons recieved, even tuition assisted.  Many of these acts of unbelievable kindness were done by anonymous people and people we do not even know.  For each and every single one, we can only say, THANK YOU.

 

Romans 1; 8 "First, I thank my God through Jesus Christ for ALL of you, because your faith is being reported all over the world."

We pray that each of you know just what a blessing you are to our family.  We are so very thankful.

 

 

 

An Opportunity for YOU to help

There are times that I write blog entries and leave it sit in "draft" form while I think and pray at times over what I wrote.  Seldom do I just type and hit "publish".  I have been sitting on parts of this blog entry, wondering what was appropriate to share...maybe more importantly WHEN would it be appropriate to share.  So, I feel now is the right time.

Written a few weeks ago:

So the purpose of reviving this blog months ago was to update people on Sadie as well as journal our days of raising a child with special needs. The good...the bad....the scary and the blessings!

This blog has given me the opportunity to share the struggles, our fears and our celebrations with so many! It has also brought people into our lives with similar stories, which is very encouraging to us! It has also allowed me to successfully advocate for some pretty special kids in Ghana waiting for their forever families to find them.

It has been an outlet for me working thru some feelings, emotions and stressful situations (better than therapy). It has been a source crazy support from people literally around the world.

It has come at a cost of some negative feedback, but what is put down here is nothing but truth. It is my opinion that if you don't like what is written here, choose not to read it.

After Sadie came home, we felt certain that she is the child that completed our family. The kids would ask if we thought we would ever adopt again or WHEN we would adopt again. My answer at first was a quick "NO WAY. We are good! Our family is COMPLETE"!

As time passed the question would come up from the kids and I would find myself saying "We never say no to God. If God is directing us towards adopting again, we can't say no...but I pray every day that He things we are good". Ryleigh's response "Well, then I will pray that we aren't done and ask Him to tell you to adopt again!"

Going back to my time in Ghana in November, I have said that that trip was life changing and I know I blogged about parts of that. It was healing for me, personally, on so many levels. I believe that trip also healed my heart and softened it a bit to the notion of adopting again.

A few months ago we were given the awesome opportunity to pursue the adoption of a sweet sweet girl in Ghana. She had some "special needs", however, now that we have Sadie, we look at special needs in a very different light. Her "special needs" actually were correctable and we were in l-o-v-e. Wheels were in motion and forms were completed and homestudy update was underway.

There were some hurdles along the way as we got things rolling. However, we prayed about each one and God made the path clear. Sadly, about a month or so ago we got word that an MRI confirmed that her "condition" was actually much worse than what they had initially thought. The choice to stop the process of this adoption was agonizing. Devastating really. If you have adopted or were ever matched with a child, you know the pain I am talking about. We are thankful that we had made the decision early on to keep this adoption on the "down low" until we got to a certain point in the process. Our kids didn't even know. They know about her, but think she is a child we have committed to praying for...not knowing that we were praying for her as if she was ours.

We DO believe that God opened up this relationship with ourselves and this special girl for a purpose, and now we know why.  We are to continue to advocate for her, but in a different way than we had first thought.

We learned recently that this sweet girl has a diagnosis of Myelomeningocele.

Email this page to a friend Printer-friendly versionMyelomeningocele is a birth defect in which the backbone and spinal canal do not close before birth. The condition is a type of spina bifida.

Spina bifida occulta, a condition in which the bones of the spine do not close but the spinal cord and meninges remain in place and skin usually covers the defect.

Meningoceles, a condition where the tissue covering the spinal cord sticks out of the spinal defect but the spinal cord remains in place.

In the United States, most children born with this would require surgery as early as within the first 24-48 hours of birth.  If not, extreme precautions are taken in caring for the child to not increase the risks associated with this condition, even as far as meningitis or other spinal infections.

This sweet girl was found in her village with people all around her...naked.  She had wounds so deep in her skin and so infected that months later she is still taken to a clinic DAILY for dressing changes. How her condition was not worse, or infected to the point of causing death is a pure miracle.

Her birth mother had passed days before she was found and no one in her family was willing/able to take on her care.  Praise God for putting the people in place to bring her to House of Mercy.

Here is a picture of on the day the found her and one taken just this past April.

Me, writing TODAY!

So, here is how you can help.

She needs surgery.  Soon.  The cost for this is $5,000 USD.  It is the decision of House of Mercy to not move forward with surgery until all funds have been raised.

There are two ways you can give!  Give now by clicking the paypal button on the top right of this screen and making a secure donation online.


Or you can mail a check to make a tax deductible donation to West African Mercy Ministries at;

WAMM
 953 Meadowview Lane
Mukwonago, WI 53149
Phone: (262) 347-7172

Friends, we have seen first hand how amazing it is when a community comes together to care for one another in the Princess Sadie Chariot Fund.  We are praying that we can find 1,000 people who hear her story, see her need and will give $5.00 to help care for her.

This sweet girls name is CHRISTABLE.  And just like her name CHRIST is ABLE.

Please contact me if you have ANY questions.  I am very close with the Directors in her care.

Thank you for caring enough to give to for this girl!!

The special life of special needs...

I have said before just how excited I get for Sadie to come home.

Crazy excited!  My relationship with Sadie is very different from the other kids.  Not more special, but just different.  I believe it is because she will always depend on me for her care.  She will always need me.  Because of that, I always worry about her. I think that is partly why I look forward to her coming home each day.  Today was no different.

3:00 was approaching and my count down to 3:10 was underway.

One thing I look forward is the notes from Sadie's teacher in her folder.  Each morning I will write to Sadie's teachers and share with them anything that happened that evening or morning that may affect her day today.  Each day they write me back letting me know what special things they did or what therapies she had that day.  Today was no different.  The note was this;

"Sadie did have a good day.  She was vocal today.  I would make a sound and then she would make it back.  Borculo Christian School's band played for us."

So, of course I was excited to see if Sadie would do some back/forth imitating sound with me!

And she did....

.....and I may have teared up a bit. 

Then I read another note sent home as well.  This one was informing us that a class mate of Sadie's passed away.  And I may have teared up a bit....ok....alot.

This is reality.

These children's lives are SO much more fragile than those of my other kids' classmates.  Her life (Sadie's) is that much more delicate than our other kids.  Some of my scariest times are when she has seizures.  Will THIS seizure be the one that could ultimately take her from us?  Oh the winter months!  Fearful that the cold she has may turn into something much worse.  Or scared that the formula, that she at times throws up, she will aspirate on and cause bacterial pneumonia.   My biggest fear....losing her.

I cannot imagine the grief that this mother is dealing with right now. 

With Sadie we constantly remember to live for the here and now...we find pure JOY in the baby steps as the one shown to you here....but the frailty of her life and those of her classmates are always close to heart...even closer today.

Hug your babies tight and always look for the simple things that are miraculous.  Don't take one single moment for granted...and say some prayers for the mom's grieving today.

Update....just to update!

This post may be coming at you only because I am avoiding the pile of laundry sitting just a few feet away from me.  I lost my motivation for today and think if I am at least doing SOMETHING (like updating the blog) then I am being successful at accomplishing at least one thing today!

This week marks the first week of all day-every day school for Sadie!

School has been going so amazingly well for her!  I have noticed that on the days that she was going all day, when she got home we would have the entire evening of alertness and engaging activity with her.  She is very happy when she comes home.  I figure it is her telling us that she is just SO happy to be home...or that she had such a good day, that she is still so happy (choosing to believe the second option). 

After trying for weeks to maintain the schedule of pulling her out of school to do therapy at Mary Free Bed, I realized it was too much for her.  We tried for three weeks and each week she would just crash in the car to therapy and we could not wake her.  As much as I wanted to finish that process out there, her therapist and I agreed, school was probably the best place for her. 

The days are quite different with her gone and I am still getting use to that.  I literally count down the minutes to 3:10 (when she gets off the bus).  I get excited at 3:00, as I know she will be home soon.  I miss her terribly!

Some of you had heard that we recently had a trip to Florida and I will share a bit of that with you.

We were recently very blessed with an opportunity to go to Disney.  This trip has been months in the planning and we had kept it very quiet for a few reasons.

This was a "wish trip" for Sadie. This trip was provided to us by an amazing organization in Michigan called the Rainbow Connection.  When we were told that Sadie was eligible for a Wish, we were surprised as we thought wishes were granted to children with terminal illness...However, that is not true.  Wishes are granted to children with life threatening conditions, which Sadie actually has several.  Wishes are granted not just for the child...but for the child's family.

Back in January we met with the Wish Coordinator from Rainbow Connection...we had no expectations and were basically open to what she thought would be best for Sadie's wish.  We had no ideas.  When she presented the Disney idea to us, we first said no.  It was too much and the thought of traveling that far away with Sadie seemed overwhelming to me.  However, the more she spoke about it, and the accommodations that would/could be made for Sadie, the more possible the idea seemed.

When we were considering this opportunity, our thoughts were on all our kids...how amazing they have been. How amazing they ARE. Our thoughts were on Sadie. She has endured more than any adult should in a life time in her three short years. Our thoughts were on us...just how much we needed a break. Our thoughts were on our FAMILY and an opportunity to spend time away from our everyday "normal" lives...with no influences of family, friends, neighbors, community...just us.

We were blessed to stay at an amazing organization called Give Kids the World, which is a place that only children with "wishes" could stay.  There was no embarrassment with pulling out Sadie's feeding supplies and tube feeding here where ever/whenever.  There was no heads turning at us when Sadie was making her noises.  There were so so many families there that were just like us.  It wasn't pitying looks or silly/naive/ignorant comments.  We were able to just be.

We spent a week eating breakfast, lunch and dinner together.  A week of people just loving not only on Sadie, but Ryleigh, Kobe and Nathan too!  A week building a lifetime of happy memories together.  No therapy, no doctors, no AFO's, work...just us.

As I said in a previous post, I aspire to take more pictures and we have HUNDREDS from this week!!  I will next hopefully be able to actually DO something with them and create a photo album!

 

 

THIS JUST IN!!!  As I am typing this we FINALLY got the call that Sadie's Wheel Chair has been DELIVERED!! WOOOO HOOOO!!  I should be getting a call SOON from Mary Free Bed to get fitted for her seat and she will be rollin'!

 

And in other news;  come this fall you may see me rollin' in this!  As all kids are in school, it has left me wondering what I will do now?  A bit ago the school our kids go to (Allendale Christian) was looking to hire a new bus driver.  For those who know me, I have actually said that I aspired to be a bus driver.  But thought it an unattainable dream.  Dreams do come true!  I am taking my driving test next week Thursday (say some prayers please...).  This opportunity was just another answer to prayer for us.  It is hard to figure out "work" with Sadie. I desire to work and our financial situation could also stand the help.  However, it is hard to commit to a 9-5 job, as she does have alot of appointments.  Then we also have to consider summer vacation, Christmas break and spring break daycare issues.  It is too much to expect Ryleigh watch all the kids on her own.  So, this is an opportunity to work (for a place we LOVE) and have the same schedule as my kids and allow me the day time to make all of Sadie's appointments.  WIN-WIN!

 

 

 

And for more exciting things coming up....We are SUPER OVER THE MOON excited that in June Johnbull and Stacey Omorefe and three of their kids will be coming and staying with us!!  This is our Ghana family!  Johnbull and Stacey are the amazing couple that started and run City of Refuge Ministry in Ghana and said YES to taking care of our precious Sadie from when she left the hospital until we came to take her home.  While they are here, we will be hosting a Feast for Freedom and you will all have the opportunity to be treated to an authentic Ghanaian meal and hear more about their ministry and ways that YOU (yes, Y-O-U) can even get involved!!  More on this to come....

 





Birthdays, Braids and MORE!

Everything has been plunking away as peaceful as can be over the past few weeks.  So enjoying this!

Here are some big updates;

First; April 1 was Sadie's 3rd BIRTHDAY!!!  We had a great time of celebrating up north with presents and shared cake and icecream with friends up there.  Sadly, I purchased a candle...but didn't bring it with us and no...not one single picture was taken.  Nothing to document this big occasion.  I feel horrible. I aspire to be better at taking pictures.  Really.

Second; Sadie got her first set of yarn braids!  I am in LOVE!  Seriously, I never thought she could possibly be any cuter.  I was wrong.  SO ADORABLE!

A great friend took her for a day during spring break so we could have a day of "big kid fun".  When I dropped off, short hair...when I picked up LONG!  Crazy!  It makes her look SO OLD but I totally love it!  Kobe thinks she looks like Prince Fielder.  I will let you decide!

 

 

Third; Sadie started school this week!  EEEEEEEEK!  Seriously!  We are so blessed to live where we do.  Just a few miles from our house we have an amazing school, the Ottawa Area Center, that is only for children with development (and physical) special needs.  We have been receiving services from them for Sadie since she came home.  They have an infant program where they come up to twice a week and provide Physical Therapy, Occupational Therapy and Speech Therapy.  That goes until they are 30 months old.  At 30 months they move on to "group" therapy, where Sadie has been going twice a week for the past 6 months.  But when they turn 3 they start going to school!  Sadie is going every day! The bus comes and picks her up at about 8:45.  We are thankfully the last pick up and the first to be brought home after school since we live so close.  We are in process of finishing up our Physical Therapy at Mary Free Bed and still in Oral Therapy  as well, so three days a week I pick her up from school and bring her to those appointments in the afternoons.  So Mondays and Fridays are her only two full days at this point.  Yesterday just felt weird all day.  Nick stayed home in the morning to see her get picked up.  I will be honest and admit that I wept. Alot. There is just alot of emotions that go into having a special needs child and the fears you have when they aren't with you.  I know that this will be another "new normal" for us.  I kept very busy during the day yesterday with breakfast with friends, appointments, errands, a surprise of flowers at my door (THANK YOU!!!) Sadie's teacher was great and called me twice yesterday just to tell me how well everything was going.  I know we will see so many changes in Sadie with this.  She was very wound up last night, I believe overstimulated and it caused her to have some issues in the evening with keeping her night time feeding down.  It's just an adjustment for all . But, I was a big girl today and no tears when I put her on the bus! ;)  Here is a picture of my sweet Sadie waiting for the bus on her first day...(see I said I aspired to take more pictures...)

 

 

 

Fourth; Another big update;  I said goodbye to this :(

 

 

And this weekend we will be saying HELLO to this! :)

 

 

We have learned SO MUCH about Wheelchair Accessible Vans.   Something I never thought we would ever need knowledge of! But, we felt strongly that obviously we needed to find something that fit Sadie's needs...but one that also fit our families needs!  Seldom do we go away without having 1+ friends along with us.  So, after lots of searching we found a van that fit all our needs (and may just barely fit in the garage too!)  If any of my old youth group students are reading this right now, driving a van like this feels like deja vu to me!  Oh MEMORIES!  So, no more driving around town incognito!  I now have a church bus....with a ramp! :)  LOUD AND PROUD!

 

But seriously, with all these changes, we continue to feel just so humbled and thankful.  We are so thankful for all those who surround us with their love and support!

 

Sadie's Chariot Fund has been a unique experience for us.  We are actually looking into making Sadie's Chariot Fund an official grant program to assist other families, like us, make their wheel chair accessible van purchase a little easier.  Purchasing a van like this is not easy and it is hard to articulate.  But each step in the world of special needs almost takes time of acceptance and at times mourning.  The purchase of a vehicle like this is huge (financially, emotionally and mentally).  We are praying we can put something in place where we can make a part of that easier for families...the way our friends, families, strangers...all those who participated in this for us, did.

 











Get Involved in the BIG 10!!

So, if you are from "around here", I am sure you know of Aspen Computers!  They are an awesome local business in Allendale that has been "hosting" a donation box for Sadie's Chariot Fund. 

When we went to pick up the boxes March 1st, Ross, the owner, refused to return our box.  He felt that more money could be raised.  Bless his heart.

Unbeknownst to us, he started a March Madness Bracket Pool where a portion of the proceeds will go into Sadie's Chariot Fund. 

Here is the link to the website to get involved in this;

http://aspenmadness.hoops.sportsfan.com/

Aspen Computers provides awesome service for computer repair and also has a variety of new/refurbished computers and other electronics available for sale.  The service is quick and very fairly priced!  Great honest business man!!

Ross- We are SO thankful for what you are doing for Sadie and for us! 

Good Luck Pool Players!!

NO LIMITS and HIGH EXPECTATIONS!

We are careful most times how we talk about Sadie. It quite often depends on who we are talking with or to.  I want to always be careful that we don't sound too wishy-washy or too dreamy about what we hope she will do or become.  I want make sure that people know that we live in today and have realistic expectations.  However, I also don't want to sound as if I am cutting Sadie short on what her abilities may be.

Where is this going?  I'll start with last week.

Sadie goes to Physical Therapy twice a week at Mary Free Bed.  Last week Wednesday she also had an Oral Therapy Evaluation to see if she could start Oral Therapy. 

Just a "refresher"; Sadie was taken off all foods and can have NOTHING orally since December 2011.  She has what is called a "partial swallow" and that is when she swallows half of  her food goes to her stomach and will be metabolized "normally", where the other half was going into her lungs.  At that time, this would happen and Sadie would never even cough to try to get it out.  This was "normal" for her.  Sadly, it should have also killed her before she even made it to the states.  One of her "miracles", as the doctors say, that she didn't get bacterial pneumonia in Africa and passed from it.

Sadie's Oral Eval consisted me holding my breath while watching a therapist put some vanilla pudding on Sadie's tongue and watch how she responded to it.  You can see that Sadie was very curious about it....and enjoyed getting more!  The one thing I missed when we took her ability to eat orally away, we noticed a loss of her tracking items.  She would eye the spoon and follow with her eyes and by turning her head.  Her losing the ability to eat, took more than just that away from us.  But, she had her eye on the vanilla pudding and was not letting it out of her sight.  We were both very pleased that we watched her taste and swallow the pudding! This does not mean she will be eating steak or pizza soon...or ever...but it IS a step in the right direction! 

Fast forward to today...first Oral Therapy session and Sadie was reaching/grabbing the therapists hands when she was letting her taste the yogurt...she wanted more!  She also got her first taste of a sucker.  REAL USA candy. She may be hooked. This has opened a new world of rediscovering taste. We can't wait to watch and experience this with her!

On that same day of Sadie's Oral Eval I was playing with her that afternoon.  One thing we (Sadie, the therapists and us) have been working on hard is Sit to Stand. This is not Sadie pulling herself up to a standing position, but rather us helping her stand from a seated position. As she gets older this will be a valuable tool for us transferring her from on seat to another.  She is quickly learning to master this as well!  Sadie's head continues to be very heavy for her and a source of weakness.  So, to master the weight baring on legs, with the muscles of the torso as well as head/neck control takes a lot!!  I wanted to share what we accomplished last Wednesday.

 

 

There is a family that we know that we get alot of encouragement from.  Their amazing daughter was born with Cerebral Palsy.  They have told us stories of how people treated her and the appalling advice people would give to them. I can ask real questions to them. I don't want to sound like I am living in a land where Sadie will grow to be "normal" and healthy.  However, I never want to short change her by giving her limits either or lacking in expectations.  I was told by this mom "Don't you EVER set limits!".  This amazing family had others in their family tell them that their daughter would do nothing.  That there was no hope for her.  Their daughter, this AMAZING woman, has inspired Nick and I in SO MANY WAYS!  Not only can she communicate, she does so in more than one language!  She has more college education than majority of the people we know! She has traveled to other countries telling others about God's love.  She is a walking witness.  She writes...she is one of the most amazing writers.  We were very surprised when we got our monthly edition of "Rusk Crumbs", a newsletter put out in our church with updates of all the going ons...and this amazing woman wrote about our Sadie.  I hope you can read it here.

 

I e-mailed her this morning to thank her for writing such a wonderful article.  In an e-mail she sent back she stated the following,

 

"Sometimes, I too, feel so lonely and misunderstood in my life, and I have to keep reminding myself "It's not about you, girl; it's about God and His glory. "Not to us, O Lord, Not to us...but to Your name..."

Christ in us, the hope of glory...

 

All that....from a girl that long ago, people said would not do anything.

 

So, the sad news for Sadie is that she will just have to be working THAT much harder....for not only do we have NO LIMITS set for her, we also have HIGH EXPECTATIONS!!

 

Sadie's Chariot Fundraiser has come to an amazing end!  I am going to keep you in anticipation just  a bit longer.  My great friend, Marissa, will be announcing the total with some of her insights, and I think that all needs to be shared together.  She will update the facebook event page I am certain, and I will probably cut and paste what she wrote here.

 

 

Lots of Processing!

So, life is about to change.  And where you may think these changes are really no big thing...the closer we get to them, the more we realize that these are HUGE and SIGNIFICANT changes!

I'll start with van shopping;

Nick and I went out and looked at our first Wheel Chair Accessible van.  This is unavoidable.  It is something we have to do.  It is not necessarily a choice, but something that our current family situation "mandates" for us.  And maybe that is why I so badly want to reject it.  In the past I use to LOVE car shopping.  Seriously LOVED it.  I remember at times Nick and I would just drive thru car lots for fun.  People who know me, know I have gone thru my fair share of cars too. 

This definitely had a different "feel" about it.  It wasn't like buying our current SUV, where we were excited because our family was growing and we needed something bigger to accommodate it.  Or the SUV before that...the one I was SO excited to get because I felt like we "graduated" out of our Minivan!  Or the Minivan that I was really excited to get because our family was growing again and that is what I needed.  A step up from my car.  Nope, was more a feeling of this is what we HAVE to do, because this is what our life is about.  And not that this is bad, but it's just different. 

We hate the fact that finding a van (any size...mini van or full size) that can seat MORE than 6 is hard to come by.  We are making NO ANNOUNCEMENT that we are expanding our family.  But, it does make you feel locked down to a number or "finality" with only having room for 6...our current family size.  Or even going away with our kids' friends...can't do it. It sounds ridiculous that we have to contemplate taking two cars if we ever grow our family or have a friend come with us anywhere.

I was over the moon excited yesterday when we found a full size van that use to be a 15 passenger that had been modified with a lift.  This thing still had seating for 11 + a wheelchair and lift!!  It looked PERFECT online!  The price was spot on in a range we could manage.  So, despite the "cloud" over us of having to make such a purchase or go shop for this item, we were very excited about this find.

What a let down when we got there to only find that it was trashed.  Just junk on the inside.  It was clear within minutes that this was not a vehicle for us.  We drove home with little words.  We talked a bit about expectations for a van.  But, overall the car ride home was pretty silent.  I think both Nick and I coming to and understanding that this will be a very expensive purchase...that we don't really want to have to do.


Today was our tour of Sadie's school.  In April, after spring break, Sadie will be going to Ottawa Area Center for school.  WOW.  This is an entire different thing to adjust to.  Never did I send any of our other kids to school at 3 years old.  Let alone but them on the bus.  Our older kids today hate riding the bus.  Why would I want to put my 3 year old on a bus.  However, everyone I talk to has told me that this is best for her.  I have to remember that she isn't "normal" and therefore requires us to be out of the box (dare I say "abnormal") in our thinking.  So, I will be sending my sweet baby girl at 3 years old, in her wheelchair, on a bus to school everyday.  Seriously, tearing up as I type this now.

Ottawa Area Center...is AMAZING.  Truly.  All the staff that they have is awesome!  Nearly every one we came across already knew Sadie. They have a pool! She will go swimming every Friday! They have gym every Tuesday.  They have Licorice...a mechanical horse that she will ride.  All the tools that they have for her and the programs that they have that she will do...I can't wait to watch her grow and develop even more!  But, you know what else is AMAZING?  DeVos Children's Hospital.  But nobody WANTS to bring their kids there.  So even though we have this AMAZING resource available to us, we don't get excited about going there or bringing our child there.  Nobody wants to say "Someday my child gets to go to OAISD!".  I guess I was not expecting to feel the emotions I did when I was walking thru there.  Parts of me were looking at all the other kids and thinking, "That's not Sadie"...but reality is, yes, that is Sadie (yup, more tears).

That is when I have to remind myself that God made Sadie by His perfect design and plan and therefore, she IS perfect.

I think some of this is also scary because for the past 18 months my identity has changed from being the working mom of three awesome kids to stay at home, special needs mom of  4 kids (all still awesome!).  As I was walking around the school today I found myself asking if mom's ever volunteer here.  My mind is already wondering what I am going to do when Sadie is in school.  I have never been "alone".  I don't desire it.  I don't like it.  I don't want it.  When I was expressing to the teacher (with Nick there) I said I just can't quite figure out what I will do when she's at school and I hear Nick behind me "how bout take a break".  But when I spend 13 hours a day (mostly holding or in physical contact with her in someway) I feel like I am almost loosing an extension of myself...an appendage.  How do you let go? I know it will be good for me.  It's good for her.  It will allow me to be more involved at ACS and volunteering there and being available for the other kids.  I will still have the twins for the rest of this year a few days a week....and it is only 1/2 days for Sadie to start.  My time will be filled quickly.  Just hard to wrap my mind around.

So, lots of changes coming up.  Lots of changes coming all at one time.  Lots of "processing" going on.  Lots of things to accept. 

Prayers would be great!!

Fundraiser update!

As we are winding down on the month of February the fundraiser winds down as well.  This has been an amazing experience and we are so blessed by all of the support we have received (not just financially, but all of the cards and encouragement as well).  I have not looked recently and am going to refrain from looking until March 1st. So, I will update you all with final totals on March 1! :)  We would love that if you haven't "shared" the event on facebook or the link to this blog, to please consider doing so!  Otherwise, Sadie's Chariot Fundraiser Event Page will be updated with the Grand Total on March 1 as well as the blog here!!

Getting past the "WAH!! the BLAH!!! and the @#**$&!!"

Last night, when I first sat down and started this post, it went a little something like this;

WAH!!!!

 

AND

BLAH!!!

 

 

Then I sat down this morning and felt refreshed; renewed.

 

All the kids were up and getting ready for school.  I fed Sadie and gave her her morning meds (all 9 of them).  All the kids very orderly got their stuff on while I ran upstairs.  They got themselves in the car (when I say "all kids" and "themselves", I am referring to Ryleigh, Kobe, Nathan and the 3 year old twins I watch a few days a week).  While I am upstairs I hear it again...that awful sound of Sadie coughing...turning to wreching...turning to puking. 

 

My new post wanted to start something like this;

 

&*%#@!!!

 

AND

 

^%$)#(@*#$$()%*$!!!

 

 

Instead, I am choosing to start with this;

 

"Give yourself fully to the adventure of today.  Walk boldly along the path of Life, relying on your ever-present Companion.  You have every reason to be confident because My Presence accompanies you all the days of your life-and onward to eternity.....Fix your eyes on Me, the Author and Perfecter of your faith, and many difficulties on the road ahead will vanish before you reach them.....remember that I am holding you by your right hand.  Nothing can separate you from My Presence!" - Jesus Calling, Sarah Young.

 

I could sit here and write to you all the frustrations I have felt and experienced this week.  I could tell you how badly my feelings have been hurt by total strangers and list all the frustrations I have with people who I thought "got it" when it came to Sadie.  (well, I guess I did just tell you a bit about it, but I will spare you intimate details). 

 

What I will share with you is that I feel like I dipped my toe into the water of discontent and it took all but a half a second for the devil to grab me by my ankle and before I knew it, I was waist deep.  Isn't that just how the devil works?  He has plagued many of my thoughts this week and fought hard to take away my joys.  He is sneaky like that and how quickly it snowballed.  It was ugly.  I was snappy at the kids and Nick.  I felt physically tired.  I was frustrated at just about everybody and just-plain-tired...of everything.

 

I know I have to allow myself "moments".  The grieving process of special needs is life long.  There are constant reminders of mile stones that have not been, and probably will not be met.  There are looks and comments from friends and strangers that sting. There is almost constant worry...about EVERYTHING.  I have been told by many that those "moments" are ok to have and have been told that they are "healthy", but instead of giving the devil my toe, I need to remember to put those to prayer.  I have reached out to a few friends as well to pray for me during these moments.  Because I am such a stubborn independent person, I like to think that I am big enough to handle these "moments", but really, in those moments I think is when I need to be big enough to ask for help.

 

I also need to keep in the forefront the positives and those are the things I DO want to share with you, in detail!

 

Yesterday we reviewed Sadie's goals in therapy and the therapist agrees that she has met and exceeded each goal!!  Just reminds me that our work with her pays off.  I think sometimes people wonder what I do all day with her (even Nick) and what you may not realize is...we work.  We stretch muscles and joints (especially ankles, knees and hips). We work on head control, neck strength and trunk control like there is no tomorrow. 

 

Sadie continues to play peek-a-boo with us, which just makes my heart soar!  Such an infant game to play, I know, but such a HUGE testimony to some cognitive understanding!

 

She is forward facing in the car now and LOVES it!  I will admit it is very distracting to me driving when she and I are "jamming" to the music way loud.  I love to watch her smile to the music.  I get teary eyed each time.  It will never get old.

 

Ryleigh, Kobe and Nate all came home with amazing report cards a few weeks ago.  I nearly cried over Parent/Teacher Conferences last night. Our kids have the most amazing teachers, backed by the most wonderful school. Truly blessed and thankful they are there.  Not only am I thankful for the academic process by all, but reading the report Kobe's teacher gave us about Kobe's "hero".  Kobe wrote all about the reasons why Jesus was his hero.  And Ryleigh's teacher talking about the growth in confidence Ryleigh has had so far this year (and we see it too) and Nathan's teacher talking about his bright personality and how he is loved by his class.  

 

How could I have ALL of this, and dare allow myself feel angry about anything else?? 

 

You will probably never hear me say that today was an "easy" day....as truthfully, there is not one day for us that is "easy".  But, I will say that each day is full of blessings...if you choose to look and listen for them.  It is easy to point out all the crap.  That is what the devil wants us to do....But I urge you to look past the crap you will find an abundance of overflowing blessings and THAT is where our focus needs to stay!!

Fundraiser Update!!

 

Today is the official 1/2 way mark!

 

Here are some fun/interesting facts:

 

As far as we can tell, donations have come from 23 different cities within Michigan!  24 different states within the US! 4 Different countries in the WORLD!!

 

Sadie's story has been viewed/read over 10,300 times and in 10 different countries!

 

Over 9,000 people have been "invited" via Facebook to participate in this "event"!

 

We are blown away by the fact that today you all have helped raise; $5,474.62!!!

 

You are AMAZING!! 

 

Please, feel free to share Sadie's story with any you feel may benefit from hearing it!!

 

http://www.beutebunch.blogspot.com/2013/01/online-donation-for-sadies-chariot.html

 



Happy Feeding Tube Awareness Week!!

Let's CELEBRATE!!

We are nearing the one year "anniversary" of Sadie having her feeding tube.  Crazy, right...that I remember this as an "anniversary".  Not really something to celebrate, but hardly something I can forget.

I do think it funny how out of all the things going "on" with Sadie, her feeding tube always seems to be the top of discussion with other people (family, friends and complete strangers).  I have more people ask me if she always be tube fed, or if she will ever eat "normal".  Sometimes I am taken aback by that question.  The sarcastic part of me wants to point out that there is little "normal" about Sadie in the first place, so to us, the feeding tube seems natural.  Maybe because we are a society that focuses so much on food and eating that that is why it seems to be so important to others that she eats orally.

Ironically, this morning we were suppose to go in for her Oral Eval to see if she could start Oral Therapy, but can thank the weather AGAIN for postponing this.  We have rescheduled/cancelled/rescheduled this appointment 5 times due to hospitalization, illness or snow days.  I am only do the Eval because I feel I owe it to Sadie to give her every opportunity to be "normal", however, if she cannot start the program, I am good with that. Again, this is how God made her and intended her to be, so even though to many she is not "normal"...to us, she is PERFECT!

Oral Therapy is not a joke.  It is EXTREMELY intense and takes a VERY long time.  It is a very slow process.  In the past, Sadie has not been able to participate in this due to her muscle weakness in her neck.  Although there has been lots of improvement in this area, there is still a long way to go.  Her prognosis at being successful is therapy is also unknown.  Babies who HAVE eaten orally before statistically are more successful at oral therapy.  However, although Sadie was eating orally at one point, she was doing it wrong...so, that throws statistics out the window.

Where at one point I literally mourned the loss of her eating orally, today I have embraced it.  Before I thought it was such a huge loss of developmental progress, today I know it is what keeps her ALIVE! 

When Sadie came home to us at 18 months old, she weighed 18 pounds. We learned that she was aspirating on everything we tried to feed to her.  Half of what she ate was metabolized and processed correctly, and the other half went straight to her lungs and risked giving her bacterial pneumonia.  Any medication that we gave her was almost always thrown up minutes later, so very much not effective and she was always near dehydration (even after coming home).  This feeding tube not only gives us peace of mind that she is hydrated, medicated and accounted for HUGE weight gain and healthy growth...it gave her LIFE! So, not only have we embraced her feeding tube, we LOVE IT!  Yup...I did this to her...

For Feeding Tube Awareness Week, I would like to challenge all of you to learn how to tube feed!  No joke.  It may seem scary, because it's different.  But it's not...at all!

Do a loved a favor and learn how to care for their special child so that you can offer respite as a gift to them!!  Do not be held back due to a feeding tube!!  At 10 1/2 years old Ryleigh mastered it and now at 10 1/2 Kobe is begging to learn! 

The Princess Sadie's Chariot Fundraiser continues....Thanks to MANY of you, $4,856.57 has been raised so far!! A-M-A-Z-I-N-G!!


If you are still looking to donate; click here for more information on that!

http://www.beutebunch.blogspot.com/2013/01/online-donation-for-sadies-chariot.html

Oh!  You like Sadie's Tubie Whoobie?  That is the ADORABLE heart around her feeding tube....go on facebook and search Tubie Whoobie.  They are AWESOME!! They make GREAT gifts (hint....hint) for kids with feeding tubes.  Not only do they help make something that to some appears scary....cute, but they also keep the stoma dry and clean...which is very important.

So, in recap....

HAPPY FEEDING TUBE AWARENESS WEEK!

Him...seeking ME!!

So, yesterday, I put my facebook status as this;

"When I got up this morning I started thinking that this was "it" the start of probably the busiest month...ever. Starting today every Monday and Wednesday Sadie has at least 2 appointments, some days going from Holland to Grand Rapids, most going into Grand Rapids not once, but twice. Not at ALL fun as toting a child with low/no muscle tone + winter coat + carseat is just a combination that does... not work and would make you just cancel all appointments and stay home. Jesus Calling this morning: "Come to me and rest. I am all about you, to bless and restore. Breathe Me in with each breath. The way just ahead of you is very steep. Slow down and cling tightly to My hand. I am teaching you a difficult lesson, learned only by hardship". AMEN!"

Sometimes I say that there was too much "special needs" in one day for me.  Some days are easy and I love it...other days are more challenging.  As of late, I am feeling the PHYSICAL tole on my body as Sadie is getting bigger. 

My day yesterday was one of the "tougher" ones as a special needs mom.  Got the big kids all off to school, came home and tried my best to clean up the house before the Children's Special Health Nurse stopped in for her annual visit.  Before she came, I had to feed Sadie and of course, spilled formula all over her.  Clean her up and got her dressed just as the nurse was coming in.  The visit with the nurse was for an hour.  An entire hour where all we focus all on what is "wrong" with my daughter.  The highlight was when the nurse (who was the same who visited us last year) pointed out that I seemed in a much better "place" than last year.  All I can think was; "So, it was THAT obvious how much I was struggling last year...shoot, thought I did a better job covering that up".

Sadie has therapy at Mary Free Bed on Wednesday afternoons. So, I bundle her up, drive to Grand Rapids, unload/pop up stroller, load baby, unload for therapy, do therapy for an hour, rebundle, decide against reloading the stroller, carry baby, push stroller, load all back up, and then race back home so that the boys are home for only a few minutes alone. 

Get home now 45 minutes past "feeding" time for Sadie and needing her 4:00 meds.  Ryleigh has to be picked up in 15 minutes from volleyball, have homework for the boys and need to leave very soon to go talk to an adoption group at a church a fair distance away. Breathe!

I have been struggling with migraines almost daily for the past week.  These start as tension from my back/shoulders from how I have to lift/carry Sadie.  As I am driving home from therapy,  I am feeling physicall ill from my headache and all I can think is how badly I really WANT to cancel speaking at the church (can you say Devil working....)

PRAISE for a friend calling back to grab Ryleigh for me!  PRAISE for an awesome dinner provided by someone from church!

Eat, change, leave.

Go to a great church that has an Adoption/Orphan Ministry (LOVE IT!!!!) and talk to that group! SUCCESS!!! LOVE sharing Sadie's story!

Get home, EXHAUSTED. I voice to Nick that I need a "mom break".  Like a REAL one.  Like a leave home for a weekend, don't look back, know everyone is good and I can relax weekend. 

Go to bed.

Sadie is up at 2:30, so I got about 4 1/2 - 5 ish hours of sleep before I get back up and ready to do it all over again today.  By 4:30 this morning, I have the laundry done, dishes done, showered and just sat down to read Jesus Calling for today, February 7.

"Come to Me for Rest and refreshment.  The journey has been too much for you, and your are bone-weary.  Do not be ashamed of your exhaustion.  Instead, see it as an opportunity for Me to take charge of your life.  Remember that I can fit into a pattern for good, including the things you wish were different.  Start with where you are at this point in time and space, accepting that this is where I intend you to be.  You will get through today one step, one moment at a time.  Your main responsibility is to remain attentive to Me, letting Me guide you through the many choices along your pathway.  This sounds like an easy assignment, but it is not.  Your desire to live in My presence goes again the grain of the world, the flesh, and the devil.  Much of your weariness results from your constant battle against these opponents. However, you are on the path of My choosing, so do not give up!  Hope in Me, for you will again praise Me for the help of My presence".

I love how direct God is with us.  How individual and specific He is! If you think about ALL of His children, all who He loves and cares for, and how somehow He is still able to take time to talk directly to Me?  Oh how He loves me!

My prayer is that all of you, hear our Heavenly Father speaking so clearly and directly to you TODAY...EVERYDAY!

Update on the Movement (formerly known as the fundraiser);

Total amount of people "attending" (according to Facebook): 460
Total amount of people "invited" (according to Facebook): 9,082
Total amount of people who have visited this blog in ONE WEEK: 3,845
Total raised in one week (as of this morning): $4,432.45

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!

If you are looking to donate to Sadie's Chariot Fund, click on this link for directions on that;
http://www.beutebunch.blogspot.com/2013/01/online-donation-for-sadies-chariot.html

 

HAPPILY OVERWHELMED

I am overwhelmed with a feeling of complete and total gratitude and thankfulness today.  It has become almost debilitating.  As I sit today and play and stretch and exercise and snuggle our Life Changer (Princess Sadie) I am overwhelmed with emotions of the love people have shown to her thru this unbelievable fundraiser.  I feel like all I can do is go on my knees and thank God for each Angel he has sent to us in this way.

It is hard to even call it a "fundraiser" at this point, as I feel it has become so much more than that!

It has brought people from all over the WORLD together to care for one of HIS precious children!

This "event" as brought orphan awareness to the forefront for some of you.  This "event" has brought awareness of not just the trials, but the BLESSINGS of special needs to the attention of so many!

This "event" has brought business owners from our little community out to find ways that they can get involved!

This "event" has shown YOUNG and the not-so-young, that you don't have to give ALOT to make a HUGE difference to some!  You just have to GIVE.

My awesome and very talented neighbor and friend is coming along side us with her business and created a specific hair bow for this fundraiser that you can order and a portion of the proceeds will go into the Chariot Fundraiser!  Please see the link here to her facebook page on how to order I hope to see MANY sporting the Princess Bow!

https://www.facebook.com/#!/pages/Abbies-Bow-Creations/318753401424


Of course you can still donate online thru Paypal

Or donating thru our bank is also still an option! Checks can be written to Sarah Butterfield or Audrey Beute and mailed to;

Chemical Bank
5980 Lake Michigan Dr.
Allendale, MI 49401
Attn: Conni/Sadie's Chariot Fund
Please indicate it is for Princess Sadie's Chariot Fund in the memo line.

As I watch the numbers grow (and I am not talking the money, but the numbers of people "going" to this even and the people being INVITED) I just get so excited!  I am excited for what others will be shown and what all will see.  God at work!  Praying that the current 8,128 people "invited" will not just decline the invite, but read the stories and listen to the way God maybe talking to them!  I am praying that ALL are touched by the tangible way God is showing His love for ALL of us!!

As I stated earlier today on Facebook, my husband can hardly stand all the "goodness" that is going on.  Very hard for any of us to be on the receiving end at times, but I think harder for a man.  This morning I told you that we were well past $1,000 and at this point I can tell you that we have BLOWN by $2,000 and are nearing close to $3,000....Unbelievable....all that and still 27 days in February to go.  Sadly, I think we did put God in a box and set limits on Him when this fundraiser started. My friend, Jen, said it correctly this morning that she wrote "I think The Lord just kind of chuckled when you dreamed up 4,000 people by the end of February! I see him flexing in a way that triples that # in 4 days. Oh that we might all see His pursuit of us through Sadie's story!"

And to share a piece of Sadie's goodness with you all....for those I am not facebook friends with, Sadie had a week in the hospital a few weeks ago.  This was just a precious moment she and I had shared together.  The story behind it is that Nick always says he is Sadie's best friend....the proof is in the pudding, we ALL know now, who is REALLY her best friend.  Sorry Nick! ;)

Online Donation for Sadie's Chariot

Nick and I are truly humbled and completely blown away by the amount of support shown and given to us thus far. We are barely 12 hours into this fundraiser!!  Seriously people...you are AMAZING!


For those who are interested in donating to Sadie's Chariot Fund, I have created a link to make a donation via paypal!  Simply hit the "donate" button below and it will safely and securely take you where you need to go.

Donating thru our bank is also still an option!  Checks can be written to Sarah Butterfield or Audrey Beute and mailed to;

Chemical Bank
5980 Lake Michigan Dr.
Allendale, MI 49401
Attn: Conni/Sadie's Chariot Fund
Please indicate it is for Princess Sadie's Chariot Fund in the memo line.

Please feel free to share on your facebook, blogs, etc!