Wednesday, February 20, 2013

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 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 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 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!!

Thursday, February 14, 2013

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;


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;
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" 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!!

Monday, February 11, 2013

Happy Feeding Tube Awareness Week!!


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" 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, 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 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 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!

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....


Thursday, February 7, 2013

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


If you are looking to donate to Sadie's Chariot Fund, click on this link for directions on that;


Friday, February 1, 2013


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!!/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! ;)