Lots to be said this morning....

What you may or may not know that happens behind closed doors at the Beute house...

Having a child with special needs is the most rewarding opportunity I have ever been given.  Waking up each and every day to Sadie is waking up to a miracle...and that is no lie or exaggeration.  Every day that she does something new or even repeats something she learned the day before...is AMAZING.  We all have the opportunity to see God work and miracles everyday...some just have to look harder than others.  I am blessed to see it every day in Sadie. 

Having a child like Sadie means I have a snuggle buddy whenever I want one!  And I get LOTS of sunggle time in every day!

It also means lots of bending, lifting, carrying, holding, feeding.  As we approach cold and flu season, it means lots of "hibernating". 

Sadie was hit last week with her first cold and it hit her hard.  Sadie getting a cold is 100 times worse than the other kids.  She has a hard time handling her secreations (spit) and she doesn't swallow properly.  She will gag alot when she has a cold and even throw up pass her Nissen (the procedure she had almost a year ago that prevents her from having reflux and the ability to throw up).  All those combined can ultimately land her in the hospital and due to all of her "issues" could ultimately even take her life from us.  Sadly, also not a lie or exaggeration.

The past two weeks has been extremely difficult as I had a hysterectomy almost 2 weeks ago (everything is fine).  We were very thankful for the help and meals that were brought.  However, because of Sadie getting sick, it really thru a wrench into her care plans and I had to take over caring for her much earlier than what I should.  Lifting her, holding her, getting up/down from the floor took a physical toll on me and the healing process. 

This past Thursday I went in for my post-op follow up and was given a verbal reprimand by the doctor for "over doing it".  I just looked at the doctor and shook my head.  If she only could walk a day in my shoes and then tell me how she thought I should try "taking it easy".  I have a sick special needs child, who, ultimately could be in a life threatening situation if her illness is not treated properly (suctioning, positioning, etc) and tell me how I should just give that to someone else to take care of...???

After that appointment I went to get Sadie from school and after carrying her out of class and loading her into the car, as I was buckling her, I noticed that her feeding tube had been pulled out.  Not knowing how long this has been out, I was quite concerned as these can close up quickly...just meaning a trip to the ER.  All this and at the same time I am suppose to pick the boys up from school, prepare dinner for the inlaws to come over and get to Ryleigh's basketball game.  Get Sadie home and cannot get her replacement button (feeding tube) in.  UGH!  I call my neighbor (who is a pediatric nurse) and she came over (on the way to picking up her own kids....) and helps me pop this in.  Of course this caused Sadie discomfort and to cry out in pain and now I am crying because of all of it.  I had to call another good friend and inconvenience her to grab my boys.  Finish getting dinner ready and out the door to the basketball game.  For all those who saw my tears when I arrived...you now know why.  I felt completely incompetant to handle all of my responsibilities and the hardest thing for me to do is ask for help.

Friday I wake up and feel like I am tackling a new day. Sadie seems much healthier, I was ready and thankful to have a "do-over".  I had big plans to have lunch with a friend...that has been rescheduled too many times already and try to accomplish some much needed Christmas shopping....I know that this isn't "taking it easy", but it was going to be mentally/emotionally beneficial to me.  Got everyone up ready and out and as I pull out of the driveway I hear it...Sadie again puking...ALOT...ALL OVER.  Ok...cancel plans with friend, give Sadie a bath (which is not at all easy or comfortable with my current situation) dismantle carseat and wash from top to bottom, clean car.  Call friend to cry over my life...regain perspective and control.

The reality is; since being back from Ghana I have been inspired and motivated.  I feel God working in ways that only He can and I am excited and blessed!  I have started advocating for the Orphans...not just the Orphans...but the really special ones, like Sadie, that are so overlooked.  I feel it is a priviliage to be able to do this and just praying over the parents to find their children.  If you can add that on as a prayer request, I would love that.

Since being back from Ghana I am finding ways to get plugged in with City of Refuge and find ways to support them state side...another thing for you to add to your prayers.

Of course I am going to feel as if I am being kicked while being "down".  Does the devil not try his hardest to attack when we are posing the most danger to him?  All I will say is keep it coming!  You can try your hardest, but in case you didn't know...I have my armor on and ready for this battle.

Throughout all this past week I have endured, I still feel blessed beyond measure.  I love all my children more today than yesterday.  If I have to pick Sadie up 101 times today, I know that the Lord will give me the strength to do it.

My life certainly isn't pretty...but it is mine, it is blessed and I love it.