Saturday, February 28, 2015

Our Arrival

There is so much to share from our Magic Moments/Give Kids the World (GKTW) vacation that I don't even know where to start.  How about from the very beginning...
Our friends from Magic Moments met us at the Birmingham Airport on Valentines' Day to send us on our way in style.  Yes, we left to go to the happiest place on earth on Valentine's Day, not too bad, huh?  Magic Moments (www.magicmoments.org) is the organization that sent us on this trip of a lifetime and Give Kids the World Village is the place we stayed at in Kissimmee, FL.  Sophie Kate was given a little Mickey Mouse and some glow sticks and bracelets for all the parades and nighttime shows we would be attending on our trip.  The boys were given a bag of snacks and candy for the trip thus kicking off a week of over indulugence (in a good way) like we could have never imagined.

On the plane, Sophie Kate was fussed over by the flight attendants of course.  And in true SK fashion, she did better than I did on the flight over and let's just leave it at that.  We were then met at the Orlando airport by a sweet lady holding this sign...
Yeah, we were feeling kind of like celebrities at this point. She took us to get our luggage, took us to our rental van and then made sure we had our directions to Give Kids the World Village.  Once we made it to the village, our children received even more welcome gifts and then we were taken to our villa.

Our villa was just beautiful and fit our family of 6 perfectly. It backed up to a lake and was on a quiet little street just around the corner within walking distance from all the fun stuff.  Magic Moments ordered all the medical equipment and supplies Sophie Kate would need for the week and they delivered it all to our villa.  The only things we brought with us, medically speaking where the things we needed for her on the plane and her medicines.  When I say we were completely taken care of, it doesn't even begin to describe it.

We arrived at GKTW around 4:00 on Saturday, Feb. 14, so after unloading we spent the rest of the evening exploring. We played Putt Putt golf, in which Sophie Kate proceeded to beat all of us unmercilessly.  Of course, everything and everywhere at the Village is completely accomodating and accessibile for wheelchairs.
We had dinner at the Gingerbread House, where would be having many meals during our stay.  
Cooper and Jacob even got involved in some of the games that evening. We found out very quickly that there is always something going on at the Village.
Their cup stacking skillz came in handy.

I went to a parent meeting that night where my mind was blown even further.  We received tickets to Walt Disney World, Universal Orlando and Seaworld Orlando.  In addition, we received a special pass for all three parks that only GKTW families receive.  Those passes gave us access to a once in a lifetime trip.  

As special as this trip was for our family and y'all all know how much I love Disney, equally special was the time we spent at GKTW.  The village is run mainly by voluteers. The actual employees we saw paled in comparison to the huge amounts of volunteers.  These folks made us feel so special during our stay.  Give Kids the World Village was started by Henry Landwirth, who is a survivor of Auschwitz concentration camp.  Please go to their website (www.gktw.org) and read about his story and how his vision for the Village has grown into the amazing place it is today for special needs children and their families. 

Well, that was our arrival day.  It was packed full and set the stage for an unforgettable week of suprises, experiences and memories.  

Here is a small glimpse into our week at the parks...





Y'all know I will give each day its due.  I am going to have so much fun reliving this trip through pictures with you. Thanks for continuing to share in this journey with our family...it's gonna be fun!

Saturday, February 21, 2015

Where we've been...

We have just returned from a week long vacation at this place...


I cannot wait to share all of the details of our Give Kids the World trip, but at the moment I am finding it all so much to process myself.  It was a once in a lifetime experience for our family.  There were so many memories made and so many neat things we were able to experience together.  I will get to them all, but for now we are trying to deal with the harsh reality of returning to normal life, haha.

Sooo much more coming soon!


Wednesday, February 4, 2015

A New Nurse

I have the neatest story to share with y'all about how we met Sophie Kate's new nurse.  We still have our nurse and friend Kelly, who has been with us for 4 years now, it's just that we have been approved for more nursing hours than one person can work.  We have been looking for a new nurse since September and all along I have consistently said, "I know God already has this special person picked out for us we are just really ready to meet her."  And that's the really cool part...how we came into each other's lives.

Every December our church hosts a dinner for families in our area.  It's a special time of eating, presents and getting to know new folks.   In December 2013,  our family did not get to participate because Sophie Kate was so sick. However, all of us were back together and well this past December and able to participate.  In the course of talking to the family we were sitting with, I shared with the mother that we were currently looking for a nurse to care for our daughter.  Immediately, she said, "I might know someone," and proceeded to call them right then and there.  Well, a text led to a phone call and a phone call led to a visit and well the short version is....we have a new nurse for Sophie Kate.  

She is just precious.  I love how she has jumped in unafraid to take our girl on.  Yes, she's a nurse and that's her job, but Sophie Kate can strike fear in even the most confident caregiver.  The quality I love most about her is the sweet way she interacts with SK.  I can teach just about anyone the medical aspects of caring for SK.  I can even teach non-medical folks how to take care of her, but I can't teach them to love her.  I can't teach them to be tender and gentle and kind.  I can't make them connect with her.  So it's not just job competentcy that allows me to leave the house worry free, it's their connection, it's the relationship I see already forming that sets my mind at ease. 

The things I see that encourage me is the way she brushes Sophie Kate's hair and the soft sweet way she talks to SK when she doesn't even know I'm listening...that is what going above and beyond the job of hanging a feeding bag looks like.  Isn't it neat to look back and consider things...in September and even before that, before we even knew we had a need for another nurse God was already preparing.  Preparing us and preparing her for that meeting on December 10th...I knew she was out there, we are so glad to have met her...I am encouraged. 

Philippians 4:19, "And my God will supply all your needs according to His riches in glory in Christ Jesus."  

Wednesday, January 28, 2015

Homebound

Things have been quiet around here because quite frankly there is not a lot to report...and that's a good thing.  Sophie Kate hasn't been seen around town much these days because it is "sick season."  She is home from school, she is home from church and she is home from just about all extracurricular activities.  I would normally have a huge problem with that because there is always a part of me that gets sad that she can't get out and go places with us during the winter.  However, when I look back on this season so far, I know without a doubt that we have made the best decision for her.  She has been so healthy so far this winter. And it's not just that she is sitting at home with her boring mama either.  Sophie Kate gets 3-4 visits a week from the homebound services through our school system.  Her teacher and her therapists are coming weekly to work with her and she is making wonderful progress while being in an environment that does not compromise her health.

This would normally be the time where I would tell y'all how mad it makes me when parents send their children to school sick and how my "well" child can't go to school because of the selfishness of some parents.  And yes that still makes me sooo mad so don't get me started on that because I'm not doing that today.  She is doing so well and is accomplishing so much here and I am just not going to go there today.

Last year was our first experience with homebound school and it came about as a result of a very serious illness that SK battled in December of 2013.  So, homebound school last year was very limited for Sophie Kate because she was recovering and was so very weak.  This year, however, we took her out of school in November to try and keep her well through the winter.  So homebound school this year has looked quite different...she has soared.  I even get the benefit of seeing her teachers and therapists work with her and let me just tell y'all that is a privilege.  I wish everyone could see how hard these folks work and how much they put into these children and in turn how the children respond.  It is nothing short of amazing. 

Sophie Kate is using her switch to talk for her, she is making choices and she is staying strong and healthy.  So as you can see, my feelings about her homebound status this season have changed a bit when I see how well she is doing.  Now you know why my answers to your questions about her might be short and sweet...she's good, she's healthy.  It's really not a bad thing that I don't have a lot to say about what's going on here, it's a nice change of pace.  

Psalm 71:6, "By You I have been sustained from my birth; You are He who took me from my mother's womb; my praise is continually of You."

Monday, January 12, 2015

Yes

Going back to school and getting back to a routine last week was brutal, I'm not going to lie.  People are tired and ill-tempered and do not have nice faces when they wake up early around here...seriously I don't know how Chad deals with all of us some days.  He is the only one in the house that doesn't wake up mad.  Oh not mad at each other, just mad because it's too bright and we like sleep alot.  How many more days is it until summer vacation? Come on, I know someone knows the answer to this question.

Sophie Kate is doing really well so far this "sick season," as we like to call it.  We are keeping her home most of the time, but she has been to some of her oldest brother's basketball games.  Do you think having her hold her own bottle of hand sanitizer is taking things a bit too far?  Cause I think it sends the perfect message...back off!!  No really, I used to have a little stop sign that hooked onto her stroller that said, "Stop, wash your hands before touching me."  I don't know what ever happened to it, but I so loved it. Now, we just carry around our own bottle of hand sanitizer.  

We are managing well with her hip right now.  We did see her Orthopedic surgeon back before Christmas.  We have a lot of options on the table concerning her hip situation, ranging from doing nothing to full blown surgery (which really isn't a option in my opinion at this time).  We are weighing all the options and are seeking wisdom from the One who knows her best.  We pray for direction from God as we navigate this new road with our girl.  Please know though that she is doing well and she is healthy and for that we are so thankful.  

This sweet girl is so strong and shows me every day what it looks like to be content and joyful in your circumstances. This question was asked in our small groups yesterday..."Would we still love God as much as we say we do if everything fell apart?"  I have thought a lot about this very question or a variation of it many times over the past 7+ years.  I can honestly answer "yes."  Everything has fallen apart, everything I knew, everything I thought I would have...dreams and futures, paths and directions have all changed and the answer is still yes.  My beliefs have been challenged to the core and have been rebuilt with clear eyes and a new understanding.  My God, my commitment, my love and devotion to Him are no longer based on my circumstances but I didn't fully know that until my circumstances changed.  And in the midst of change and unbelievable difficulty and turmoil and the shifting of everything I have ever known...He remained. God remained unchanged and unmoved and steadfast. And while I would give anything for things to be different for Sophie Kate, I never want go back to the person I was before.

Hebrews 13:8, "Jesus Christ is the same yesterday and today and forever."      

Sunday, January 4, 2015

A New Thing

"Forget the former things, do not dwell on the past.  See, I am doing a new thing.  Now it springs up, do you not perceive it?  I am making a way in the wilderness and streams in the wasteland." Isaiah 43:18-19.

How is it that we relagate a new beginning or a clean slate or a fresh perspective to just once a year?  We kind of do, don't we?  And I get it, it feels natural it's the beginning of a new year, hope and possibilities seem to lay out before us. We feel a renewed sense of being able to change things and get things done.  Then life happens and disappointment sets in and we find ourselves living the same life and doing the same things we have always done day in day out, week in week out and year in year out.

But our God isn't confined to a new year or the start of a new month or the beginning of a work week because we come up against trials and difficulty and tough decisions continuously.  "Now it springs up, do you not perceive it?" Oh, I so want to perceive it.  It may not look like we want it to look, but we want to perceive it Lord.  He's making a way when it looks like there is no way, He is pouring streams into our wasteland.  He is sustaining us and holding us in the seasons when the answers to our prayers are "no" or "not right now" or "wait."  He is still doing a new thing.  He is doing a new thing in our hearts, if we will let Him.  He is doing a new thing in our families and in our churches and in our communities.  

We can't fathom it, we can't imagine it in our pain and in our hurt, but God let us perceive it...through the fog, through the tears, in the brokenness and in the heart sickness of this life let us perceive it!  In Your name there is hope, in Your love there is peace,  in Your word there is truth, in Your death and resurrection there is life.  You are light, let us shine everything You are on our darkness, on our hurt, on our worries and into our decisions and watch what "springs up."

He is doing a new thing!

Monday, December 29, 2014

Christmas Day

It's a weird kind of transition to do Christmas with a teenager and an almost teenager.  Thank goodness it is a transition and doesn't happen overnight or all of a sudden, but instead it's a gradual change so that our mama hearts are able to take it.  In fact, I can't say that it was bad or sad, it was a very pleasant change to be able to sleep and do Christmas morning around 8:00 or 8:30 versus 6:00am...I rather enjoyed it, we like our sleep around here.
In fact in an effort to get Sophie Kate up and ready for all the Christmas morning activity, Chad and I were the first ones up.  Sophie Kate followed closely behind us and let me tell you by the look on her face she was not very happy about it.  Did I mention that we like our sleep around here? I think Grey was the only one who woke up on his own Christmas morning.  It was quite lovely though because we had time to get our coffee, get the sausage balls in the oven and turn on the Christmas music.  Now don't get the wrong impression, we are still that family and the wonderful chaos quickly ensued once we got our sleeping teenagers out of their beds.  

After the boys opened their gifts, it was Sophie Kate's turn...



These are priceless to me.  I love to see them interact with their sister.  They each have their own relationship and bond with her and you can see by the look on her face that she absolutely adores them.  

We battled sickness off and on the week of Christmas and I can't even believe I am saying that it didn't involve SK. Two of the boys have been sick and it has been nothing short of a miracle that we have been able to keep Sophie Kate from getting it.  Homebound school has been the best thing for her, she has been healthier this December than she was last December.  I don't know what January and February have in store for us, but November and December have been kind so far and for that we are thankful.

We are looking forward to healthy days in 2015.  We are looking forward to experiences both ordinary and extraordinary with our girl.  We know that hospital discharges and extubations are just as precious as our days spent at Disney.  We know that a healthy homebound school day is just as special as a camping trip.  We know that bright eyes and a big smile at home is just as sweet as seeing it while she is horseback riding.  It's the experiences, the moments, the tears, the love and the joys that contribute to who we are.  May Christ in us show through all our experiences in times of plenty and in times of difficulty as we face the New Year. 

Psalm 115:1, "Not to us, Lord, not to us but to Your name be the glory, because of Your love and faithfulness."