Monday, April 21, 2014

Our Appointments

We have completed our two weeks of doctor and therapy appointments.  It was a difficult two weeks both emotionally and physically.  I am so thankful for the friends that went with us to each one.  As I have said before it has become very difficult for me to get out with Sophie Kate by myself, their help made the last two weeks much more bearable. As usual, these appointments have lead to other appointments and as much as I would like to say that we're done...we're not.  

Sophie Kate and I have a sleep study this week at Children's Hospital in which we will be doing pretty much everything but sleeping.  We had appointments that lasted hours upon hours in which we discontinued medicines that aren't working, increased medicines that weren't doing their job as well as they had been and even add a couple of new ones.  Sophie Kate will be having new equipment coming into a house that is already bulging with medical stuff.  We had x-rays done and were fitted for splints and AFOs.  Her pulmonologist is applying for more in home nursing hours for us which led to even more paperwork than normal.  We talked to therapists, orthotists, nurses, social workers and doctors.  We answered questions about our girl and our life from her birth until now that brought me to tears.

We were led very briefly into a quality of life discussion with our pulmonologist which he concluded with but we're not there...yet.  Chad and I know we're "not there" but it's the "yet" that gets me.  It's the "yet" that I cry over, it's the "yet" that keeps me up at night, it's the "yet" that causes my throat and chest to tighten up and makes it hard to breathe, it's the "yet" that I have been anticipating every day for 6 years.  

When I look at her chart and read the doctors notes I can't help but feel each and every one of their words.  It's painful to see the stuff I see written in black and white.  It's not as if I go out of my way to read those things either, it just happens every now and then because of all the paperwork we have to read over, add to and sign off on.  I read words like hypoxic ischemic encephalopathy and I feel sick.  I see the words severe developmental delay and it makes me cry.  I read their assessment of her and can't believe that this is really our reality.  I know that their assessments and opinions do not define my daughter.  I know that they don't see her beautiful smile and don't really know her sweet personality but there are times when we have to have these difficult conversations about our medically fragile child and it hurts.

In contrast to the difficult days we are experiencing right now, our Easter weekend was beautiful.  We are rejoicing in good days and smiles and togetherness.  Our Savior is active and alive and we have hope.  We live under the wing of His protection.  The Bible paints a beautiful picture of Jesus standing at the right hand of the Father at the stoning of Stephen.  "But Stephen, full of the Holy Spirit looked up to heaven and saw the glory of God and Jesus standing at the right hand of God. 'Look' he said, 'I see heaven open and the Son of Man standing at the right hand of God'" Act 7:55-56.  It is unthinkable to me that my Savior stands at the right hand of God the Father interceding on my behalf when life hits so hard that you think it will kill you.  Tears stream down my face at the thought of Jesus on His feet for our family.
Jesus has conquered sin, death and the grave.  He gives us life and hope and surrounds us with His all consuming love. We feel the pain of this life but know our treasure is in heaven.

Monday, April 14, 2014

For God's Glory

"When He heard this [meaning Jesus heard that Lazarus was sick], Jesus said, "This sickness will not end in death.  No, it is for God's glory so that God's Son may be glorified through it." This verse is from John 11:4, when our Pastor shared it in his message on Sunday I heard it as if for the very first time.  I have grown up in the church and I have read and have heard the story of Lazarus being raised from the dead many many times. This particular verse I just didn't remember, it didn't stand out to me before yesterday.  God had not revealed it to me in such a personal way until yesterday.  

It was just me, Chad and Sophie Kate sitting together in church on Sunday.  The boys were either sitting with their friends and/or in children's worship so it was just the three of us.  There will come a day where it will be just the three of us left at home as well, but on this particular day Sophie Kate's daddy had picked her up out of her wheelchair and was holding her in his lap.  I looked over at her as the words of this verse settled on me.  "This sickness will not end in is for God's glory."  

This earthly life will end in her death, most certainly, it will end in death for all of us, but there will be no spiritual death for those who follow Christ, those who live for Him, those who have accepted Him into their life as Lord and Savior.  I am a slow learner but I am learning that Sophie Kate was not placed in my life to fulfill some kind of dream I may have had about having a little girl.  God has a purpose for her just as he does for all of our children and it really doesn't matter what I think I might or might not want or desire for them.  That's a tough thing, I know, because they will have to go through difficulty themselves in order for their faith to grow and that's a very scary thing.  I can't imagine what it does to the hearts of mine and Chad's parents as they watch their children go through the pain that Chad and I have endured and continue to endure.  It's a tough thing to pray for the will of God for your children, but it's a far scarier thing to be living outside the will of God.

He gives us hope when there is no hope...John 11: 25-26, "Jesus said to her [Martha], 'I am the resurrection and the life.  He who believes in Me will live, even though he dies and whoever lives and believes in Me will never die..." That is where my hope lies, it is all for God's glory, we are all here to live a life that glorifies God.  It may not look like what we had planned in our mind's eye, but it's lovely and beautiful to our Savior when we are fully surrendered to His will for our lives.   

Monday, April 7, 2014


Who would have ever known that a meeting between a young girl and a tiny special needs baby could have possibly been a divine appointment.  How is it that a teenager who couldn't even drive yet would take the time to stay with our girl?  Not just stay with her but learn to care for her, feed her, change her, hold her, read to her...just sit with her.  Sophie Kate has been blessed beyond words to be surrounded by the kindest, selfless, most unafraid young women I have ever met.  I was not like them when I was their age.  To my discredit, I was much too self-absorbed.  I am so encouraged by the young women who are a part of SK's life...our family's life.

Sophie Kate and Caroline met three maybe four years ago. We were trying to remember how long we had been in each other's lives and it just seems like always.  I selfishly thought she was placed in our lives just for us.  God had bigger plans.  There's a verse in the Bible that says something like His ways are higher than our ways and His thoughts are higher than our thoughts...yeah, that's true (Isaiah 55:9).

All the time they spent together...holding, touching, smiling, singing and talking...who would have thought it was bigger than just the two of them?  God did.  I knew her heart, I would have never left our girl with her otherwise.  I knew how special she was/is, but I thought she was just for us, she wasn't.  All these years spent with our girl, could it possibly be in preparation for something else?  I am learning that it doesn't have to be instead of, but it is in addition to...that's the neat part about this whole thing. God is using her in our lives and in others lives as well.

A couple of weeks ago, our Caroline went on a mission trip (on her Spring Break) to the Dominican Republic.  There in a foreign country, in a place where she could not communicate she met a 3 year old special needs girl.  The folks taking care of her, by their own admission, "Don't know what to do with her."  She was so much like our Sophie Kate...nonverbal, couldn't walk or sit by herself. Caroline knew what to do with her and wasn't afraid to do it.  She scooped her up and talked to her, touched her, read to her and held her.  She took care of her in all the ways she has taken care of Sophie Kate so many times.  

My girl will probably never be able to go on a mission trip...but those who love her can.  My girl can touch the lives of other children through those that care about her going and doing.  I got a glimpse of our purpose here.  I got a glimpse of the "why."  There may not be healing for Sophie Kate in her earthly life and my mind often wanders to the "why" and asks what could possibly be the reason for all of this.  I will not know fully until I reach heaven but I got a glimpse through this story that has not only tied two families together, but also three girls.

How could we have ever known 3 or 4 years ago where this friendship would go?  God knew and it was bigger and wider and more encompassing that our human minds could ever perceive.  

John 4:34, "My food, said Jesus, is to do the will of Him who sent me and to finish His work."

I am encouraged...

Friday, April 4, 2014

These Days

The inactivity on the blog lately is not an indication of inactivity around here.  We have had a week out of school (Spring Break) and now a week back in school and life has just been busy with these boys and this little girl.  Thanks for all the care and concern about Grey and his kidney stones.  I think he is still hanging on to one of them but he is handling it all like a champ.

The time has come for the every 6 month doctor appointments with Sophie Kate.  We will have 6 appointments with various doctors and therapists over the next two weeks.  There is lots to go over since some of the appointments had to be rescheduled while SK was sick and have subsequently become way overdue.  We will be discussing the progression of her CP, specifically extremely tight shoulder, elbow and wrist joints as well as the beginnings of scoliosis I'm afraid.  We will talk seizures, meds, sleeping patterns, lungs, oxygenation and botox injections(for her not me) and that is just the doctor side of things.  We will then talk elbow splints, wrist splints and AFOs with the therapists.  I know that's not all that will be discussed but that's all I can come up with off the top of my head...makes me tired just thinking about all those appointments.

I am sad to share with y'all that Sophie Kate will not be going back to school this year.  We really hated to have to make this decision. I so wanted her to be able to go back and finish out this year in her classroom, she loves it so much...BUT as I mentioned here we are still dealing with too many kids being sent to school sick.  I am still having a hard time with this so I am going to just leave this post to do all the talking for me and believe me I am feeling every word of it these days.  My girl is missing out on all the benefits school has to offer her and it isn't right.  OK I am really going to have to stop myself, cause I could go on and on about this one.

Grey has had a hard time with his sister not coming back to school and I think that is why I am still having such a difficult time with it too.  "This is our last year together at the same school," he said to me through his tears.  He was expecting her to go back to school this past Monday and it has hit him hard that she is still not there.  He went on to say, "I never get to see her," to which I replied, "You do know that you live with her, right?"  He didn't appreciate that comment very much.

Sophie Kate still struggles some days and so do I.  The smallest things affect her in such a big way.  She used to be able to tolerate some time off her O2 and now she can't even go 30 minutes without it.  Her recovery time from sickness isn't as quick as it used to be.  I see her struggle every single day and it takes a toll on me.  Nothing comes easy to her except that beautiful smile of hers and I am thankful that she still shares that with us.

It's been particularly hard over the past few weeks even with Spring Break thrown in there I have been struggling with my thoughts and feelings.  Things are changing with our girl in so many ways and I long for easier, happier days.  I know that this summer will be different from last summer.  I want her included in everything our family does and that is becoming harder and harder and it hurts my heart.  God continues to show me in very real and tangible ways that He right beside us and continues to provide for our family.  I see it and I am thankful that I can still see it even through the hurt.  Our God is so good.

I have often wondered how my girl could affect the lives of children in faraway places.  She is not able to travel very long distances.  How could she ever touch the life of a special needs child in another country?  Well, I know now and I have the best story to share with y'all once I hear it firsthand myself and get permission to tell it.  Stay tuned it's going to be so good.

Friday, March 28, 2014

On a Tuesday Afternoon

On a random Tuesday afternoon, a friend of ours met us for a photo shoot at a nearby lake.  Here's what happened...
Our friend Ashley Warren has crazy good camera skills and gifted us with this photo session.  Words cannot express how much these pictures mean to me.
 My goodness how he loves this little girl...

The kindest kid you will ever meet.

His heart is even more beautiful than he is...
My precious girl...
All pictures are courtesy of Ashley Warren Studios.
She even got in a few shots with Mama and Daddy.  Even though we were not dressed for the occasion, I love these pictures just the same.

 A beautiful expression of what this girl means to us...
Local folks check out  This girl is super talented and creates beautiful family portraits.  We are so grateful to her for sharing her talent with us.

This last picture brings to mind the scripture I have shared here many times, once again it just seems to fit. Philippians 2:3 "Do nothing out of selfish ambition or vain conceit.  Rather, in humility value others above yourselves."

Monday, March 17, 2014

Same ER, Different Child

There is truly never a dull moment around here.  Doing life with us is most definitely not for the faint of heart.  Friday I found myself in the familiar surroundings of the Children's Hospital ER, except this time I was with a different kid...I wasn't with Sophie Kate, I was with Grey.  I won't go into too much detail for his sake, but we found out that he has 2 kidney stones.  He was in a good deal of pain and was extremely dehydrated.  He got fluids, meds and then we were sent home (thankfully) with more meds and his 2 kidney stones.  He is doing pretty good.  Kidney stone pain is an on again off again kind of pain and I have to say that he has been handling it all really well.

It was weird being there with him, answering all the familiar questions differently.  It was strange being there without Sophie Kate.  It was a completely different experience being there with someone who could talk.  He could tell them exactly how he felt and for the first time ever I was able to see how the nurses and doctors interact with a child that can answer their questions.  I didn't have to speak for him.  He could tell them exactly what was going on and he did.  Here I was in this very familiar setting yet everything felt strangely different.  

I hate that he knows how it feels to get an IV.  He did great but I hate that he had to go through that.  I asked him how it felt and how he was doing with it, because I wanted to hear him put words to it.  It may be the closest I ever get to knowing how it feels to her.  I wanted to hear everything in his words because they are so close in age and so close in their relationship and I know that he is more than capable and qualified to speak on her behalf.  He could tell me what he needed and what I could do to help him and in doing that and in having that experience with him, as difficult as it was, it will help me with her.  It will help me in knowing how she is feeling and what I can do for her to make her more comfortable when she is there.  He has no idea how he continues to help her by just being who he is.

Our girl was back in the saddle on Saturday...

Sophie Kate rode for about 20-25 minutes and then did some therapy on the "jellybean."  Grey wasn't about to miss a day with his best girl just because of some kidney stones.
No one said anything to this child about going over and helping his sister, this is just what he does.  This kind of stuff can't be taught, it's just a part of who he is.
So the day after he spent 6 hours in the ER receiving fluids and meds he spent some time doing this... 
 I want to be like Grey when I grow up.

Monday, March 10, 2014

For the love of horses

"She did better than I thought she was going to do."  I have heard this statement or one very much like it so many times in the past six years that I have lost count.  I have heard this from doctors, therapists, nurses, etc...folks that quite frankly don't know our girl.  They don't know how strong she really is but they find out soon after meeting her.

I applied for Sophie Kate to be in a horse therapy program called Special Equestrians...2 years ago.  Yes, you heard right there is a 2 year waiting list to get into the program. Well, it's finally our turn and we went for Sophie Kate's evaluation on Saturday.  As so many of you know, a lot has happened in the past two years as we have been waiting for our turn with the horses.  There are so many concerns for someone like SK in a program like this because she requires so much assistance while riding.  Would they have enough volunteers?  Would it be safe for our girl while riding?  Would they physically be able to support her on the horse?  These were all questions the staff was very concerned about regarding our girl.  They are certainly valid.  They were not sure if this would work out for us and consequently neither was I.  I think deep down inside I just didn't want to get my hopes up once again and then be so sad when things didn't work out.  

I have loved horses my whole life.  I have wanted to be a "horse person" my whole life.  I am not one, but there is something about these animals that I have always been drawn to.  Just ask my daddy, he knows how long I have loved these animals.  I have had small snippets in my life where I have been able to spend time around these beautiful animals and it has always made me so so happy. I even volunteered at a program exactly like this in Tennessee when I was in college.  Yes, I volunteered to assist special needs children in riding horses years ago and now here I was with my daughter on the verge of participating in pretty much the exact same program.  

I volunteered in the program back home around the age of 20 and I have to admit that I was drawn to the program because of the horses.  I learned to bring them in to the stables, brush them, saddle them, help with the riders and tend to the horses afterwards, even down to scraping out the packed in mud and dirt from their hooves.  I love these animals.  There is something about them, something in their eyes, something about their movement...I am just drawn to them.  I could spend time just touching them and talking to them and be happy for days.  I know I probably sound very strange to some folks right about now and I can assure you that if you really knew me it would only confirm that for you, but that's okay, I am quite comfortable in my weirdness.  

Sophie Kate started out on what they call the "jellybean" to see how she might do sitting on a horse and to get all of her safety equipment fitting properly...

Then it was go time...
 First time on a horse ever in her life such a neat moment.
Her helmet was a bit ill-fitting, but I think that may be a small smile I see there.
You can see what a job this is for the staff and volunteers, these kids are not riding little ponies.
 Needing a bit of adjusting...

This is amazing, look at her sitting so nice and tall on that horse.
Looks like she is taking in everything we are all saying to her.  
Y'all all know this girl travels with an entourage and this day was no different.  There was no less than 2 camera phones and one regular camera on her at all times.  She has gone to almost every baseball, basketball and football game her 3 brothers have ever played in and now it was her turn.  
It was her turn...and they were all there watching her.  So back to my opening statement, we were told once again that "she did much better than I thought she would do." That's our girl, all you have to do is tell her she can't do something and then just sit back and watch her do it.  She did fantastic and she is going to start her class next week.  
There is so much emotion for me in this one picture.  We have a "horse person" in the family after's my daughter.