The Boardwalk Trail

The past couple of weeks have caused me to get off track in the telling of our Desoto Park adventure on Good Friday.  I know I left you hangin' a couple of posts ago and I definitely want to do that fun day justice. 

On the suggestion of a friend we were told not to miss the Boardwalk Trail b/c it was wheelchair accessible.  Ok, I'll be honest I was thinking, it will probably be boring and the boys will be begging us to go and do something fun in no less than 5 minutes.  Wrong...this is what we found at the end of the trail...

Well, let me start at the the beginning...

This is what the trail looks like, it is totally wheelchair accessible.  We could all go together, no one had to be left behind.  This trail was the vision of a former superintendent of the park to allow people of all abilities access to the beautiful surroundings of this park.  It was wonderful and was so enjoyed by our family.  So now that I have showed you the end and the beginning, I'll show you the middle cause that was where all the fun was.

Cooper helping Grey until he got used to things...

The sun was coming and going that day, it was perfect weather and our girl was so content to be keeping up with the brothers.

Is it cold G?

Because these two don't seem to mind...

 

One of my favorites, it totally captures the spirit of our little Grey...

My favorite of Miss Sassy...

Here's one I took on the way home.  I think we'll call this one a success...

The only reason Cooper is cut out of this picture is because he was sleeping with his mouth wide open.  I just couldn't do that to him, but trust me when I say he was out of it as well.


What a blessing a day away can be especially the hour and a half drive back home in silence, ha ha.


Thanks for checking in on us.

Mother's Day

Mother's Day weekend was beautiful here.  Baseball is winding down for us and things are fixin' to take on the feel of summer.  On Sunday we decided to take the kids to "the creek" (aka the Cahaba River) before heading over to Chad's parent's house for dinner.  

The boys always love it and Sophie Kate and I were able to find a nice spot in the shade.

Cooper's role as the big brother of this family is always ongoing and he not only accepts it but excels at it.

Boys tend to gather in these situations, there never seems to be a shortage of people to hang with when we go to "the creek."

I had a moment early on Mother's Day morning with my only daughter.  It was quiet in the house no one else was up yet, it was just me and my girl.  This thing we deal with every single day of our lives has still not lost it's ability to take my breath away by it's magnitude.  I got lost in my wants and wishes.  I want to hear her sweet voice, I want to see her take her first steps, I want to see her run and play like the other little girls her age.  I wish she had more play dates scheduled than therapy and doctor appointments.  

This is where I have to keep my focus vertical not horizontal.  I cannot view her and our family based on what I see around me, all this is temporary.  I have to keep my focus on eternal things, things that matter, things that have lasting value.  One day this will be a faint memory and the pain and sadness that this world holds will be no more. Hallelujah!!

In the meantime I will love on these 4 babies like there is no tomorrow and thank God that he has blessed me in such a way.  I pray for His leadership and His truth as I mother them in the way He would have me to.

Hope all the Mamas had a wonderful weekend too, thanks for checking in on us.

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.  He who was seated on the throne said, "I am making everything new!" Then He said, "Write this down, for these words are trustworthy and true."  Revelation 21:4-5 

A hip at risk

"Her hip is at risk," that is what we have been told about our little Sophie Kate's right hip (for my nurse friends SK has a 45% subluxation of her right hip).  Hmmm...how do I explain this one, how do I start from the beginning when I don't really know where the beginning is?


I feel as though I need to go back and reiterate something I have mentioned on here before...when I used to see children with special needs, before I had one of my own, I knew that their parents provided all their physical needs.  I knew they had to carry/lift them, feed them, bathe them, and on and on it goes.  What I didn't know is all the other problems and hardships that come with a non weight bearing child.  A child that has muscles so tight wherein bone is literally pulled out of socket, that is what has happened to my baby girl.  In layman's terms her right hip is 45% dislocated, it's not completely dislocated but it's halfway there.  Yes, we knew that this could be in SK's future, that a lot of children like her experience this same thing, I was just hoping it wouldn't happen this soon.  


We have now added another doctor to "Team SK," we met with a pediatric orthopedic doctor this week.  Our options are not clear cut and how could they possibly be when you consider her to be more than just an X-ray.  I really liked him and he has now become only the second doctor on her team to ask me to tell him about my daughter.  What I mean by that is that most of her doctors just jump in straight to the point of why we are there to see them.  This doctor took the time to find out about who she is, what she is able to do, and how she spends her days.  I love that.  He does recommend surgery, but we have options as to what type of surgery as well as the option to do nothing at this point.  After giving us his recommendation along with the pros and cons of all the scenarios, the decision was turned over to us.


See, here's the thing...she is so much more than the sum total of her diagnoses, it is a requirement that her doctors and therapists see her that way in order for them to be a part of her "team."  She is not to be seen as an X-ray to her orthopedist, a kidney stone to her Urologist, a G-tube to her surgeon or a seizure to her Neurologist.  She is a living breathing individual, she is a daughter, sister, cousin, granddaughter and friend.  She is a member of a family who loves her.  A life in which she is able to give and receive love.


Let me tell you that SK's hip is not the only thing at risk here, there is a risk with surgery.  Our family is at risk due to the recovery that some of these options will require, like SK not being able to be in certain positions for a period of time, which would make her a lot less mobile than we have become accustomed to.  There is a risk that her hip will become dislocated no matter what we choose to do, which leads to my sanity being at risk, big time.  


There has been so much discussed and thrown at us that it is becoming a jumbled mess in my head.  Please pray for us as we seek God's wisdom in moving forward, pray for clarity, pray for a clear answer as to the path we should take here.  There is no easy answer, no matter which route we take.  My girl has been on a good run for a while now, I cannot bear it if her smiles disappear.


Thank you for joining us in prayer. 

Desoto State Park

Occasionally our family "ditches" all of our responsibilities and takes off on an adventure, that's just how we do things cause we're awesome like that, ha ha.  Well, ok Chad was off work and we took the kids out of school and took off to Desoto State Park in Fort Payne, AL.

  
All this splendor is only 1 hour and 30 minutes north of us, just beautiful.

The boys got to see all this from places that made me quite nervous...note the "dangerous overlook" sign.

Sophie Kate got to take it all in from her carrier on her daddy's back, it's a great vantage point.

Not funny Chad.

We happened upon these huge rocks...

and it took my boys about 5 secs to scale them...

Here's the reality though, Sophie Kate could not get back to the big rocks in her wheelchair.  Chad unselfishly insisted that I follow the boys to the big rocks and he stayed with our little SK.  These are the things that make me sad.  It's not easy and as hard as Chad and I try to take her along and involve her in everything we possibly can, there are some things that she just can't get to/be involved in.  It truly weighs on my heart, but even in the backpack carrier, this would have been too difficult to navigate with our girl.

Sophie Kate enjoying the waterfall from her backpack carrier, gorgeous and I ain't talking about the scenery girlfriend.

My favorite of G-man...

I hate to overload this post with pictures so it looks like this adventure is going to be worthy of 2 posts.  More to come including the boys playing in an ice cold waterfall and a handicap accessible trail that the whole family could participate in.  It was a good day.

Thanks for checking in on us.

Heartbroken

My heart is so heavy today for our state.  We had devastating tornadoes come through the area Wednesday night.  The limited reports of loss that came in before we went to bed Wednesday night paled in comparison to the reality this state woke up to this morning.  Completely overwhelmed and heartbroken does even begin to describe the feelings that have come over all of us here in Alabama. 





Our family is safe and sound and it seems as though our little community has weathered the storm pretty well considering what has happened in communities all around us.  I have never seen anything like this in my life.  I know for a fact that parents are without children and children are without parents, so many lives lost.


While I have not lost a child or a loved one in such a way, I do know deep deep grief.  As I awoke this morning to the reports around our state, I could not help but be moved...to tears and to prayer.  The sun shining so brightly in the beautiful blue sky puts the gray eerily warm weather from yesterday in stark contrast.  I remember days like that after Sophie Kate was born.


How is the world still continuing on when my world has been devastated?  How can it be so beautiful outside with the dark sadness in my heart?  How dare the sun shine and days move on when I am frozen at this moment in time and the pain is so great.  


Father, bring us to You, gather the hurting in your arms.  May we be a people not just of words, but of actions as well...showing Your love to our neighbors and surrounding communities.  


Pray for Alabama, the loss of life and the destruction in our state is truly overwhelming.


Jeremiah 31:13 "I will turn their mourning into gladness;  I will give them comfort and joy instead of sorrow."