A New Diagnosis

Sophie Kate was diagnosed with aspiration pneumonia last week.  I have been scared of that diagnosis since the day she was born.  I was told she would be very susceptible to getting it and that it would happen over and over again.  It's a miracle it hasn't happened before now. What would it mean for our family? A hospitalization? A long recovery? I have feared this beast called pneumonia for some time.

It all went down so quickly.  I sent her to school and within an hour and a half I was called to come get her.  She had a fever of 101.7 and by the time I got there you could see how awful she felt just in her facial expression alone.  Her fever continued to rise topping out at 102.5.  The superhero we have as our pediatrician jumped on this quickly.  We caught it so early that only a slight increase in her granulocytes showed in her blood work.  A chest x-ray would not have shown the pneumonia that early, her white blood cell count was not elevated and you couldn't even hear it in her lungs yet...but he found it.  SK got a shot of antibiotics before we even left the doctor's office and then we continued antibiotics at home.

Sophie Kate even ended up going back to school last week. I'm amazed at her recovery...amazed and so very thankful. We handled this at home.  I have always said that we can get through anything here in the comfort of our home with everyone together and we did!  God has shown me through this that we can do it, I'm not as fearful as I once was and now we know what this looks like and we know we need to jump on it quickly.  I am not naive enough to believe that we are out of the woods or that each time will be this easy but God is guiding us by hand through this and I know He will continue to do so.

I have found joy in my circumstances, what is impossible to man God has made possible.  I have shared with friends that I never want to return to that deep dark pit I spent so many years in after SK was born.  Things have been going well for some time now and I wonder am I better because she is better?  If things were to take a difficult turn would I be back in that dark, hopeless place I lived in for so long?  I never want to go back there.  I want to make progress in this journey we are on.  I don't want all of this to be in vain and I know with confidence that God does not work that way.  What He has begun in us He will work out to completion.

Philippians 1:6 "Being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ."

Each day we are living in His love, His word, His grace and mercy.  We empty us of...us and pray to be filled with Him...His ways, His thoughts, His decisions and His words so that we may overflow all His love and goodness to others.  Praises to the Healer of our bodies and our souls. 

A Familiar Place

"You can't deny her, she looks just like you."  This was said to me at one of our Upward basketball games on Saturday. Really?  Does she really?  It's hard for me to see.  I was holding Sophie Kate at the time and usually get silent stares from folks that don't know us.  I couldn't even call the people that spoke these words to me acquaintances and like I said before people usually just stare, but these were such normal words..."She looks just like you."  I don't get such normal words.  I get the "pity stare" or the "pity smile" or "bless her heart" or "what a blessing she is" and that's if they say anything at all.  For the most part the stares don't bother me...for the most part.

My conversations mostly consist of therapy and wheelchairs, doctors appointments (both making them and discussing the ones we've had) and IEPs, feeding schedules and medicines...what she's on, what she isn't on, what works, what doesn't work, sicknesses, hospitalizations, equipment and on and on I could go.  For the first 2 years (or more) of her life I walked around with multiple copies of a 40 page manifesto of the first 30 days of her life.  I was willing and able to give it out to any medical professional just so I wouldn't have to keep going back over the gory details with each new team member.

I talk about her health on a daily basis.  I am constantly calculating and recalculating how much formula and water she's getting each day and how much she should be getting. Medicaid people call me, her feeding supply people call me, nurses and doctors, oh my.  Please don't get me wrong, I love them all and am so thankful for their presence in our lives, but you can see where simple conversation may "stand out" to me at times.  I like talking about her clothes, shoes and hair.  I realize it's trivial and insignificant, but it's also a break from reality for me.  It's not normal conversation for me.  Normal conversation for me consists of lots and lots of medical jargon.  It's become such a way of life for me that I don't even realize how consumed I am by it in this "special needs" world that I live in until I come up against "real life normal conversation" like I did this weekend.

Sophie Kate is sick today.  I had to go get her from school. It has come on her hard and fast and has taken away her smile.  I am back to my comfortable place beside her, talking about her to medical professionals and holding her tight as she gets stuck over and over again.  I am back to wiping her mouth and giving extra meds, taking phone calls from her doctor and adjusting feeding schedules. Hours and hours will be spent holding her and trying to make her as comfortable as possible.  Her dad and I will spend our nights checking on her continuously hoping and praying her breathing becomes even and regular even though we know it will not.  We watch her struggle and hurt and believe we could not be in more pain if we were beaten within an inch of our lives.  This world we live in, our "normal" takes my breath away still, but I will smile to myself when I think back to the simple words of a stranger, "She looks just like you."  What a privilege it is to be her mother.

Siran Stacy

Former Alabama running back, Siran Stacy brought the message at our church this past Sunday.  I am sure that Chad and I were among the very few in the congregation that didn't really know his story.  There has been much anticipation and excitement building up to his visit.  We were told that we wouldn't want to miss his story of tragedy and hope, but I didn't know what his tragedy was.  Before he spoke, I had heard that his family was hit by a drunk driver and out of the seven of them, only two of them survived (Siran and his daughter Shelly).  He lost his wife, his son and three daughters. 

I still couldn't figure out how I had never heard about this. We've lived in Alabama for almost 14 years now, how did neither Chad nor I hear about this on the news or something?  The answer to that question came as Siran Stacy began to speak.  He talked about what he remembered from the night of the accident, the night of November 19, 2007, the night his life changed forever.  As soon as he said that date I knew why we had never heard this on the news or anywhere else, it was because we were consumed with life in the NICU, our Sophie Kate was just 16 days old at the time he lost 5 of his family members in a terrible car accident.  We were trying to find our way in a new world as well.

We were trying to put one foot in front of the other, hold our family together, grieve for a life that our little girl would never have, figure out how to care for her, and wonder how the sun would ever shine in our world again.  Siran Stacy's message was powerful indeed, there is no other explanation for how joy can come from such tragedy besides God being present and at work in the utter brokenness of man.  

Siran spoke from the book of Daniel about Shadrach, Meshach and Abednego and the fiery furnace.  These three men were about to be thrown to their death in the furnace by King Nebuchadnezzar because they would not bow down and worship the golden idol as the king had commanded.  Daniel 3:17-18 says, "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O king.  But even if He does not, we want you to know, O king that we will not serve your gods or worship the image of gold you have set up."

My favorite part of that text is "But even if He does not..." Siran said the night before the funerals of his family members that he prayed to God to bring them back to him. Just like so many others in this earthly life, we too are living the "but even if He does not" part.  We are living the "no" to our prayers right now and we know that we will probably be living the "even if He does not" until we see Him face to face in glory.  At that time it will be a "yes," we will all have a new body then and our girl will be healed and there will be no more tears and no more pain.  Siran will be reunited with his wife and children and our girl will run, jump and sing with a beautiful new song.  

Sophie Kate's face lit up when Siran began speaking to her with a smile as bright and beautiful as it has ever been. Ever selfless and not wanting any spotlight on himself only and always pointing to our Savior, Siran prayed over our girl.  We were all gathered in a circle around her as he prayed and she grinned.

Please allow me to share a few more verses that Siran shared with us. It comes from Psalm 142:1-3, "I cry aloud to the Lord for mercy, I pour out my complaint before Him; before Him I tell my trouble.  When my spirit grows faint within me, it is you who know my way..."  Siran's message was that God is greater than anything we face. He's greater than death and when Siran said "He's greater than 11-19-07," I wrote down, "He's greater than 11-3-07." Hallelujah!  

Blessed by his message and prayers for his ministry as he continues to faithfully answer God's call on his life.

Unforgettable Smiles

Here are some updated pictures of my toothless kids...

SK's other front tooth fell out this week and I had to get a picture of these two and their missing teeth.  They won't be like this for long and I never want to forget those toothless smiles.

Love this one of SK looking at Grey, she loves him so much!  I showed Grey the pictures after I took them and he asked what I was going to do with them.  I said "I'm going to put them on Facebook."  He paused for just a minute and then said, "I'm ok with that."  He makes me laugh. 

Yay, it's Friday!  I'm so happy to be home with my girl today.  It's cloudy and raining a bit this morning and I foresee a day spent in comfy clothes underneath SK's electric blanket.  Some of our best days are spent here with no place to go.  Thanks for checking in on us.

Her angels

Matthew 18:10 "See that you do not look down on one of these little ones.  For I tell you that their angels in heaven always see the face of my Father in heaven."

This verse was in one of our Bible readings last week.  

Do you think this little girl has the attention of the Almighty...

I wonder what He whispers to her in her world of silence.  I wonder how deeply and personally she feels His presence in the stillness and quiet that is always hers.  Her angels see the face of God!

How He thought of me enough to gift me with one of His treasures I'll never know.  I think He knew that I needed her far more than she would ever need me.  Praise be to God for His good and perfect will.

Toothless

The tooth fairy has been busy around our house lately. Everyone has loose teeth and/or teeth falling out like crazy, except for me and Chad, ha ha.  Grey has lost his two front teeth among others.

I love a little one with their front teeth missing.  It's such a cute stage.  I love the way they talk, the way they have to eat and that precious toothless smile.  I remember when Cooper and Jacob went through this stage.  I can see them in my mind's eye, but just barely and I never want to forget what it's like.  

Sophie Kate, in a effort not to be outdone by her older brother, has lost one of her two front teeth as well and the other one is loose so she won't be far behind Grey.  She's already lost two teeth, which is way ahead of any of the boys at that age...such a showoff!!

Jacob and Grey are in the middle of basketball season right now, so we are enjoying 2 basketball games every Saturday.  Cooper is sitting out this season due to a heel injury last fall.  What it boils down to is that his bones are growing faster than the tendons and ligaments can keep up with and it's causing him some pain, nothing that some shoe inserts and rest won't take care of though. If you see him on a regular basis then this comes as no surprise to you, I'm thinking I have less than a year to go before he is as tall if not taller than me, that's going to be so weird. Everything is speeding by way to fast.  Time, please slow down.

Please take note of the little dachshund curled up on the pillow beside SK's chair.  We had a fire that night and he found the perfect spot in front of the fire but still next to his girl.  Here's some of the things that made my list of grace gifts this week...SK's health and her being able to go to school, dinner w/everyone around the table and that unforgettable snaggle-toothed smile.

1 Thessalonians 5:17-18, "Pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you."