Our Spring semester of horseback riding ended a week ago with a horse-show put on by the riders of Special Equestrian.
This has been such a neat thing for us to experience with her.
Our girl received a first place ribbon and a trophy. Somebody please tell me how every participant does not deserve a trophy...go ahead, I dare you! I'm not sure who was more excited for her...Chad and I or Grey.
As you can see, Sophie Kate pretty much relaxes when she is on her horse. It was a sweet ceremony and she got to ride a long time which she loves. These animals are such good therapy for her. I am so thankful that she is able to participate in Special Equestrians at this time.
There is a new movie coming out soon called "The Fault in Our Stars," actually it is a book being made into a movie. Now I don't put myself in situations to read or watch sad books or movies, but I have seen the movie trailer for this book/movie that I will not be reading or watching and there is one part of the trailer that I absolutely loved. The main guy character is talking to the main girl character and he says, "What's your story?" The young girl replies, "Well, I was diagnosed when I was 13..." The guy then says, "No, I mean 'what's your real story, your hobbies, your passion." I seriously love that part. I've decided this is going to my new response for Sophie Kate. When doctors, therapists, etc ask me about her story I am gonna say, "Well, she loves music and being outside. She is happiest around her brothers and likes to be right in the middle of noise and chaos. She smiles really big when you get on her level and talk to her." I can't wait to see all their faces.
Seriously, if I tell you she has Cerebral Palsy what does that really tell you about her? If I tell you she is feed through a feeding tube and is on continuous oxygen now and she has seizures and she is nonverbal and is wheelchair bound...what does that really tell you about who she is? But when I say she has a smile as bright as sunshine and she lights up when you talk to her not at her and she's really into Tinkerbell right now...well, that's a description. When I say she likes for someone to read to her and smiles when listening to music and likes to be tickled well that my friends is a story worth telling.
Okay so while I will most definitely not be seeing this movie because it's going to be super sad and I don't do that to myself anymore, I have to say that I really love that part of it and am quite satisfied that it is the only part of that movie I will ever see. I am so going to do this though and I will report back and let y'all know about all the funny looks and responses I get. She is so much more than the sum of her diagnoses.
Upon pulling into the church parking lot on Mother's Day Sunday, Chad leaned over to me and said, "Whew, we made it. Happy Mother's Day." I had to smile, because that pretty much sums us up. We get up early most mornings and Sunday mornings are no exception. I get up around 6:30, ok 6:45 at the latest. I don't think it would matter if I got up at 5:30 because that last 20 minutes is going to be filled with some kind of crazy no matter how much we prepare in advance.
It's just the nature of the beast with getting four kids and two parents up, fed (at least some of us), dressed and out the door kinda sorta on time. Usually one if not more of us end up getting muffins from the coffee bar at church and at least one if not more of us end up without breakfast because we just ran out of time...no worries grandparents, that's almost always the parents. One of the funniest things I find myself regularly saying on any given Sunday is "Put on your church flip flops." Yep we have church flip flops and just regular every day flip flops. Is there really such a thing as a dressy flip flop? Seriously, if wearing flip flops to church is wrong then me and my third born don't wanna be right.
We only live about two miles away from our church but that 2-3 minute drive in on Sunday morning (depending on the traffic light) is full of..."does everyone have their Bibles," "put the electronics down," "is anyone listening to me" and "you better not be playing those things in church." Yes, we are very spiritual on our ride to church every Sunday morning, ha ha.
All that early morning hustle and bustle though becomes worth it when I sit in church with that sweet girl. There, much like home, she is surrounded by people who love her. I can feel the richness of the words I am singing when she sits beside me in the arms of her daddy. This week I sang the words, "Spirit lead me where my trust is without borders/Let me walk upon the waters/Wherever You would call me/Take me deeper than my feet could ever wander/And my faith will be made stronger/In the presence of my Savior" with my arms around Sophie Kate. Those words are so real to me. My arms, my heart and my life literally wrap around those words. I can see them in the struggle and pain she and I have experienced. I can feel them in the warmth of her skin. I remember them and sing them to her when I sit beside her in the quiet.
It is not lost on me that our girl is back to going to church with us every Sunday. It is a sweet gift to my soul. This is a beautiful, painful, wonderful, difficult journey we are on with our God and our girl. Our faith grows stronger every day through hurt, through healing and through the hope we have in Christ. He turns our darkness into light and our mourning into joyful song. May we be so careful to ever and always point to our Savior, "The author and finisher of our faith" (Hebrews 12:2).
These four call me mama...
and it doesn't matter what they give me on Mother's Day or where they take me to eat. This relationship is forged in the everydayness. It started as I carried them warm and close with me for 9 months. It grows stronger with every hug, kiss, tear, smile and conversation we share.
Cooper and I have laughed so hard lately. I hope I never forget the sound of him laughing uncontrollably and I hope he never forgets how much we laugh together. I recently had a conversation with Jacob about how much I value his individuality even when it seems like others around him don't. I've spent time scratching the back of my youngest son because when I do he'll lay beside me forever. I've held the hand of my little girl, looked into her sleepy eyes first thing in the morning and told her over and over how beautiful she is and how much she is loved.
It's cute how Chad tries to get them to get along and not complain on Mother's Day, but it's just about impossible to get 3 brothers to get along all day long no matter what the occasion is. We're loud, we play hard and laugh even harder. They are all mine and I don't want them to be anyone other than who they really are.
Happy Mother's Day to all of y'all getting it done...I feel your joy and your pain, we're in this thing together.
It's that time of year when I deem the school year so close to being over that I kind of start "checking out." The weather has turned a summertime kind of warm and Memorial Day weekend is just around the corner signaling an official start to our summer. I can't check out completely though because there are still some projects to wrap up and Middle School exams to get through so I have to power through or at least pretend to for my kids, right?
I am weak though and our weekends are only foretelling the awesomeness that is in store for us when we can sleep late again. My children, knowing the end is near, sense my weakness. With high hopes of getting checked out early or even possibly getting to stay home, Grey says all the right things like "I need a pajama day" or "I just want to stay here with you and Sophie." He's good, he's real good and I am powerless to his charms in my weakened state.
Sophie Kate's appointments are going to push on into our summer. We are still in the process of having splints made and fitted properly. We have appointments scheduled for Botox injections and for check ups on how she is doing with her new equipment. However, she's feeling good right now and we are all back at church together. She gets the biggest kick out of being around people. She loves waking up to the rowdiness of all her brothers being home so this summer ought to be the time of her life, ha ha.
I want her to see and do and go and feel and smile and know that she is loved so so big. We are ready not only for some quality time with our boys but also quantity time. So you can see how when Grey says, "I just want to stay home with you and Sophie," I get a little bit mushy and weepy inside. Yep, we're ready for you to be home with us too...all of you.
Another week down and we're another week closer to summer. We had another week of appointments stemming from all of our six month doctor visits. Sophie Kate and I spent Thursday night at Children's Hospital for a sleep study. She now sleeps with a cpap mask strapped to her face every night. We also have a cough assist machine we are supposed to use with her twice a day. I'm not real sure where we are supposed to fit that in...i guess somewhere in all our "free time." I am not exaggerating when I say that if I didn't carve out specific time for the boys, literally everything I do could be something pertaining to SK. There is no end to what needs to be done for her. There is guilt when I can't do everything I feel like I need to do for her and guilt when I do accomplish everything I need to do for her because I know that if I ever do succeed at completing all that needs to be done for her then I'm neglecting someone else.
I am constantly being reminded by all that surrounds me demanding and begging for my attention that I am not enough. I disappoint, I let people down, I say the wrong thing and I make bad choices. I allow the lives of other families and other moms to be my measuring stick and I find that I don't measure up. I'm not skinny enough, I don't cook enough, we don't have a big enough house, I don't drive a "cool" car and we never have enough money. These are the things I concern myself with when I compare myself to others...possessions and status, these things are all very "me" oriented.
I have to stay completely covered in the truth and these things are not the truth and these things don't determine my worth and my value. When I move the focus from myself to my God I find love, comfort, peace, joy and purpose. Our pastor reminded us of this verse, "Long before He laid down earth's foundations, He had us in mind, had settled on us as the focus of His love, to be made whole and holy by His love" Ephesians 1:4. He had us in mind? He settled on us? I find my worth and my purpose when I consider these words, that the God of the universe had us on His mind and settled on us as the focus of His love. I then find an ease and a contentment in my life. I am able to listen and laugh with these boys, hold hands with their daddy and take time in my day look into this girl's beautiful brown eyes and feel the warmth of everything she is. My God speaks truth to me through His Word and my purpose becomes very clear and in Him I am empowered to accomplish it.
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.
"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 death...it 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.
