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.
Monday, April 28, 2014
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.
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.
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 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.
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.
Monday, April 7, 2014
Purpose
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.
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.
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