"Everything is appropriate in its own time. But though God has planted eternity in the hearts of men even so, many cannot see the whole scope of God's work from beginning to end." Ecclesiastes 3:11(TLB)
This verse was included in the message our Pastor brought on Sunday morning. I find myself scanning the crowd from time to time wondering what pain, hurt, worry or concern folks are bringing with them to church on Sunday morning. I know the pain I carry around with me. It can't be left at home or outside the church doors. I try to stuff it behind a fake smile and an "I'm fine thanks, how are you?" but sometimes it just won't stay hidden and Sunday morning was one of those mornings.
Our Pastor being very transparent spoke of his own personal struggle and how life is not fair or easy and as Christians we were never promised it would be. How in the book of James where he says something like consider it pure joy when you go through various trials...and you think to yourself, really?? There are times when we feel like we are going through hell.
Amen...it is hell on earth when your child is so severely handicapped that she cannot walk, talk, sit by herself or even eat by mouth. It is hell on earth when you watch her suffer each and every day with muscles so tight that it pulls her bones out of socket, seizures that cause her to cry out with a sound that will bring you to your knees and yet day in and day out she is trapped in a world of silence unable to express even her most basic of needs.
I know my pain in watching her and trying to comfort her, I can't imagine the pain she feels being confined to a wheelchair or how her muscles must ache and hurt from being contracted so tight all day long. After each long day is done and she is in her bed and finally succumbs to sleep am I able to breathe a sigh of relief (if that's what you can call it). It is when she is sleeping that her muscles seem to relax some that her breathing is slow and even and seizures seem to be at bay. I am to count this all as pure joy, someone please help me with this one.
As I scan the crowd of people the pain and hurt is too much to even comprehend. The stories are endless the worry and burdens we carry around with us. Stories of loss, sickness, unthinkable diagnoses, betrayal, unforgiveness...the hurts of this life just go on and on.
Sometimes I just need permission to get it out. I don't realize it until the tears start flowing uncontrollably that I've been holding it in for a while...for the boys, for my family, for my friends so that I'm not a wreck all the time, b/c believe me I could be. This is a living nightmare with no end in sight and sometimes I need the "OK" to let the hurt out.
Thankfully our story does not end with a diagnosis though and yours doesn't either. Just as we can not understand why these things happen, we also can not fathom the "scope of God's work from beginning to end." There is healing and hope in the name of Jesus. Father God, hold us with your strength because we cannot bear these things on our own.
Monday, February 27, 2012
Thursday, February 23, 2012
Update on SK
Report from the doctor:
SK still has lots of thick green mucous running down the back of her throat (ewww yuck). He said she's not any better because she's still sick. In a warped kind of way this actually made me feel better. When the powers that be start talking about SK's breathing problems, it usually goes down a road that I am not willing to face right now and it gets real scary. So, I was actually glad to have a diagnosis and some perscriptions instead of lots of scary discussions. We have steriods, antibiotics and the suction machine out. Watch out SK we are giving you the full court press!
From earlier today:
Short and to the point today...Sophie Kate is still having trouble breathing easily and smoothly. We are going to see her doctor about it this morning. This week has been miserable, Chad and I aren't sleeping because her breathing has gotten so bad at night. It's hard to describe/understand Tracheomalacia, but it's as if a portion of her airway literally collapses at times when she is breathing and is difficult for her to move air in and out. It doesn't stay that way, but it becomes worse when she lays down. It is gravity related as well so laying on her back is out of the question. We have had difficulty with this in the past and it seems to come and go when she is sick especially. This time though is doesn't seem to be going away and it's been a week now since she was sick. To top all that off, I've been sick this week and now Jacob is too. So in between the times we could have been sleeping when SK was behaving, we"ve been up dealing other sicknesses too, good times.
I don't know what they are going to tell us today, but she can't continue on like this (nor can we) so please pray for our appointment this morning and for her healing. I'll update when I can. Thanks guys.
SK still has lots of thick green mucous running down the back of her throat (ewww yuck). He said she's not any better because she's still sick. In a warped kind of way this actually made me feel better. When the powers that be start talking about SK's breathing problems, it usually goes down a road that I am not willing to face right now and it gets real scary. So, I was actually glad to have a diagnosis and some perscriptions instead of lots of scary discussions. We have steriods, antibiotics and the suction machine out. Watch out SK we are giving you the full court press!
From earlier today:
Short and to the point today...Sophie Kate is still having trouble breathing easily and smoothly. We are going to see her doctor about it this morning. This week has been miserable, Chad and I aren't sleeping because her breathing has gotten so bad at night. It's hard to describe/understand Tracheomalacia, but it's as if a portion of her airway literally collapses at times when she is breathing and is difficult for her to move air in and out. It doesn't stay that way, but it becomes worse when she lays down. It is gravity related as well so laying on her back is out of the question. We have had difficulty with this in the past and it seems to come and go when she is sick especially. This time though is doesn't seem to be going away and it's been a week now since she was sick. To top all that off, I've been sick this week and now Jacob is too. So in between the times we could have been sleeping when SK was behaving, we"ve been up dealing other sicknesses too, good times.
I don't know what they are going to tell us today, but she can't continue on like this (nor can we) so please pray for our appointment this morning and for her healing. I'll update when I can. Thanks guys.
Monday, February 20, 2012
The Beloved Three Day Weekend
I know you have all been on pins and needles wondering how our OT appointment went on Friday after my rant about the paper work last week. It went really well. I liked the OT who worked with us and we left with SK's new elbow splints. They are homemade and those, in my opinion, tend to be the best ones. I have always been so impressed by the therapists we have had the privilege of seeing who make their own stuff. Yes, there are many pre-fabricated braces, splints, etc that could be "forced" to fit our needs, but I have always admired those that can make their own. It takes more time and certainly more patience but it is so appreciated by the parents when they aren't hurried out the door for the sake of convenience.
Sophie Kate's face was priceless when we put them on her Friday. She wasn't crying or in pain, we knew that, but believe me her expression was worth a thousand words. "Y'all have got to be kidding me. Take these things off me right now." She may be non-verbal but we knew exactly what was on her mind and she was not thinking good thoughts about either one of us at that point. I couldn't help but laugh.
Our girl still isn't completely herself after being sick last week. Her breathing concerns me and those around her, it's very noisy (more so than normal) and her tracheomalacia or "floppy airway" seems to be acting up something awful. So please be in prayer that our girl gets back to her regular self real soon.
We have that sweet gift of a 3 day weekend culminating in President's Day today so of course my kids will be up earlier than they have to be on a school day. As long as they don't wake up Sleeping Beauty and the Queen Mum there won't be any harm done, ha ha. For Grey that 3rd day off of school translates into wearing pajamas all day, which is exactly what he did the last time we had a Monday off of school. In fact when he wanted to go outside and play I said, "That's fine Grey but you need to change out of your pajamas," to which he replied, "Why mama?" Being unable to come up with any sort of reason that mattered, I said "I don't really know so have at it." And have at it he did...on the trampoline, shooting basketball and playing with friends all in his pajamas. We are looking forward to another day just like that today.
Thanks for checking in on us.
Sophie Kate's face was priceless when we put them on her Friday. She wasn't crying or in pain, we knew that, but believe me her expression was worth a thousand words. "Y'all have got to be kidding me. Take these things off me right now." She may be non-verbal but we knew exactly what was on her mind and she was not thinking good thoughts about either one of us at that point. I couldn't help but laugh.
Our girl still isn't completely herself after being sick last week. Her breathing concerns me and those around her, it's very noisy (more so than normal) and her tracheomalacia or "floppy airway" seems to be acting up something awful. So please be in prayer that our girl gets back to her regular self real soon.
We have that sweet gift of a 3 day weekend culminating in President's Day today so of course my kids will be up earlier than they have to be on a school day. As long as they don't wake up Sleeping Beauty and the Queen Mum there won't be any harm done, ha ha. For Grey that 3rd day off of school translates into wearing pajamas all day, which is exactly what he did the last time we had a Monday off of school. In fact when he wanted to go outside and play I said, "That's fine Grey but you need to change out of your pajamas," to which he replied, "Why mama?" Being unable to come up with any sort of reason that mattered, I said "I don't really know so have at it." And have at it he did...on the trampoline, shooting basketball and playing with friends all in his pajamas. We are looking forward to another day just like that today.
Thanks for checking in on us.
Thursday, February 16, 2012
New Forms, Old Feelings
Sophie Kate has been sick this week and has missed two days of school. Friday we are scheduled to see a new Occupational Therapist at Children's. Her elbows are becoming a bit contracted because she keeps them bent all the time and it is getting harder and harder for me to stretch them to point where they are straight. Hopefully she will be well enough to make the appointment, we certainly won't go if she is sick.
It's been a while since we have introduced someone new to our team. We get real used to dealing with the same doctors, nurses, teachers and therapists and they all know SK pretty well. On a random day as I sat down to fill out all the new forms they sent us in the mail, I was suddenly back in that place where it's difficult to breathe.
My eyes scanned over question after question..."What age did your child sit without assistance, crawl, walk, feed themselves, drink from a cup, dressed themselves, become toilet trained, etc." It then got even better when they wanted to know her birth history as well as any surgeries, hospitalizations and tests like MRI's and CT scans that she's had. Are you kidding me? Under complications at birth, surgeries and hospitalizations I just wrote yes lots and then under tests I wrote too many to recall. Seriously?
I get that they need to know stuff about my girl, but that was harsh. In less than one minute, I had been reduced to tears over a stupid form. I think it was because I haven't had to do that in while. During SK's first 2-3 years of life I was constantly telling her birth story and going over everything she had been through. The last time I have been over all of that was before she started her preschool class in September of 2010.
I know typical children see physical and occupational therapists too, but couldn't we have a separate form for the truly special needs kids. Of course that would mean that someone had considered the parents and I'm still waiting for that day. One size doesn't fit all, you know! Can't wait for our appointment on Friday, ha ha!
One of my friends totally nailed it when she said, "Too bad they don't have 'changing the world' on that list! I can do everything on that list, but I will probably never impact this world the way she has." Well, said my friend.
It's been a while since we have introduced someone new to our team. We get real used to dealing with the same doctors, nurses, teachers and therapists and they all know SK pretty well. On a random day as I sat down to fill out all the new forms they sent us in the mail, I was suddenly back in that place where it's difficult to breathe.
My eyes scanned over question after question..."What age did your child sit without assistance, crawl, walk, feed themselves, drink from a cup, dressed themselves, become toilet trained, etc." It then got even better when they wanted to know her birth history as well as any surgeries, hospitalizations and tests like MRI's and CT scans that she's had. Are you kidding me? Under complications at birth, surgeries and hospitalizations I just wrote yes lots and then under tests I wrote too many to recall. Seriously?
I get that they need to know stuff about my girl, but that was harsh. In less than one minute, I had been reduced to tears over a stupid form. I think it was because I haven't had to do that in while. During SK's first 2-3 years of life I was constantly telling her birth story and going over everything she had been through. The last time I have been over all of that was before she started her preschool class in September of 2010.
I know typical children see physical and occupational therapists too, but couldn't we have a separate form for the truly special needs kids. Of course that would mean that someone had considered the parents and I'm still waiting for that day. One size doesn't fit all, you know! Can't wait for our appointment on Friday, ha ha!
One of my friends totally nailed it when she said, "Too bad they don't have 'changing the world' on that list! I can do everything on that list, but I will probably never impact this world the way she has." Well, said my friend.
Monday, February 13, 2012
Kindergarten Basketball
We've added another basketball player to the family this season. So instead of having to go to two basketball games on Saturday, Sophie Kate gets to go to three and as if we didn't have enough going on daddy is coaching all three. Yeah, Saturdays are real fun around here.
Grey is in Kindergarten and this is his first year to play basketball. His games are a "hoot." Now to him and his teammates it is serious business so I would never tell him that we find his games so comical, but if you have never watched Kindergartners play basketball you are missing some good laughs. Oh, I also know that they don't want to hear that they are so dang cute, but they are.
They think they are so big. In fact the father of one of the boys on the team missed their first game and the dad was so sad he wasn't going to get to see it. His son told him not to worry that he could watch their game on TV. Isn't that the best?!? They totally think their games are televised, I love it!!
Grey is in Kindergarten and this is his first year to play basketball. His games are a "hoot." Now to him and his teammates it is serious business so I would never tell him that we find his games so comical, but if you have never watched Kindergartners play basketball you are missing some good laughs. Oh, I also know that they don't want to hear that they are so dang cute, but they are.
He was so excited for his first game.
Playing his buddy Hudson...
Clearly these two didn't care where the ball was, they just wanted to "guard" each other.
Sitting with his brothers on the bench...
Thursday, February 9, 2012
A Link
Typically, I don't like to post links of other's peoples blogs here because you would think that I could find the words to write myself, but I wanted to share a beautifully written post by Ann Voskamp entitled "What to do in hard times." Her style of writing moves me and I am touched often by this gift God has given her.
What if these days that are so difficult that hurt so deeply were viewed differently? If she were gone, I know that I would give anything to have even the most difficult days back. What if we saw our days as holy?
What if I did more than just survive this? I am called to do more than just survive hard times. I have a responsibility as a Christ follower to do more than just get through this. I have a responsibility to Chad and to these boys and to their sister to do more than just survive this.
The world tells us that to be happy and to have purpose we have to be whole, complete. I want to challenge myself to instead live in the abundant life Christ has promised where joy comes from the love our Creator has for us. I am blessed because I am loved. I am blessed because I have a Savior that laid down His life for me.
John 10:10 "...I came that they may have life and have it abundantly." He didn't say it would be perfect or without difficulty or just like we wanted it to turn out, but he did say that it would be abundant. Only can God can bring abundant blessings out of hard times.
I hope you will read this and be as blessed by it as I was...
http://www.aholyexperience.com/2012/02/what-to-do-in-hard-times/
Thanks for checking in on us.
What if these days that are so difficult that hurt so deeply were viewed differently? If she were gone, I know that I would give anything to have even the most difficult days back. What if we saw our days as holy?
What if I did more than just survive this? I am called to do more than just survive hard times. I have a responsibility as a Christ follower to do more than just get through this. I have a responsibility to Chad and to these boys and to their sister to do more than just survive this.
The world tells us that to be happy and to have purpose we have to be whole, complete. I want to challenge myself to instead live in the abundant life Christ has promised where joy comes from the love our Creator has for us. I am blessed because I am loved. I am blessed because I have a Savior that laid down His life for me.
John 10:10 "...I came that they may have life and have it abundantly." He didn't say it would be perfect or without difficulty or just like we wanted it to turn out, but he did say that it would be abundant. Only can God can bring abundant blessings out of hard times.
I hope you will read this and be as blessed by it as I was...
http://www.aholyexperience.com/2012/02/what-to-do-in-hard-times/
Thanks for checking in on us.
Monday, February 6, 2012
These Days
I am including this picture of Sophie Kate so y'all can all see the color of her hair. It used to be brown but is now turning shades of red like mine and Grey's hair. She's four and this has been going on since last summer I guess. I've never known a child's hair to start changing that late. My two older boys' hair has gotten darker over time, but it has just changed from blonde to dirty blonde. Sk has gone from a brunette to a red head. I am loving it, makes me so happy!
I am letting it grow out a bit this winter, playing around with different braids and such, but I know the bob will be coming back around as the weather changes from winter to spring.
Baby girl is such a light with her presence and her smile. She's on the go these days to school 3 days a week, to basketball games for all of her brothers on the weekends and everywhere in between. We're praying for a healthy "sick season" around here. We have learned to be content in the regular-ness of "normal" days because things can change so quickly with our girl.
There is something about being in the moment and being present in the everyday-ness of kids coming home from school, hearing about their day, listening to my kindergartner read to me, playing basketball out in the driveway and playing games after supper. I'm grateful for these days healthy and at home. These are the days I will miss when they are grown and my house is neat and clean all the time.
Thanks for checking in on us.
I am letting it grow out a bit this winter, playing around with different braids and such, but I know the bob will be coming back around as the weather changes from winter to spring.
Baby girl is such a light with her presence and her smile. She's on the go these days to school 3 days a week, to basketball games for all of her brothers on the weekends and everywhere in between. We're praying for a healthy "sick season" around here. We have learned to be content in the regular-ness of "normal" days because things can change so quickly with our girl.
There is something about being in the moment and being present in the everyday-ness of kids coming home from school, hearing about their day, listening to my kindergartner read to me, playing basketball out in the driveway and playing games after supper. I'm grateful for these days healthy and at home. These are the days I will miss when they are grown and my house is neat and clean all the time.
Thanks for checking in on us.
Thursday, February 2, 2012
A Sweet Story
Jacob invited a friend from school to go to church with us Wednesday night. This is a new friend and he isn't as familiar with our family as most of our friends are so when we proceeded to get Sophie Kate's wheelchair out of the back of the van, he had some questions.
"What's that for?" he asked. Jacob told him it was for his sister and that she was not able to walk or talk. It was at this point that Grey chimed in with "but she is still able to let us know how she is doing." "How?" he asked. Grey let him know that when SK smiles we know that she is happy and that when she cries we know that she is hurting or feels bad.
Jacob then added that when she was born she didn't get enough blood and oxygen to her brain and that she has some damage to her brain so that is why she can't walk or talk. This went on for a minute or two and I just listened as I busied myself getting SK into her wheelchair. Yes shocker, I said nothing. These are the same things I have said to them from time to time when they have had questions about their sister.
In fact just a few weeks ago, Grey said to me that he was sad for Sophie. When I asked him why he said because she isn't able to "run and stuff." It was then that we talked about how she is able to communicate with us in her own way, that we know when she is happy and when she isn't. Now here they are teaching and informing others about her. It wasn't sad it wasn't difficult or embarrassing for them. It is just who she is and it came through in their own words how much they know and how much they care about her.
This friend may have gotten more information than he ever wanted but he seemed to understand and it was no big deal to him and I think it would have been different if I had answered him. Hearing it explained by someone your own age who speaks in words you can understand makes a difference. Also, seeing that Jacob and Grey were perfectly at ease in the situation goes a long way too. They want to push her, they put their hands on her, they hug and kiss her and they help gather her bags so their friends see them as not standoffish or afraid but comfortable and at ease. It's a beautiful thing and I saw it all play out right in front of me.
Thanks for checking in on us.
"What's that for?" he asked. Jacob told him it was for his sister and that she was not able to walk or talk. It was at this point that Grey chimed in with "but she is still able to let us know how she is doing." "How?" he asked. Grey let him know that when SK smiles we know that she is happy and that when she cries we know that she is hurting or feels bad.
Jacob then added that when she was born she didn't get enough blood and oxygen to her brain and that she has some damage to her brain so that is why she can't walk or talk. This went on for a minute or two and I just listened as I busied myself getting SK into her wheelchair. Yes shocker, I said nothing. These are the same things I have said to them from time to time when they have had questions about their sister.
In fact just a few weeks ago, Grey said to me that he was sad for Sophie. When I asked him why he said because she isn't able to "run and stuff." It was then that we talked about how she is able to communicate with us in her own way, that we know when she is happy and when she isn't. Now here they are teaching and informing others about her. It wasn't sad it wasn't difficult or embarrassing for them. It is just who she is and it came through in their own words how much they know and how much they care about her.
This friend may have gotten more information than he ever wanted but he seemed to understand and it was no big deal to him and I think it would have been different if I had answered him. Hearing it explained by someone your own age who speaks in words you can understand makes a difference. Also, seeing that Jacob and Grey were perfectly at ease in the situation goes a long way too. They want to push her, they put their hands on her, they hug and kiss her and they help gather her bags so their friends see them as not standoffish or afraid but comfortable and at ease. It's a beautiful thing and I saw it all play out right in front of me.
Thanks for checking in on us.
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