Thursday, December 28, 2017
Tuesday, December 19, 2017
Always Winter
Forgive me if it seems a little melodramatic but if you know me fairly well then you might not be so surprised by my dramatic side....
Lately I've felt a little bit like it is always winter and never Christmas. And that my friends is a terrible feeling. It's a feeling of being stuck in a cold and dreary place and there is no light at the end. It is how I've been feeling about our journey with Ezra. It's appointment after appointment and test after test and never any answers. It's call after call to therapy places and doctors offices and insurance companies and never any results. It's watching babies much younger far surpass Ezra in hitting milestones and seeing little or no progress toward his milestones. It's fighting feelings of being overwhelmed and inadequacy and guilt over not working on therapy's enough at home. It's dealing with hurt and frustration that I can't get him seeing the therapists he needs to see and the ridiculous amount of money it is going to cost to pay those therapists once we get them. It's the not knowing how long I'm going to have to keep this up, how long is he going to be delayed. It's the fear that he might never catch up and this might be something permanent. It's not knowing if there is an end or if we will just be struggling for years and years....see melodramatic...
I'll go even further and let you all see the nerd I am...
I understand in part why Tolkien wrote the section about Frodo and Sam and the terrible journey to Mordor the way that he did. It is so terribly monotonous and you just want his writing about the journey to end because it seems as if nothing is happening and yet it goes on and on (I've heard many complaints over this part of the book) and yet it's awesome because in a small way you experience what it felt like to be on that long and terrible journey and just wanting it to end while reading. And I feel tired and weary like Frodo and Sam. When is this journey going to end? Is there any hope that is will end? And will it end all right? I don't have answers.
But I have Hope and it has come to me through the celebration of the Advent season and a remembering of all that God has done and has promised to do. 2000 some odd years ago God kept his promise that had been a long time coming in the sending of the Messiah. God sent his only Son, Jesus into the world and that is what we celebrate at Christmas. And if God kept his promise to send the Messiah then we can be assured that he will keep his promise, "he will dwell with them, and they will be his people and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall their be mourning, nor crying, nor pain anymore, for the former things have passes away" (Revelation 21:4-5). I was reminded during the gathering of the church that I don't need a distraction in the form of Christmas events to get my thoughts off Ezra and the pain and suffering I'm experiencing because of our situation what I need is "a Hope that transcends the pain, suffering and brokenness." Jesus is that Hope. Jesus is my Hope. Christmas is my reminder of that Hope.
I leave you with the lyrics to one of my favorite songs, In Like a Lion by Relient K, you should google it and listen it's worth it:
Lately I've felt a little bit like it is always winter and never Christmas. And that my friends is a terrible feeling. It's a feeling of being stuck in a cold and dreary place and there is no light at the end. It is how I've been feeling about our journey with Ezra. It's appointment after appointment and test after test and never any answers. It's call after call to therapy places and doctors offices and insurance companies and never any results. It's watching babies much younger far surpass Ezra in hitting milestones and seeing little or no progress toward his milestones. It's fighting feelings of being overwhelmed and inadequacy and guilt over not working on therapy's enough at home. It's dealing with hurt and frustration that I can't get him seeing the therapists he needs to see and the ridiculous amount of money it is going to cost to pay those therapists once we get them. It's the not knowing how long I'm going to have to keep this up, how long is he going to be delayed. It's the fear that he might never catch up and this might be something permanent. It's not knowing if there is an end or if we will just be struggling for years and years....see melodramatic...
I'll go even further and let you all see the nerd I am...
I understand in part why Tolkien wrote the section about Frodo and Sam and the terrible journey to Mordor the way that he did. It is so terribly monotonous and you just want his writing about the journey to end because it seems as if nothing is happening and yet it goes on and on (I've heard many complaints over this part of the book) and yet it's awesome because in a small way you experience what it felt like to be on that long and terrible journey and just wanting it to end while reading. And I feel tired and weary like Frodo and Sam. When is this journey going to end? Is there any hope that is will end? And will it end all right? I don't have answers.
But I have Hope and it has come to me through the celebration of the Advent season and a remembering of all that God has done and has promised to do. 2000 some odd years ago God kept his promise that had been a long time coming in the sending of the Messiah. God sent his only Son, Jesus into the world and that is what we celebrate at Christmas. And if God kept his promise to send the Messiah then we can be assured that he will keep his promise, "he will dwell with them, and they will be his people and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall their be mourning, nor crying, nor pain anymore, for the former things have passes away" (Revelation 21:4-5). I was reminded during the gathering of the church that I don't need a distraction in the form of Christmas events to get my thoughts off Ezra and the pain and suffering I'm experiencing because of our situation what I need is "a Hope that transcends the pain, suffering and brokenness." Jesus is that Hope. Jesus is my Hope. Christmas is my reminder of that Hope.
I leave you with the lyrics to one of my favorite songs, In Like a Lion by Relient K, you should google it and listen it's worth it:
In Like a Lion (Always Winter)
It's always nice to look out the window
And see those very first few flakes of snow
And later on we can go outside
And create the impression of an angel that just fell from the sky
When February rolls around I'll roll my eyes
Turn a cold shoulder to these even colder skies
And by the fire my heart it heaves a sigh
For the green grass waiting on the other side
It's always winter but never Christmas
It seems this curse just can't be lifted
Yet in the midst of all this ice and snow
Our hearts stay warm cause they are filled with hope
It'd be so nice to look out the window
And see the leaves on the trees begin to show
The birds would congregate and sing
A song of birth a song of newer things
The wind would calm and the sun would shine
I'd go outside and I'd squint my eyes
But for now I will simply just withdraw
Sit here and wish for this world to thaw
It's always winter but never Christmas
It seems this curse just can't be lifted
Yet in the midst of all this ice and snow
Our hearts stay warm cause they are filled with hope
And everything it changed overnight
This dying world you brought it back to life
And deep inside I felt things
Shifting everything was melting
Away oh away
And you gave us the most beautiful of days
Cause when it's always winter but never Christmas
Sometimes it feels like you're not with us
But deep inside our hearts we know
That you are here and we will not lose hope
And see those very first few flakes of snow
And later on we can go outside
And create the impression of an angel that just fell from the sky
When February rolls around I'll roll my eyes
Turn a cold shoulder to these even colder skies
And by the fire my heart it heaves a sigh
For the green grass waiting on the other side
It's always winter but never Christmas
It seems this curse just can't be lifted
Yet in the midst of all this ice and snow
Our hearts stay warm cause they are filled with hope
It'd be so nice to look out the window
And see the leaves on the trees begin to show
The birds would congregate and sing
A song of birth a song of newer things
The wind would calm and the sun would shine
I'd go outside and I'd squint my eyes
But for now I will simply just withdraw
Sit here and wish for this world to thaw
It's always winter but never Christmas
It seems this curse just can't be lifted
Yet in the midst of all this ice and snow
Our hearts stay warm cause they are filled with hope
And everything it changed overnight
This dying world you brought it back to life
And deep inside I felt things
Shifting everything was melting
Away oh away
And you gave us the most beautiful of days
Cause when it's always winter but never Christmas
Sometimes it feels like you're not with us
But deep inside our hearts we know
That you are here and we will not lose hope
Snow Y'all!
I'm only about a week or two late in announcing it...
It snowed y'all. In Cypress, Texas. It snowed.
Jude came home from school one afternoon and said, "mom, it's going to snow tonight." I told him that sounds nice buddy but I don't think it is supposed to snow. Jude said, "mom, the kids in our class made a circle and we prayed it would snow and it is going to snow." I just made some non-committal sound. I mean I wasn't going to tell the kid it wasn't going to snow but I knew it was not going to snow - it doesn't do that in Cypress, Texas.
Chad called me at 9pm and said it's snowing. I looked out the window. Nope not at our house it was rain.
10pm and we are headed to bed and I glanced out the window. It was snowing. For real. Snow.
I woke Jude up. He prayed it would snow. It snowed. I had to let him see it and I thought there is no way the snow is going to last.
5am I hear little voices squealing in excitement and they are outside. We had the alarm on and no doors had been opened. The boys had bundled up and climbed out the dog door to see the snow. They were so excited. Asher melted down within 5 minutes because he didn't know it would be cold. I mean we live in Texas and it doesn't snow here so I feel like that is an understandable reaction.
As amazing as it was to see snow there were some definite draw backs.
1. I had woke Jude and Shiloh up in the middle of the night, bad idea to interrupt sleep.
2. The kids woke up at 5am and by 7am they were 100% done with the day and the rest of the day was terrible.
2.The snow was surprisingly cold and did not bring joy to Asher who melted down every time he touched it.
4.The snow melted by noon and Jude and Shiloh kept melting down because the snow was gone.
5. Finally I still have a tiny snowman Jude made in my freezer.
I am thankful I live in Cypress where it almost never, maybe every 7, 9 or 11 (there is some debate over how long it's been) years it snows.
It snowed y'all. In Cypress, Texas. It snowed.
Jude came home from school one afternoon and said, "mom, it's going to snow tonight." I told him that sounds nice buddy but I don't think it is supposed to snow. Jude said, "mom, the kids in our class made a circle and we prayed it would snow and it is going to snow." I just made some non-committal sound. I mean I wasn't going to tell the kid it wasn't going to snow but I knew it was not going to snow - it doesn't do that in Cypress, Texas.
Chad called me at 9pm and said it's snowing. I looked out the window. Nope not at our house it was rain.
10pm and we are headed to bed and I glanced out the window. It was snowing. For real. Snow.
I woke Jude up. He prayed it would snow. It snowed. I had to let him see it and I thought there is no way the snow is going to last.
5am I hear little voices squealing in excitement and they are outside. We had the alarm on and no doors had been opened. The boys had bundled up and climbed out the dog door to see the snow. They were so excited. Asher melted down within 5 minutes because he didn't know it would be cold. I mean we live in Texas and it doesn't snow here so I feel like that is an understandable reaction.
As amazing as it was to see snow there were some definite draw backs.
1. I had woke Jude and Shiloh up in the middle of the night, bad idea to interrupt sleep.
2. The kids woke up at 5am and by 7am they were 100% done with the day and the rest of the day was terrible.
2.The snow was surprisingly cold and did not bring joy to Asher who melted down every time he touched it.
4.The snow melted by noon and Jude and Shiloh kept melting down because the snow was gone.
5. Finally I still have a tiny snowman Jude made in my freezer.
I am thankful I live in Cypress where it almost never, maybe every 7, 9 or 11 (there is some debate over how long it's been) years it snows.
I'm still not on FaceBook y'all so if you comment there I won't know.
Tuesday, December 5, 2017
Wise Men
The Wise Men are back!
The boys wake up each morning way to early with way to much excitement to find out what the Wise Men have been up to during the night and what they will learn that day...this year the Wise Men are teaching us a name of Jesus every day (and yes they taught us this 2 or 3 years ago but Momma needs to recycle!):
The boys wake up each morning way to early with way to much excitement to find out what the Wise Men have been up to during the night and what they will learn that day...this year the Wise Men are teaching us a name of Jesus every day (and yes they taught us this 2 or 3 years ago but Momma needs to recycle!):
Letter from the Wise Men on December 1st asking the boys to join them on a journey to discover the names of Jesus. The also taught the boys that Jesus is Wonderful Counselor. They had the boys take turns doing an obstacle course blindfolded and then learned just as they had to trust the one giving them directions so the have to trust Jesus.
Mighty God. We caught the Wise Men hanging out with the mightiest people they could think of - Lego Ninja and Lego super heroes - and pulling out the superhero costumes. They taught us Jesus is the mightiest of them all and is the only one who can truly save us.
Everlasting Father. Wisemen had us playing Father/Son matching game. We learned Jesus is our everlasting Father.
Prince of Peace. We found the Wise Men holding out the white flag and bringing peace to the pirates. Jesus is the only one who can bring peace between us and God. After we prayed I asked Asher what he was doing with the two pirates in his hand, he said, "these two are not having peace." And the two pirates proceeded to fight.
Alpha and Omega. The Wise Men used magnet letters and alphabet puzzles to teach the boys that Jesus is the first and last, the beginning and the end. They had us pray for the Oldest boy and the youngest boy - Asher prayed for all the boys.
Advent is the best! We can't wait to find out all the things the Wise Men will teach us and to celebrate every day the coming of our Lord Jesus!
P.S. - I'm still not on FaceBook, so if you comment I won't see it....
P.S. - I'm still not on FaceBook, so if you comment I won't see it....
Thursday, November 16, 2017
Updates
Well the journey with Ezra continues...
Not much has changed since the post "Nitty Gritty."
We left ECI at the end of July. By the end of August Ezra started PT with a physical therapist here in Cypress. I am very grateful for our therapist but he is not a pediatric physical therapist and I really think Ezra would do better with a pediatric therapist however there is not one in our area accepting new patients right now (we are on some waiting lists) so we will be thankful for what he is receiving and pray for an opening with a pediatric therapist!
Ezra will finally start Speech and OT next week! He received a second set of evaluations on Tuesday and Wednesday this week and I am really excited to get his therapy going. For those who don't know after leaving ECI it took me until September to find a place to do Speech and OT for Ezra but after the therapy place and the pediatrician office could not work together and tell me the truth (they both lied to me more than once) I decided to fire them both. I found a new family doctor, rather than a pediatrician, and a new therapy place.
Ezra's genetic testing results came in. There were 2 findings: 1. he has carrier status for a genetic condition but does not have the condition himself. 2. there was a variant of unknown significance (basically there is a variation in a gene that is known to cause a genetic condition but the variation Ezra has is not the variation that is known to cause the genetic condition - it is not known if the specific variation in Ezra's gene causes anything). We met with a geneticist and she does not think that Ezra has any known genetic conditions. The 2 findings in Ezra's genes are actually 2 findings that are also in my genes and I don't have the conditions so it is extremely unlikely that Ezra does. The geneticist does not think either of the 2 findings are the cause of Ezra's developmental delays. The geneticist recommended a renal ultrasound and echocardiogram based on the variant of unknown significance as that specific gene when changed/mutated can cause severe organ issues and while she does not think Ezra has any organ issues she thinks it worthwhile to get his organs checked out and cleared. We have taken care or the renal ultrasound and are waiting on the echocardiogram.
Ezra's nuerologist ordered an MRI and Ezra was scheduled for an MRI in November but due to his having a fever the day before we had to reschedule and it it now set for December 14.
I will be relieved when we can get all the testing recommended done and out of the way. I am thankful that we have all his therapies going, PT, Speech and OT but I am hoping we can get pediatric PT soon and that we can find a better time for OT (only available time right now is on a Wednesday - when I have Shiloh and Asher - during Ezra's normal nap time - sounds like a recipe for disaster...). If you are going to pray (and I ask that you do) please pray for pediatric PT and a better OT time. And mostly for Ezra's full healing and catching up on his developmental milestones!
I'm taking a facebook break and Chad never checks facebook so unless you comment on the blog, by email or txt me I will not know you have commented and as nice as your thoughts are I won't see them. I am only sharing this on facebook as I know a lot of people get to the blog from there.
Thursday, October 12, 2017
Sonshine MDO
We are trying a new thing this year: Sonshine MDO (Mother's Day Out)!
So far it is a big hit! Shiloh and Asher are loving going to "school" Tuesday and Thursday from 9-2, and I am loving that they are getting to do arts and crafts, science stuff, read, sing songs and most importantly be loved on and taught about Jesus.
I never really considered sending the boys to something like it partly due to the cost and mostly due to the fact that I love being home with the boys. I like to do all the fun stuff mentioned above but with Ezra in the mix, mostly all the therapy and work I need to do with him it was a huge struggle to do any of that stuff.
What pushed us into MDO was that I finally found a place to do Ezra's OT and Speech therapy but it is 30 minutes away and he will hopefully have back to back sessions, 2 hours worth of therapy, 2 times a week and thinking of taking Shiloh and Asher with me sent me into a panic. I knew of Sonshine MDO at Fairfield Baptist Church through a couple of friends so I emailed the director and asked if they had any openings (I was a little nervous as MDO was 1 week away from starting) and Jesus is so good there was 1 opening in the bridge class for Shiloh and a 3 year old had withdrawn that morning so there was 1 opening for Asher! Yay!
I'm praying that Wishing Well Pediatric Therapy can see Ezra on Tuesdays and Thursdays while Shiloh and Asher are at mother's day out. I am also praying that the insurance company will quickly approve the therapy (the evaluation was almost 3.5 weeks ago) and I know the forms where finally sent on Monday. Come on people Ezra needs his therapy!
Below are some fun pictures form the fun times at MDO!
So far it is a big hit! Shiloh and Asher are loving going to "school" Tuesday and Thursday from 9-2, and I am loving that they are getting to do arts and crafts, science stuff, read, sing songs and most importantly be loved on and taught about Jesus.
I never really considered sending the boys to something like it partly due to the cost and mostly due to the fact that I love being home with the boys. I like to do all the fun stuff mentioned above but with Ezra in the mix, mostly all the therapy and work I need to do with him it was a huge struggle to do any of that stuff.
What pushed us into MDO was that I finally found a place to do Ezra's OT and Speech therapy but it is 30 minutes away and he will hopefully have back to back sessions, 2 hours worth of therapy, 2 times a week and thinking of taking Shiloh and Asher with me sent me into a panic. I knew of Sonshine MDO at Fairfield Baptist Church through a couple of friends so I emailed the director and asked if they had any openings (I was a little nervous as MDO was 1 week away from starting) and Jesus is so good there was 1 opening in the bridge class for Shiloh and a 3 year old had withdrawn that morning so there was 1 opening for Asher! Yay!
I'm praying that Wishing Well Pediatric Therapy can see Ezra on Tuesdays and Thursdays while Shiloh and Asher are at mother's day out. I am also praying that the insurance company will quickly approve the therapy (the evaluation was almost 3.5 weeks ago) and I know the forms where finally sent on Monday. Come on people Ezra needs his therapy!
Below are some fun pictures form the fun times at MDO!
First Day of MDO
Asher on the water side at Make Waves for Jesus Day
Tasty popsicle in Asher's favorite color
First trip down
Big smile!
Mom did you see my cannon ball?
Super cool anatomy lesson. Can you figure out what type of shoes Shiloh wore to MDO? Also the lungs are bubble wrap and the boys will pop a bubble and say, "oh no dad's lung collapsed."
Lego scarecrow at the Oil Ranch
Asher on the pony
First snow cone...
I think Ezra enjoyed it!
Mining for gemestones
We didn't find any gemstones....I wasn't going to go buy them...
Milking a cow
Train ride
Human hamsters
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