I don't usually - or haven't before - came to this blog with an I don't want to attitude.
Typically, blogging has been a release for me. A time to let all those thoughts out and just purge my soul of what I want to say but just couldn't quite do it with my speech.
Lately, I feel so defeated when I sit down at my computer and open up blogger.
Everyone likes a champion.
Everyone likes a story of someone who has defeated the odds and WON!
No one likes when the champion has to return to the fight and the odds are stacked against them again.
That's probably why sequels tend to tank when it comes to movie productions...but i digress...
I felt very much like a defeated champion on Thursday.
We had to return to Rehab Therapy after a 3 year reprieve.
We had to return to a place that I hoped I would never ever have to return to.
All Wednesday night, I was a mess thinking about having to walk that hall...go down the elevator and return to a place that harbored so many hard times - even with the good outcome.
Thursday morning came and instead of worrying about how I would feel when we returned to that place, I had to deal with the reality of life. My car broke down. And I scrambled to find a replacement to get her to her appointment. We walked 3 blocks in -40 windchill to find the replacement and get on the road again.
I wanted to give in and just go home. It was not an option. She needed to be at this appointment and I was going to get her there. The weather was cold. The roads were icy.
We arrived 15 minutes late and we rushed through that hall, hurried in the elevator and into the appointment.
I didn't have time for the dramatic re-entrance.
We spent over 2 hours at that appointment learning and testing Maddy.
As I talked with Stephanie, as I listed out all the sensory concerns and issues that we were dealing with, they seemed to pile upon each other like Mary Poppins unpacking her suitcase. How did they all fit in that tiny little package?
Stephanie was great, as always, and made notes while simultaneously testing Maddy's OT skills. When I finished, I could physically feel my stomach sink.
How did we get here?
An image popped into my mind.
A sunny sky was over us as we unloaded everyone on to the beach for a warm day in the sand and the water. Maddy found her way to the shore and we watched as she played in the low tide. Splashing and having fun. The mother in me worried a bit because she can not swim, but I relaxed as the water was low and there was no concern. Flash forward to minutes later, the tide rolls in and she is neck deep in the water, thrashing for help and she is miles from the shore.
How did she get so deep so quick? Where have I been?
The mother in me is furious with myself. How could I possibly have watched her become so distracted with the sensory world that it got this bad? What have I been doing all this time?
Many different tests later and Maddy was allowed to go play for a bit in the ball pit. I focused on everything that Stephanie was trying to tell me. She failed the sensory tests...all of them. We will have to go back to square one.
The Moro Reflex
I invite you to read this article about what the Moro Reflex is.
We need to start back at the basics. She clearly has an un-integrated Moro Reflex. So she is learning a technique called "Starfish" that she repeats 3 times a day for 30 days to help integrate her Moro Reflex again.
Here is a youtube video of what Starfish is.
I'm still trying to wrap my mind around it all and that is why I am redirecting you to other articles. I don't know why I can't seem to explain it in a clear manner...but i can't - so please read/watch those.
Meanwhile...
We go back to see Dr. MAL tomorrow.
We go for speech evals and more OT information in 2 weeks.
We are hoping to meet with the hospital social worker as well...we have no services anymore because Maddy has aged out of everything.
So not only are we having to reintegrate back into the world of therapy - we also need to rebegin our lifestyle of trailblazers.
I am not, at this time, going to go into details about services and costs as I don't have all the information yet. What I am familiar with, Maddy has aged out of....
What I do know is that her diagnosis is changing and it's heart breaking.
And isolating.
I really just want my happy Maddy back. She is not happy these days and that is the most heart breaking part of it. Anyone who knows Maddy can describe her as "happy" and when we first lost her - we lost the happy....and to see the happy disappearing makes it disheartening.
A dear friend called me today to say that "you didn't miss anything! We haven't noticed huge changes either until recently...so don't take responsibility for something that wasn't there. You didn't miss anything. You jumped to alert the minute things did seem different."
That means alot. As a mother...I feel like I need to carry the 100% burden of missing things. It is an impossible task. I am exceptionally hard on myself. I don't want to fail her - or any of my kids. I want her to not just survive life but to LOVE it. The good, the bad, the hard, the easy, ALL of it. To experience it. And be joyous that she has a Savior who loves her and will someday call her home. And to see the smile fade from her face and the happy laughter to leave her lungs makes me sick. To see her in tears and frowns destroys me. No - not all kids will be happy 99% of the time. But Maddy usually pulled a solid 95%....this is so not her.
I just want her. Nothing less.
Typically, blogging has been a release for me. A time to let all those thoughts out and just purge my soul of what I want to say but just couldn't quite do it with my speech.
Lately, I feel so defeated when I sit down at my computer and open up blogger.
Everyone likes a champion.
Everyone likes a story of someone who has defeated the odds and WON!
No one likes when the champion has to return to the fight and the odds are stacked against them again.
That's probably why sequels tend to tank when it comes to movie productions...but i digress...
I felt very much like a defeated champion on Thursday.
We had to return to Rehab Therapy after a 3 year reprieve.
We had to return to a place that I hoped I would never ever have to return to.
All Wednesday night, I was a mess thinking about having to walk that hall...go down the elevator and return to a place that harbored so many hard times - even with the good outcome.
Thursday morning came and instead of worrying about how I would feel when we returned to that place, I had to deal with the reality of life. My car broke down. And I scrambled to find a replacement to get her to her appointment. We walked 3 blocks in -40 windchill to find the replacement and get on the road again.
I wanted to give in and just go home. It was not an option. She needed to be at this appointment and I was going to get her there. The weather was cold. The roads were icy.
We arrived 15 minutes late and we rushed through that hall, hurried in the elevator and into the appointment.
I didn't have time for the dramatic re-entrance.
We spent over 2 hours at that appointment learning and testing Maddy.
As I talked with Stephanie, as I listed out all the sensory concerns and issues that we were dealing with, they seemed to pile upon each other like Mary Poppins unpacking her suitcase. How did they all fit in that tiny little package?
Stephanie was great, as always, and made notes while simultaneously testing Maddy's OT skills. When I finished, I could physically feel my stomach sink.
How did we get here?
An image popped into my mind.
A sunny sky was over us as we unloaded everyone on to the beach for a warm day in the sand and the water. Maddy found her way to the shore and we watched as she played in the low tide. Splashing and having fun. The mother in me worried a bit because she can not swim, but I relaxed as the water was low and there was no concern. Flash forward to minutes later, the tide rolls in and she is neck deep in the water, thrashing for help and she is miles from the shore.
How did she get so deep so quick? Where have I been?
The mother in me is furious with myself. How could I possibly have watched her become so distracted with the sensory world that it got this bad? What have I been doing all this time?
Many different tests later and Maddy was allowed to go play for a bit in the ball pit. I focused on everything that Stephanie was trying to tell me. She failed the sensory tests...all of them. We will have to go back to square one.
The Moro Reflex
I invite you to read this article about what the Moro Reflex is.
We need to start back at the basics. She clearly has an un-integrated Moro Reflex. So she is learning a technique called "Starfish" that she repeats 3 times a day for 30 days to help integrate her Moro Reflex again.
Here is a youtube video of what Starfish is.
I'm still trying to wrap my mind around it all and that is why I am redirecting you to other articles. I don't know why I can't seem to explain it in a clear manner...but i can't - so please read/watch those.
Meanwhile...
We go back to see Dr. MAL tomorrow.
We go for speech evals and more OT information in 2 weeks.
We are hoping to meet with the hospital social worker as well...we have no services anymore because Maddy has aged out of everything.
So not only are we having to reintegrate back into the world of therapy - we also need to rebegin our lifestyle of trailblazers.
I am not, at this time, going to go into details about services and costs as I don't have all the information yet. What I am familiar with, Maddy has aged out of....
What I do know is that her diagnosis is changing and it's heart breaking.
And isolating.
I really just want my happy Maddy back. She is not happy these days and that is the most heart breaking part of it. Anyone who knows Maddy can describe her as "happy" and when we first lost her - we lost the happy....and to see the happy disappearing makes it disheartening.
A dear friend called me today to say that "you didn't miss anything! We haven't noticed huge changes either until recently...so don't take responsibility for something that wasn't there. You didn't miss anything. You jumped to alert the minute things did seem different."
That means alot. As a mother...I feel like I need to carry the 100% burden of missing things. It is an impossible task. I am exceptionally hard on myself. I don't want to fail her - or any of my kids. I want her to not just survive life but to LOVE it. The good, the bad, the hard, the easy, ALL of it. To experience it. And be joyous that she has a Savior who loves her and will someday call her home. And to see the smile fade from her face and the happy laughter to leave her lungs makes me sick. To see her in tears and frowns destroys me. No - not all kids will be happy 99% of the time. But Maddy usually pulled a solid 95%....this is so not her.
I just want her. Nothing less.
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