Droopy eyelids, small kidneys, & stiff muscles.
A *very* basic summary of the past few weeks in our house.
There's a definite ebb and flow to life as the parent to a child who has special needs...
it seems as if weeks and weeks go by when your *normal* is just that... normal... manageable....
When the 'disorders' and 'delays' somehow disappear in the *normal* that is your day to day...
your errands, and meal times, and play dates, and nap-times, and car-time sing-a-longs.
And then the flow.
The flow....
is never a flow.
It's more like a dam bursts....
literally...
One routine follow-up... one check-up... one meeting...
it bursts your bubble of *normal* and throws off everything you *think* you know.
Our ebb is over.
Hello flow.
Three years old is tough, friends...
in the world of every toddler, it's difficult... but in the world of a child who has special needs....
it's a turning point.
The past few weeks have been full of our *normal*, routine check-ups with various specialists (we have 17), a few new follow-ups, regular therapy sessions, as well as yearly evaluations, and pre-school testing and IEP meetings.
Our flow.
Hunter is a trooper... he works hard through every therapy session, patiently follows directions for whatever specialist is examining him, and keeps himself occupied while we discuss *findings* and *recommendations*.
And those things... we discuss them as if he's not there... as if he's not listening and comprehending.
As if.
Lately, my head spends most of the day analyzing and dissecting my son's movements and actions and sounds... It's impossible not to let the words of his team of professionals slither their way in to our *normal*....
and interrupt our ebb.
So we flow...
my mind flows daily... and nightly, too... my anxiety is high as I anticipate the next meeting or evaluation, the next appointment or set of labs....
it's all consuming, this flow.
And it's so easy to think that this... this flow... is only affecting us... mommy and daddy. We're the ones who understand the implications of every diagnosis and ever recommendation... we're the ones who handle the follow ups and make arrangements for the other kids who can't come to certain appointments... we're the ones who consider what the future looks like for him and for our family while we juggle the necessary therapies and schedules to make sure he is receiving every possible resource that's available to him.
The flow.
A few weeks ago we posted a private plea for prayer on our personal Facebook pages... we were feeling desperate as we awaited lab results that would tell us if our son was in the middle stages of kidney failure. All labs we had received at that time led us to believe that his one healthy, growing kidney was failing... and when you have one kidney and that kidney fails...
the flow.
A few days later, Hunter was released from Physical Therapy for a much-deserved break... until the Fall when it will be necessary to cast his legs in order to break some bad habits he has developed that are causing his muscles to tighten...
the flow.
Two days later we sat in his Opthamologists office and heard about how his vision is excellent.... except that his moderate far-sightedness and his droopy eyelids will needs to be addressed at some time in the future...
the flow.
And then his IEP meetings with the special school district. Hunter was amazing through 3 hours of 'play' which being observed by a team of 6... OT's, SLP's, child psychologists, PT's, and special needs teachers who would ultimately determine the level of his developmental, speech, and physical delays in order to determine what resources he qualifies for in next year's pre-school program...
the flow.
In all of these meetings and evals and appointments, Hunter plays and listens and does what he's asked and does it all with such an amazing attitude.
He's 3.... so this flow.... he's not aware of it...
he can't be.
He's 3.
Hearing loss, Global Developmental Delays, operates on a 15-24 month level, non-verbal...
he can't understand... can't know...
Right?!
While Joey makes it to every appointment he can, this ebb and flow of appointments and diagnoses and testing is 'our thing'... mine and Hunter's. We do it all together... every time. We do it all together and I carry it all on my shoulders... that's my job... my privilege. And it's not easy... but it's an honor to be 'that' for him.
A few nights ago, the kids had been in bed for almost 2 hours... the house was quiet....
and then I heard Hunter cry...
it was his sad cry.
Do you know the one?
The one that starts as a sob and slowly turns into a sound that rips your heart at the seams ...
it isn't angry... or manipulative... or hungry... or 'wet'.....
it's so sad.
Before I could even respond, Joey went upstairs and held him for a while... he loves that time with his babies... he rocked him, sang to him...
"Are you ready to lay back down and go ni-night?'
"Yeah", he said.
Joey went to the gym shortly after and again the house was quiet...
the flow.
His cry was worse... it was high-pitch and gut-wrenching.
It was my turn....
and As I walked upstairs, 'slightly' annoyed that my 'job' was not yet done for the day... 'slightly' irritated that someone needed me, yet again... and more than slightly angry that Joey had gone to the gym when he did (even though he more than deserved his time!)... my irritation grew as I climbed the stairs to his room and I was prepared to pat his butt a few times, tell him he's ok and that I would see him in the morning, "I love you, goodnight".
He was standing in his crib when I opened the door and his arms went out for me immediately...
"Ok fine", I thought... "Just for a minute."
I picked him up and he clung to me as if his life depended on my strength and solitude to save him... to sustain him.
His sobs shook me to my core...
this wasn't sadness...
this was defeat.
My precious 3 year old... the one who recently consumed my every thought, whom I have lost so much sleep over, who's future I worry about daily, whom I invest so much of my time and energy into, the one who I carry all of this for....
the one whom I thought I had been feeling all of these feelings FOR over the past few weeks...
He was defeated, too.
And as I held him, the flow flooded over me...
Droopy eyelids, small kidneys, stiff muscles, casts, blood work, talking devices, 15-24 months, and on and on and on...
he had heard it all... he had felt it all...
and he was done.
He was drowning in the flow.
And so I layed down with him on my chest and I rubbed his back...
I cried as I did my best to speak life back into him...
"Hunter, you are strong."
"You are brave."
"Your life matters."
"You are so loved."
"You are not alone... you'll never be alone."
"We do this together, baby boy."
"We'll always do this together."
And I prayed over him...
"Thank you for Hunter's joy... for his life... thank you for choosing him for me. Jesus, he is so strong... please keep him strong. He is so brave and some of our days are so hard... please protect his spirit. Let Hunter feel you. Amen."
We sang 'his' song and I laid him back down...
he grabbed his blanky, rolled over, and went to sleep.
Some of our days are really hard... and it's easy for me to get caught up in dividing my time between all of my babies, managing invoices and bills, scheduling appointments, reminding children to use the words they know, trying to understand cues from those who don't have spoken words, making our days fun and playful, practicing patience, and finding time for myself and my marriage...
there are days when finding a balance is almost impossible...
And it's so easy to make these things about me....About keeping myself afloat in our flow.
My son reminded me in the most precious way that he knows... he feels... he hears (a miracle for this boy!)... he understands...
And he reminded me that we all need those words... affirmative, life-speaking words that sustain us and keep us going when that sad cry threatens to break through...
and I'm thankful for the sad cry that allowed me to speak life back into him...
because of the One who breathed life into us both.
Whoever believes in me, as Scripture has said, rivers of living water will flow from within them."
John 7:38
Another thing....
Hunter's kidney is strong... in fact, it's perfect.
And God is so so good!
A *very* basic summary of the past few weeks in our house.
There's a definite ebb and flow to life as the parent to a child who has special needs...
it seems as if weeks and weeks go by when your *normal* is just that... normal... manageable....
When the 'disorders' and 'delays' somehow disappear in the *normal* that is your day to day...
your errands, and meal times, and play dates, and nap-times, and car-time sing-a-longs.
And then the flow.
The flow....
is never a flow.
It's more like a dam bursts....
literally...
One routine follow-up... one check-up... one meeting...
it bursts your bubble of *normal* and throws off everything you *think* you know.
Our ebb is over.
Hello flow.
Three years old is tough, friends...
in the world of every toddler, it's difficult... but in the world of a child who has special needs....
it's a turning point.
The past few weeks have been full of our *normal*, routine check-ups with various specialists (we have 17), a few new follow-ups, regular therapy sessions, as well as yearly evaluations, and pre-school testing and IEP meetings.
Our flow.
Hunter is a trooper... he works hard through every therapy session, patiently follows directions for whatever specialist is examining him, and keeps himself occupied while we discuss *findings* and *recommendations*.
And those things... we discuss them as if he's not there... as if he's not listening and comprehending.
As if.
Lately, my head spends most of the day analyzing and dissecting my son's movements and actions and sounds... It's impossible not to let the words of his team of professionals slither their way in to our *normal*....
and interrupt our ebb.
So we flow...
my mind flows daily... and nightly, too... my anxiety is high as I anticipate the next meeting or evaluation, the next appointment or set of labs....
it's all consuming, this flow.
And it's so easy to think that this... this flow... is only affecting us... mommy and daddy. We're the ones who understand the implications of every diagnosis and ever recommendation... we're the ones who handle the follow ups and make arrangements for the other kids who can't come to certain appointments... we're the ones who consider what the future looks like for him and for our family while we juggle the necessary therapies and schedules to make sure he is receiving every possible resource that's available to him.
The flow.
A few weeks ago we posted a private plea for prayer on our personal Facebook pages... we were feeling desperate as we awaited lab results that would tell us if our son was in the middle stages of kidney failure. All labs we had received at that time led us to believe that his one healthy, growing kidney was failing... and when you have one kidney and that kidney fails...
the flow.
A few days later, Hunter was released from Physical Therapy for a much-deserved break... until the Fall when it will be necessary to cast his legs in order to break some bad habits he has developed that are causing his muscles to tighten...
the flow.
Two days later we sat in his Opthamologists office and heard about how his vision is excellent.... except that his moderate far-sightedness and his droopy eyelids will needs to be addressed at some time in the future...
the flow.
And then his IEP meetings with the special school district. Hunter was amazing through 3 hours of 'play' which being observed by a team of 6... OT's, SLP's, child psychologists, PT's, and special needs teachers who would ultimately determine the level of his developmental, speech, and physical delays in order to determine what resources he qualifies for in next year's pre-school program...
the flow.
In all of these meetings and evals and appointments, Hunter plays and listens and does what he's asked and does it all with such an amazing attitude.
He's 3.... so this flow.... he's not aware of it...
he can't be.
He's 3.
Hearing loss, Global Developmental Delays, operates on a 15-24 month level, non-verbal...
he can't understand... can't know...
Right?!
While Joey makes it to every appointment he can, this ebb and flow of appointments and diagnoses and testing is 'our thing'... mine and Hunter's. We do it all together... every time. We do it all together and I carry it all on my shoulders... that's my job... my privilege. And it's not easy... but it's an honor to be 'that' for him.
A few nights ago, the kids had been in bed for almost 2 hours... the house was quiet....
and then I heard Hunter cry...
it was his sad cry.
Do you know the one?
The one that starts as a sob and slowly turns into a sound that rips your heart at the seams ...
it isn't angry... or manipulative... or hungry... or 'wet'.....
it's so sad.
Before I could even respond, Joey went upstairs and held him for a while... he loves that time with his babies... he rocked him, sang to him...
"Are you ready to lay back down and go ni-night?'
"Yeah", he said.
Joey went to the gym shortly after and again the house was quiet...
the flow.
His cry was worse... it was high-pitch and gut-wrenching.
It was my turn....
and As I walked upstairs, 'slightly' annoyed that my 'job' was not yet done for the day... 'slightly' irritated that someone needed me, yet again... and more than slightly angry that Joey had gone to the gym when he did (even though he more than deserved his time!)... my irritation grew as I climbed the stairs to his room and I was prepared to pat his butt a few times, tell him he's ok and that I would see him in the morning, "I love you, goodnight".
He was standing in his crib when I opened the door and his arms went out for me immediately...
"Ok fine", I thought... "Just for a minute."
I picked him up and he clung to me as if his life depended on my strength and solitude to save him... to sustain him.
His sobs shook me to my core...
this wasn't sadness...
this was defeat.
My precious 3 year old... the one who recently consumed my every thought, whom I have lost so much sleep over, who's future I worry about daily, whom I invest so much of my time and energy into, the one who I carry all of this for....
the one whom I thought I had been feeling all of these feelings FOR over the past few weeks...
He was defeated, too.
And as I held him, the flow flooded over me...
Droopy eyelids, small kidneys, stiff muscles, casts, blood work, talking devices, 15-24 months, and on and on and on...
he had heard it all... he had felt it all...
and he was done.
He was drowning in the flow.
And so I layed down with him on my chest and I rubbed his back...
I cried as I did my best to speak life back into him...
"Hunter, you are strong."
"You are brave."
"Your life matters."
"You are so loved."
"You are not alone... you'll never be alone."
"We do this together, baby boy."
"We'll always do this together."
And I prayed over him...
"Thank you for Hunter's joy... for his life... thank you for choosing him for me. Jesus, he is so strong... please keep him strong. He is so brave and some of our days are so hard... please protect his spirit. Let Hunter feel you. Amen."
We sang 'his' song and I laid him back down...
he grabbed his blanky, rolled over, and went to sleep.
Some of our days are really hard... and it's easy for me to get caught up in dividing my time between all of my babies, managing invoices and bills, scheduling appointments, reminding children to use the words they know, trying to understand cues from those who don't have spoken words, making our days fun and playful, practicing patience, and finding time for myself and my marriage...
there are days when finding a balance is almost impossible...
And it's so easy to make these things about me....About keeping myself afloat in our flow.
My son reminded me in the most precious way that he knows... he feels... he hears (a miracle for this boy!)... he understands...
And he reminded me that we all need those words... affirmative, life-speaking words that sustain us and keep us going when that sad cry threatens to break through...
and I'm thankful for the sad cry that allowed me to speak life back into him...
because of the One who breathed life into us both.
Whoever believes in me, as Scripture has said, rivers of living water will flow from within them."
John 7:38
Another thing....
Hunter's kidney is strong... in fact, it's perfect.
And God is so so good!
