as long as possilbe

It all begin in April,
I took Haden to our favorite Doctor. The Rehabilitation Specialist.
It is the best doctor we have been referred to. She understands his body and his movements. 
She puts him on muscle relaxers, and strong ones, so Haden's spasticity does not limit him as much. She puts him in ankle braces and forwards him to therapies.

Anyhow, we have been a regular visitor of this doctor for at least 3 years now. 
I was expecting this appointment to go much like the last several.  
     "might need to consider … in the future, but he's looking good"

 Nope … within moments of her walking through the door .. it was "I don't like what I'm seeing here." 

We knew that his left foot was angling inward again, and that his movements were more stiff than he had been recently. But I just figured that he yet again needed a baclofen increase as he had been through a pretty recent growth spurt. 

By the time we left the appointment he had 3 x-rays, a request into insurance for fentanyl shots behind his knees, and then scheduled appointments back at genetics, and to an orthopedic surgeon.

I cried in the car, 
I thought he was doing "ok" 

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We were seen pretty quickly from a top Orthopedic Surgeon at Children's Hospital here in Denver. 
John came with me to this appointment.

We waited over an hour past our appointment time for the doctor to get to us. (This is a rare occurrence for us once we moved to Colorado) 

The doctor did not rush his time with us.

He looked at Haden and then said

"WE WANT TO KEEP HADEN AS MOBILE FOR AS LONG AS POSSILBE"

"HADEN WILL BE IN A WHEELCHAIR ……."
     
and that's the first time I heard those words … a wheelchair had never been a consideration
Haden runs … a lot.
He walks down the stairs.  
Sure he has leg cramps sometimes, but a wheelchair?

WAIT … WHAT DO YOU MEAN???
Thank God John was there, when I went silent and heard "wahhh wahh wahhh" he slowed the doctor with questions to get explanations and understanding. 

The doctor explained that it WOULD'T mean that Haden would lose the ability to walk, but that his spasticity (tightness) would be so severe that it is simply way to painful for him to move.

The doctor then showed us on Haden's legs that his knee caps are already beginning to be pulled out of alignment from he strain on his hamstrings. He showed us Haden's foot turn and how ligaments could be "crossed" at the ankle (through surgery) to help his foot be less "club like."
He told us that puberty and rapid growth will be Haden's biggest enemy. And that any signs of obesity will string his muscles more and send him to a wheelchair faster.   He told us about inserting stabilizing screws in Haden's kneecaps to prevent further dis-alignment when puberty gets closer. He told us about possible future 24/7 casting and bracing and I am sure the doctor said a whole lot more in the hour he spent with us. But "wheelchair by late adolescents" and "mobile for as long as possible" kept circling in my head.

Before we left he put Haden on a wait list for very specialized test called "gait lab"
It is way cool technology. They insert small sensor needles into Haden's legs and then using animatronics they monitor the muscles as he walks. (Like animatronics that movie productions use, but actually looking at what muscles are firing or not and when) After the testing a  big team of doctors and therapists review the findings and propose the next several years worth of treatments and surgeries.  This test will happen in early December.


I randomly would start to cry for several weeks following this appointment.
I even had a lady hug me at Sams club not knowing what my tears were for.


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In July we were finally able to be seen by Haden's Genetic doctor.

KDM5C is still considered pretty rare. And there is still very little known about it.

Our doctor looked at Haden and reviewed the medical notes from the rehabilitation Doctor and the orthopedic surgeon. 
She found that Haden's genetic condition is linked to "slowly progressive spastic paraplegia" 
And explained that this diagnosis fits all that the doctors are seeing in Haden and his movements. 
It means Haden WILL keep getting tighter, and he will end up in a wheelchair at some point. Baclofen, surgery, sedated muscle relaxing shots, lots of doctoring, and "mobile for as long as possible" has now become my new mission for him.

An answer to a question I never asked.
And I cried before even leaving the doctors office


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There have been so many tears these past few months. 
So many moments of working myself to a stronger point of acceptance.

I know we are in the right spot for Haden to get amazing care from truly wonderful doctors.
I am finally to a point where I can say "slowly progressive spastic paraplegia" without my voice cracking and needing to wipe away tears.



And I only cried for a few minutes after the DMV to get us a handicap placard for Haden.



It's a whole different world of emotions raising special needs kids.
There is so much pain and yet so much joy. 
And there are God's people who will love us though it all.

I almost had a group of friends ...

It was almost a 6 months ago now, and I have mostly healed myself from the embarrassment from the whole debacale.

You see, I just wanted to be a light. I wanted to be an encouragement....but I forgot for a moment that my story is nothing like anyone else in that room.  My life of raising Haden is complex and deep. And unless you are living life with me … you do not understand or know the depth or complexities of our chaos.


So here it is … the story of the time I almost made friends in Colorado.

It was at a weekly bible study. It was ladies night so the husbands were at home getting the kids fed and put to bed. If John had just been by my side, he would have explained it better.  

I was the mom there with the oldest kids. The others all still deep in toddlerhood with several moms in midst of an infant and toddler.  whoof …. that was a rough time to live through …. I remember. 
After the study while everyone was commiserating about the trials, and the mom guilt, and the crying … so much crying.  

That's when I did it.

I said all the wrong things.

I just wanted to give hope that days get better and before you know it, you are living life WITH your kids not exhausting yourself by serving you kids. 

I told them a story of when I was a mom of much younger sons. I was at MY end, and a few moments before John could get home from work to rescue me … I locked my kid in the bathroom.  
Totally trying to communicate that there are days you loose yourself … and then you rest, and have help … and you are a good again. 

What I forgot most of all, is that all those ladies in that room  DO NOT KNOW OUR STORY.  

They do not know ME, and the UGLY TRUTHS I was living through in those moments. 

They did not know that this was a moment in time when Haden's potty-training was at an all time worst. (remember here that because of Haden's mental disabilities it took him a full 3 years to get trained up) He would poop in his underwear at nap or early mornings and then smear the feces through the carpets, on his toys, and all over the door, windows, and walls.   
It was at a time when the carpet steamer didn't even get unplugged for months.
I can handle a lot, but this multiple times a day - smelly clean up, and the realization that my child is not going to be "normal" was sending me into panic attacks. Not the type you see on tv where people loose their breath and are ok moments later … but a scary -  mom as small on the floor as I could get, screaming in pain and pulling my hair out in the fist fulls -  just trying to reliever the emotional pain of all the uncertainty and chaos.  
And more that I had a older son testing limits.
Yes, I locked my kids in a safe spot … and I held in my panic attack until I was in a safe space for them not to see me.  And I reached out for help. and I had a break.  Yes. I broke, and I healed, and was still a good mom through all of that. 

All I wanted to say to them was there are days you stick your kid in a bathroom where they are safe to be ok, and there are other days you go to a park for lunch. 

But that's not what they heard.

Because they did not KNOW ME.
They did NOT know my LIFE STORY.

I noticed within the conversation that they all changed their thinking of me.
I wasn't going to be accepted into their group after that.

I have seen a few of these ladies around town in the past months. 
I see them look at me with wide, terrified, eyes and turn the other way as fast as they can.
I see them - see what they think I am - not see me.

Because of this moment … I left the church we were trying to fit into for the prior year.
  And we are not missed there,  even though we do miss going.


And I have come to realization that my life is not in a season of loneliness 
    ... raising special needs kids means living a life of loneliness. 

You cannot understand my story unless you live it with me. 

I do not write this for pity, but to finish healing.
I do have some friends … and a handful of people here in Colorado that will say "hi" to me. 
And I am grateful for all the moments those that love me try to understand my world … but all I live through is not easy, and I understand that it is too much for most to even ask me about. Becausethere is deep heartache, there is panic, there is major fear, there is crying in lots of parking lots and showers, and there is joy that after 3 very LONG years there is new paint on Haden's bedroom wall.