Sunday, May 27, 2012

Special Needs And Nursery

Today I took Charlotte into nursery which was very small because of the holiday weekend.
And most of the leaders were gone, enjoying their weekend as well.
And so I decided to stay and help.
But my help wasn't needed too much because of the lack of children.
So I sat and played with the puzzles, as the few families, who were there, trickled in.
It was so nice to be alone with Charlotte. Totally focused on HER.
And after a few minutes, Tom walked passed the door pushing
Bradley in his stroller with the oxygen tank below.
And the thought suddenly came to me that in
8 months Bradley is going to be old enough to enter nursery!
And that thought almost blew my mind.
All of my children are growing up WAY TOO FAST!

And I've heard people express worry about their babies walking in time to go into nursery.
But with Bradley I'd like him to at least hold up his head by then.
All three of my first children, NEVER used the stroller at church.
But Bradley is using it more the bigger he gets.
And I cannot use the older child stroller because he slumps over in it.
I still use the infant seat snapped into the stroller, because he can lay back and it supports him better.

And by the time Bradley enters Nursery, we should have his pediatric wheelchair.
And I'm sure he'll be pretty comfy in it.
And I wonder what it will be like to go and "park" him in nursery.
Oh, this is becoming an interesting journey!

And I came home and told Tom my thoughts about nursery and Bradley.
And Tom said,
 "Well I've not even thought about that; but we could just take him to Sunday School with us."

And I said, "nooooooo"
And I explained that if we want Bradley to be as normal as possible we have to 
as normal as possible and do the things his peers are doing.
Even if that means going and "parking" him in nursery.
We of course will need a nursery leader who is comfortable with all that Bradley is too.
But my feeling is that the right leader, will be there for Bradley, when the time comes.

I had a sweet friend call me and ask me some questions for an article she is writing
for a local paper about special needs children.
One of her questions set me back a bit.
She wanted to understand the evolution of becoming a Mother of a child with special needs.
And I've been thinking about that question all week.
I don't know exactly when it happened.
I do know Bradley has been different from the beginning.
It's almost like having my first child again.

And the evolution continues on.
And I hope I don't make too many mistakes along the way.
Similar to the way I feel about making mistakes with my oldest; Madeleine. 
And I COULD be paralyzed by fear, but I CHOOSE not to be.
It's just learning, right?
I'm not perfect.
I'm a work in progress.  

I know I have changed.
I was not thinking about any of the things I think about NOW; a year ago.
Perhaps some of my new knowledge has even jadded me a bit.
But all change has been for the good.
And glory has rested on Bradley, as I have realized who he really is.

Special is an okay word to discribe him.
But I want to find a better more perfect word to discribe him.
A word that means all of the following words combined:
 Soul stirrer

Let me know if you think of one.....

Thursday, May 24, 2012

Menke's Disease

Everybody is unique, fearfully and wonderfully made, here for a wonderful purpose.
Compare not yourself with anybody else lest you spoil God’s curriculum.
-Israel ben Eliezer

This week was polarizing for me, personally.
And there are lessons from this week I will never forget.

The doctors that we saw this week for his follow-ups from the hospital told us,
in two separate appointments,
how they were both thinking Bradley had Menke's Disease.
Menke's Disease is fatal.
Most children with it die just after their first birthday.

And the docs were almost excited when they talked about Bradley having this disease.

I'm feeling a little disturbed by their excitement.

And most of the days this week, I sat on the couch and stared into Bradley's eyes and
held him and thought about how I would live life without him.
And I started making a mental bucket list of all the things we would need to squeeze into
these next few months if they were to be his last.
And I'd watch Tom bathe him as he would hold him closer for a moment longer.
Smelling his skin deeper. Taking him in. Doing the same things I had done all day. Just holding him.

Life is too short.

And the disease they said they thought he had was basically ruled out this afternoon
as I drove down to the lab and picked up that piece of paper that I desperately NEEDED to see!
His copper levels are within normal range.

Won't it be a shame, if it ends, and we have things left un-done.
I've got to do as much as I can with them NOW!
I want to live like we are dying, because at any moment WE might.
And I do not fear after we die.
I know it will be a happy place to go to.
I know Bradley will finally be free from the body that holds him back.

But if my children never know how much I truly do love them,
will they want to be with me forever after this life?
I've got to make this life HAPPY for us NOW, so that later,
we will ALL WANT to be together FOREVER.

It was a lesson that was learned with so much pain this week.
A heart breaking lesson learned.

Wednesday, May 16, 2012


While we were staying in the hospital, the neurologist came into see us.
He stood at the foot of the hospital bed and we talked
 about other things that could be causing the seizures.
He told us he was testing Bradley's copper levels to see if he has a deficiency.
He said there is something about Bradley's hair that is making him think about copper levels.

 Near the end of our conversation I said "Who diagnoses CP?
Because Bradley's not holding up his head. He's not doing anything he should."

And the neurologist said "I do. And I will give you the diagnosis if it will get you help."

And I said "Yes, I think it could make our case more compelling."

And he said, "But I want you to know that we have LOTS of testing to do.
MRIs and EEGs to try and figure out what is causing these seizures. "

I told him I understood.
And I told him I was still pursuing a larger, unifying diagnosis.
And he said I needed to.

And when he walked out of the room, I realized Bradley had just been diagnosed with a huge thing.
And it made me a little sad for him.

And on Monday at Physical Therapy, the therapist said she felt like
Bradley had regressed a bit with his head control because of the hospitalization.
And I told her I noticed it too.

And after the session was over she was seeing us out to the door and I was sweating from fumbling between my giant purse, the ox tank and my 20lb child who is no where near sitting on my hip.
(yep, he's 20lbs now!)

And she said it was time to start thinking about a really nice stroller for Bradley.
And I told her we had been thinking about that too!
That we were going to go to Babies-R-Us to find a nice one this weekend!
And she said, "Well I'm not talking about a stroller you can buy in the community.
I'm talking about a stroller that is covered by insurance; that supports his head and trunk properly."
And she pointed to a stroller in the corner of the room that had a funny seat on it.
And she led me over to it.
And my eyes were darting all around it trying to
 figure out why she was talking to me about a stroller.
And I said "It has no belt!"

And she said it was their demo and that the man who sells them would come out
 and meet with us and measure Bradley for a perfect fit.
She showed me how the handle adjusted for any height to push it.
She pulled out the shade canopy.
She said you could detach the chair and put it at different heights
and set him on the floor with Charlotte
or set him higher so I could feed him with the tray.

And my mind suddenly caved and I started to cry.
And I apologized and asked her if everyone she showed these "strollers" to cried.
And she said, "Actually, they do!"
And she said that it was okay. That reality was setting in.
And she said, "This doesn't mean that he'll be in a chair forever!
It's just going to help make your life easier right now!"

And I walked out of there a little shaky and flustered.
And as I drove home I realized how sore my arms were and how much the "stroller" would help.

To me the diagnosis of CP still doesn't mean much.
And Bradley has had so many diagnosis, I'm starting to become numb to them.
Every time we leave a doctors office we get a paper with a little section titled "diagnosis"
and below that there is usually something I need to google, with a check mark next to it.
So many clinical diagnosis and yet so many normal test results.
And when you hold him in your arms, you feel his muscles,
yet you feel no help from him to hold himself.

And I'm starting to have a frustration in my voice when I talk about the unifying diagnosis.
I feel like such a broken record sometimes.

Bradley's earth stuff is some heavy stuff, isn't it?
Glad I know about the eternal stuff too.

Saturday, May 12, 2012

The Mother

I hold and comfort in the middle of the night, when the doctors are not there.
I've seen every seizure. Every blood draw.
Felt every pain with Bradley.
I know every aspect of Bradley's care.

A third year resident and I were talking one night during Bradley's stay.
She told me that some Mothers know more than the doctors.
And that it can be scary when they deal with Mothers.
I knew exactly what she was talking about.
I would be scared to cross, the mother of sick kid.

Bradley was in the hospital for a total of six days.
It's understandable.
He has seizures that are life threatening.

And I was in constant argument with the floor docs. 
Some have such egos!
They kept telling me they were in charge of my son's care.
I am the one in CHARGE of his care!

These are the major reasons Bradley was released on oxygen:
1. He has had strider since birth. (Google it)
2. He has chronic lung disease because of his history of aspiration and pneumonia.
3. He has small nasal passages and a constant congestion.
4. His pulse/ox has always been in the 80's.

And he can grow out of all of these things.
But the oxygen will not hurt in the mean time and hopefully
it will keep other damage from being done.
Low oxygen causes stress on the heart and all the other organs.

Bradley's crib is starting to look like a hospital bed, but at least it doesn't smell like one!
I can manage him at home.
I have to.
For my sanity and the sanity of my family; we have to have Bradley home!

Bradley has taught me how strong I am.
How strong women can be.
The Mother can do so much, when she is worthy of her calling.
Not only does she rock a baby. She rocks the future.
The God given right of Motherhood.
Given to Women.

Monday, May 7, 2012

The Teacher

Charlotte had a cold last week.
The kind of cold where she woke up crying in the night coughing and complaining.
And the morning that Bradley woke up with green snot, I was not surprised.
We pass germs around.
We are a family of six. Four under the age of 8.

And on Thursday and Friday night Bradley didn't sleep well.
And I was up most of both nights with him.
And on Saturday morning, Tom came in and said Bradley looked grey and splotchy.
And I told Tom I knew he was sick and because he was not sleeping I was worried.
And Tom said he thought I should go to the hospital.
(the fact that Tom suggested it, should have been sign enough)
But I told him I'd get in the shower and think about it.
And I said a little prayer in the bathroom, that if I needed to take Bradley in,
I would have a little sign as a reason to take him in.
And Tom came back into the house (he and the kids were going to a baptism)
And he told me he couldn't leave without giving Bradley a blessing.
And that was my sign.
And he gave him a blessing, AND I KNEW it was time to take him in.

And as we drove, Bradley was so quite.
And I thought "maybe he just needs some sleep...."
And when I got to Sunrise, I was unloading Bradley and when I snapped his seat into the stroller,
he turned a funny color and I started running across the parking lot to the ER.
His arms went high above his head, and I started blowing in his face and yelling "NO BRADLEY!"
I got into the ER and told the nurse he was having a seizure.
She looked at him and told us to come right back.
They took us past triage, directly into a room.
They cut off his shirt.
They used a resuscitation mask to get him some air.
He quickly came to and they started to quiz me down.
I told them he was on phenobarb to control seizures.
And they pulled his history up in the computer.

And they wanted to know how I knew to come in.
And I told him my husband had thought his color was off.
And they swabbed his nose and he was RSV positive.
And they admitted us to the peds floor.

A few hours later Tom came to sit with us.
We had lunch. And talked.
And they said I could feed Bradley and I decided to
feed him through the tube because he was kinda out of it.
And as I was trying to get the milk down, he started doing it again.
And this time he was on a monitor and all of his vitals flat lined.
And I pushed the nurses call button.
And Tom went out into the hall and yelled "HE'S NOT BREATHING- HE'S NOT BREATHING!"
And an announcement came on in the whole hospital and a calm voice said:
"Code Blue in the Pediatric Unit. Code Blue in the Pediatric Unit."
And suddenly the room filled with 40 people.
And I was frozen in the corner.
And there were 15 men and women around his tiny body with their hands all on Bradley.
And everyone let the RT through the crowd to resuscitate him.
And Bradley coughed and took a breath.
And the rest of us finally did too.
And the doctor from the pediatric intensive care unit introduced himself
with sweat on his forehead and on his palms.
And he said that our son could NOT do that on the peds floor
and that we were being moved to the PICU.
And Bradley was gone before we could even say "okay".

A social worker came to take us upstairs in the staff elevator.
And she looked into my eyes to see if I was okay.
 And I told her this was not his first time scaring me.

All the memories from his near death were in the halls of the PICU.
And they put us in the room, next to the room, where he almost died last August.

And one by one all of the nurses told me they recognized us.
NOT Bradley, because he is so big, but Tom and I and Bradley's name and story.
I guess that's my fault for naming him Bradley Brinkerhoff :)

And this morning the surgeon who saved his life last August came into
Bradley's room and said he had "heard we were here".
I told him how Bradley wasn't holding up his head
and that Morris doesn't know what syndrome he has
and that our next diagnosis will probably be CP.
And he looked blankly at Bradley and I told him we use the G-tube all the time.
And the surgeon smiled.

They moved Bradley back down to the peds floor this afternoon,
because his seizures seem to be under control.
And I left him there so that I could have a break.
Tom came home from work and he and I lay in the bed reconnecting after 3 long days.
And I started crying and telling Tom that
I'm scared that his little brain is not keeping up with his growth. 
 Morris said his brain has atrophy and enlarged ventricles.
And I'm so scared of what that means for the future.
And that it is not fair that he has such a broken body,
while all the rest of us walk and talk so easily.
And that if it's an unknown condition, how it could be fatal.

And Tom said that it's amazing how many people know and remember
 our tiny Bradley for the few months he's been on the earth.
Tom said that he thinks Bradley is and was a great teacher.
That Bradley was a great teacher before he came to the earth.
And that someday, we will see who he really is,
 and we will all be amazed that he was sent to us.