CrossRoads

I don't know if any of you ever pay attention but there is music on this blog. I like music. I am one of those people who actually pay attention to the lyrics. The songs on this blog reflect different moments in my life with Ivey. Some I sing to her, some are on my IPOD under Ivey's songs, some make me think of her and others comfort me. I have always been like that -

So I have found myself at the cross roads with Ivey's blog. I am not sure what to do actually. This is a journal of time passed and time to come. I have been struggling with going on with it for some time now. It has actually been well over a year, almost two, where I have struggled with the things I draft here. Wanting to record every detail of Ivey's life, yet trying to decide how to edit it for reader's eyes is killing me. And it has felt in the past two weeks that it is time to make the decision.

Thus the battle of purpose battles itself out.

To set the record straight, I did not originally choose this medium for my thoughts. This whole thing started with friends trying to wrangle the chaos of information following Ivey's birth, but I've told you all that before. No new news there. And somehow in the days that followed it became Ivey's blog…the minimal recordings of her life. Or so I thought. That was my intent.

My intent. Well, it is not something I had with this blog. The ease of typing, keeping things organized and most importantly for me – meeting other people, especially the parents out there in this big world with children not like Ivey, but so much like her – drew me in. The omnibus world became small and I was not alone in it anymore.

Alone. That word alone is so vague. To be surrounded constantly by friends who would give up most any obligation at the drop of a hat for us, but even they don't really understand – no matter how big their heart is or how hard they try. There are days I find myself not being able to breathe in Wal-Mart. Those days become doable because I know out there some other mom is roaming the isles too with a deformed child - in a wheelchair - making odd sounds - being stared at – and they are pushing on. It gives me strength, literally to this day.

Purpose. This blog is about Ivey, it always has been. But without a doubt it has always been from my perception of my life with her. I have learned enough from the short years that have passed that her perception is probably nothing like that of my own. I could keep a paper journal, but this was the official beginning to documenting Ivey's life – and I haven't been able to take myself from it – it would be like leaving part of Ivey behind.

I want to remember where we have been to appreciate where we are. The connection between Ivey and I delves beyond the normal mother-daughter bond. But only another mother and especially one of a special needs child – multiply disable child at that – can truly appreciate what I mean. Ivey cannot survive without me. My life is her life – her life is my life – literally until the day one of us dies.
Is it a gift? After two years of trying to decide if it is okay for me to discuss Ivey and her life, I finally decided during the last hospital stay that it is entirely my gift to others to talk about Ivey. Unfortunately, in the wake of Ivey's awesomeness I find that I talk about myself. Whether I can proceed with this blog or not, one thing is finally clear in my mind- Whatever happens with Ivey is not an isolated event – it takes me with it.

Her miracle. There are times I feel qualified to be her spokesperson. In a way the task became mine the day she was conceived. By some miracle, the first of many, a baby that was never complete managed to survive nine months. Somehow my body was enough. In the time since then she has climbed mountain after mountain dumbfounding us all. Still I often wonder who I am to speak so openly about her life. Would she really approve of this blog?

All and all there is one other piece of my heart that this blog holds. It is the unspoken piece of our life with Ivey, one that we were warned of in the first days of Ivey's life. A piece that steps into the dark corners and leaves us to wonder about the quantity of time she has on this Earth. That fear never leaves me. Ivey has already lived years past the initial predictions. Have you ever been told that your newborn child might not live to make it home? And now look at her, – so full of exuberant life. I believe in miracles. But I also believe in reality. I know, just as Matt knows, that our lives may see more days than our daughter's. That is why when you come through my side door – the door that friends and family enter – there is a quote from Abraham Lincoln hanging. "Live a good life – And in the end, it's not the years in a life, but the life in the years."  It is our reminder. There will be a day that I come here to this blog to read my memories and hold Ivey only in my heart and mind.

Here we are again back at the cross roads. I wonder often whose story I am really telling. Is it her amazing story? Is it her story tainted by my struggles to thrive in her world? Or is it my story overshadowing her? Are our lives are so intertwined that they can no longer be told separately?

I feel that Ivey still has an amazing story to tell. Starting Friday we will begin a new chapter in her life. One that may not be quite as hard as other times in her life, but one that will alter the continuity of the schedule we have created, which in our world continuity is security. I am uncertain of what to do at this point. I don't want to edit anymore. I want people who come here to accept that things are not always blue skies, gum drops and rainbows. For us it is sometimes black skies...then the moment where that first ray of sunshine peeks through the clouds makes all the difference - that's what makes Ivey's story so amazing. I am hanging onto balances..one moment continuing on …..the other closing shop.

The pendulum is begining to swing and I think it is time to decide.
In the meantime, I leave you with our music. Maybe listen to some lyrics and find our comfort in them.

Blue Light Special

Riding in the car is often, what should I say, interesting with Miss Ivey. Over the course of three years and 11 months I have self- trained myself to drive in emergent situations. That's a scary thought, huh? Self-traind ..

For the first year of Ivey's trach, I did not drive in the car alone with Ivey. Someone (an adult) was always our passenger or they were our chauffer. It always struck me as remarkable that our friends, some close others acquaintances, would pool themselves to ride along with us. Ivey and I developed some strong bonds in those rides. However, the pressure of having such a simple privilege ripped from under my feet got the best of me.

First, I began to drive alone with Ivey to pick the boys up from school. Gradually we expanded our circumference. Eventually we found ourselves driving to Chattanooga one day to watch a movie on the IMAX with friends – I have never been so scared in a car traveling that distance with Ivey trached. From that point on there was no looking back. That was the day I decided life had to resume some normalcy even if it meant we got to know every parking lot in Georgia.

Since the trach has been gone – seizures rule our car rides…

In all this time I have spent many days pulled over on roads, highways and in parking lots. I have had more people blow the horn at me because I was the first car in line at the red lights – where we sat through multiple lights as Ivey needed suctioning with her trach, monitored during seizures or some other catastrophe. One, don't go thinking "how dare they", how many times have you about rammed someone through the light because they didn't go from 0 to 60 once that light flashed green? Two, start obeying the rule of not tail gaiting and pulling to close to the car in front of you – or you could have easily gotten around me. I speak for all of us - I know I do the same things, I pull so close to cars while waiting on lights to change….that I can always read the bumper stickers that say "If you can read this, @#%#$!

Anyway, no one has ever pulled over to the side of 411, 75 or 285 to see if I needed help -

I have even had people slow, intentionally, as I ran up behind them going down Turner McCall literally at 60 miles per hour aiming for the ER –not move into the right lane - really– flashers on – flipping my headlights all the while Ivey was seizing and turning blue - It is really amazing what people will do to sometimes. (This has happened more than once.)

Today Mr. Policeman I will say an extra prayer for you. Thank you for turning around and waiting with me as Ivey seized. You are the first in three years and 11 months to stop. And even though I spent the entire time telling you she is fine – you stood there and waited. And I don't think that all of our times in the past were over looked – just the timing wasn't there. Today you were in the right place at the right time. So thank you, Ivey thanks you.

And since you offered so much kindness and I am now indebted to you, I will close up this computer, get out my saw and try to remove this lead foot that is welded to my leg -

 

 

Woolite vs Soap Scum

So this morning as I was spraying the shower for cleaning, I kept think, "Wow this cleaner has a really strong ammonia smell."

It was the woolite carpet cleaner.

I'll let you know how Woolite does on the soap scum...

So begins Monday -

Miss Ava and The Sirmans'

This is the newest addition to our family. Now before you go jumping to conclusions - stop and read....

This is Miss Ava. She is Knox, Walker and Ivey's Godsister. And unbeknownst to them she isn't a blood relative, but something a little more.

Iceberg

There has been alot going on around here in the past few months.  Actually alot of medical stuff.  It hasn't been like this in a while.  I'll be honest.  I am tired - mentally much more than physically.  In the past when more medical 'stuff' mounted we were already in up to our nose, so a little more was no big deal.Now we have been in a place with a slower place and just shifted from our momentary deep breath - back toward medical mania.  New stuff.  Always something new it seems, which should not be a suprise.  We have always known there would be new stuff - do you like that I keep calling it 'stuff'?

Just when I thought I had this whole Ivey thing figured out she threw out a new plan straight from right field.  It's time to head up to the attic, dig around in a dusty box of college textbooks and reread what little there is about the tip of this iceberg we are about to encounter.  Google get ready.

Recently someone unknowingly said something very hurtful to me about my relationship with Ivey.  And for a brief moment in time I actually let those words in.  I doubted my role in Ivey's life.  I wondered if they were true.  But in the past weeks since the wheels have started grinding again, the fear that never subsides from having a daughter like Ivey has began to well up again.  A fear that I would never wish on anyone.  It reminds me of the roads that are less traveled that we have walked - sometimes crawled on- most times alone- making our own path through weeds and briars - sometimes coming out scraped and battered, but we come out alive.  And that is the key word that brought me back to center. 

Today as I sat in a new physicians office I was pulled back to reality.  OUR reality.  He was in mid-sentence - referring Ivey to anther physician - when he stopped talking and just looked at me with a grin.  Apparently I had the 'giggle so I don't cry' grin on my face because he said 'Your doing a great job with her.  You are doing an excellent job.'

I'll admit it.  I needed to hear that.  Because he is right. I, like all other parents with medically fragile special needs children, am critiqued on a daily basis.  No other parents are viewed under the magnifying glass like we are.  Our children's progress, or lack there of, is our check mark for success - their success.  I think other adults involved sometimes forget, especially with kids like Ivey, that our kids have more in their resumes than whomever is working with them at the moment, whether it be medical or educational arenas.  Most of those same people who have the best of intentions with our children, would never want the life that they expect us to create for our children - working all the time - sometimes our family emploding - never having enough hours in the day.  They would never want to be judged in the same manner.  Ivey has 15 doctors, therapists (OT, PT, O/M, VI, HI, SLP), teachers, home health nurses, countless appointments and life inbetween.  Top it off that she is 1 out of 7 known kids with her genetic abnormality.  She is a not so common deafblind kid.

He was right.  My daughter is here, she is alive and honestly did you know that she wasn't supposed to be? Despite my faultering with confidence at times, Ivey is thriving.  Amidst the medical complications that her life entails, she has managed to be a very happy smart little girl.  She may not be typical, nor does she follow some curve on a chart, or conform to be like some paragraph in a textbook on special needs  - She is much more than that. 

She is my daughter.  And she is amazing. No matter what, that is enough for me.

I have an appointment to confirm tomorrow then we'll talk.  All and all this next move should prove to be very good for Ivey.  It's just me kicking and pounding my fist for a moment.  I sit beside Ivey and make decisions for her everyday on every aspect of Ivey's life.  Every aspect.  Those decisions are not easy. I just hope this blog can help those who are in the lives of children with medical and educational special needs see that all of these decisions are woven together.  Unlike those who work with Ivey individually on focal areas of need, I only see her as a whole.

And all and all over the years decisions have been made that were/are the prominant decision to be made at the moment.  When she sat in a hospital for weeks after being trached unfortunately proper techniques for teaching her were not our focus and after the trach we didn't linger on it...my girl had things to learn.  My point.  Ivey has both mental, motor and physical delays that are naturally built into her body.  She spends time battling seizures and illnesses. She undergoes more than her share of procedures. She has at time- missed- valuable time. 

So if you read this in blogland go back to the medically driven special needs child in your life - and take a long look at the tenacity of that child.  Praise the accomplishments they have made.  Even though you can read background about the child, those words in black and white do not entail the true history or what they have endured and SURVIVED when you were not part of their life.  You can't imagine the choices that have been made for that child, nor would their parent want you to.   Don't piece mill the child.  Take them whole and service them as a whole.  And know that child is standing before you because they had parents who were with them every step - making decisions - loving them - cheering them on -

Whether it be this blog, a therapy session, a few hours in school, a doctor's appointment or weeks in the hospital, those moments are only TIPS OF THE ICEBERG.  What lies beneath the surface...well you know what I mean.

I'm confused

What do you do when something is wrong and there are so many doctors you don't know who to call? 

And this is not a riddle, or at least I don't think so......

Ms. Lori

Update:  If you would like to know more about Ivey's League click on the highlighted "Ivey's League" in the post - or about preschool - just click on them.  Amazing people are all around US!!

This year has been a great year in preschool. Ivey actually goes to two preschools,which most of you probably already know. She goes to a county school and is in a special education classroom two days a week. Then two other days she still attends the same preschool that the boys went to, just regular kids. Both schools are perfect fits for Ivey and in many more ways, Ivey is a perfect fit for them. In the 'regular' pre-k class, she gets interaction with others her age. She can hear what typical three and four year olds do, the sounds they make, the games they play.... There she is just Ivey -

I don't stay at pre-k with Ivey this year. I rely on Ivey's League, her teachers and on occassion other parents to tell me about the wonderful things going on in the classroom. But, the kids always tell the true story.

This is Mrs. Lori. She is incredible and part of Ivey's League. Ivey looooves her. I think Ivey is so drawn to Lori because she picks Ivey up, gets loud and has never been intimidated by any of her 'stuff'. (Except maybe the eyes.) Lori took all of these pictures, which sums up just how happy Ivey is when Lori is around.

Thank you Lori, don't know what I would do without you. All of Ivey's League has provided so many opportunities for Ivey and in return that opens doors for all special needs - beyond Ivey. In one word - we are all advocates. You all are teaching not only Ivey, but these 'regular' kids lessons that school might not teach otherwise.

Lucky Number 7

Today's the day.  My sweet favorite oldest son is seven.  All I can keep thinking is ... where did the time go? 

Happy Birthday to the bestest seven year old I know...well almost seven, you still have a few more hours before it is official and I am milking them for all they are worth. 

I'll post a picture as soon as I get back to my computer.

Uh-Oh

Last night, or rather at a very early 4:00 am, Ivey spiked a very high fever.  We spent the better part of our morning visiting Ivey's pediatrician.  When it comes to physicians, Ivey has the best.  Right now we are trying to determine if this is all related to test results that are pending from Ivey's previous hospital stay at Scottish Rite.  For now we have put her back on a pretty tough antibiotic until we find out more from the infectious disease doctor at Scottish Rite.  Cross your fingers -

On the upside, through this miserably high fever, Ivey has not seized.  Amazing! 

So if you were Ivey, this is where you would find yourself all snuggled up.  She rides around the house from room to room in her jogging stroller - so I can monitor her for seizures.  The pink polka-dot blanket is her favorite snuggly. 

Later on in the day, Ivey perked up a little and we put her hair up into her very first piggy tails! 

Sometimes she likes for me to play with her hair. 

Normally not so much, she would rather twist mine through her fingers.   

I know I am biased, but she is adorable.

Seedlings Braille Books

The Spring Seedling Braille Books Catalog arrived this week.

If you are not familiar with Seedlings, they have books of all kinds from children to adults. It is a non-profit organization. The donations received help produce brailled books. Their goal is to promote literacy for blind/visually impaired children with high quality brailled books at low costs. They are just like the books you buy in Barnes and Noble with the added exception that the brailled story is on each page too. If you are ever looking for a unique gift for someone, especially kids, these are great books to give as gifts.

Ivey has several if you ever want to 'read' them.
You can go to http://www.seedlings.org/.
 
They could make great Easter basket gifts. You could introduce your family to braille with a book about the ABC's! At some point, we will all want to to sit with Ivey and read a book WITH her - and for her, that book will be brailled. Way down the road right now, but we all have to get a head start. Because of Ivey we are all becoming a little more worldly and SMART, even if we weren't expecting to -