Tuesday, May 31, 2011

{Time Past Tuesday}: 6/6/99 The Sign

Madi 1999
Before sharing this post I already had ready to go, a quick update and request for prayers for Miss Madison is needed.

When I checked on Madison very early this morning, I was so excited to see she still had her BIPAP mask on.  After a year of fighting her with it in the middle of the night, when she was so asleep she had no idea she was consistently taking it off, and was not very cooperative about putting it back on, we made some recent setting changes & she is actually making it completely through the night some nights without removing it. This is huge and very needed now that we have oxygen attached to it, for a whole host of reasons.

However, when I awoke at 5:30 this morning to Abby yelling that Madison was throwing up, my initial sleepy thought was how I hoped she had taken it off after I checked on her last.  She had not though, and this made an already scary situation of waking up sick, down right dangerous.  I will spare you all the details, but it was a mess and there was a real concern that she might have aspirated during it.

Thankfully we got the ER at about the most ideal time.....7:30am.....right after shift change and apparently not a time a lot of people hit the ER.  I have NEVER seen it so quiet there!!  We got fluids, labs done, and a chest xray and thankfully all looked good.  On the good side, it doesn't look like another infection.....on the down side, it looks like her GI tract is just not moving as it should.  Her bladder seems to be sluggish right now too.  We are HOME though, regularly dosing with Phenergen, and getting fluids in via her g-tube, and praying we can stay here.

Now....back to the regularly scheduled post!!

Way back before we had CaringBridge, my ramblings took the form of emails, mostly to a Hypotonia List I belonged too (and still do).  Back then, hypotonia was playing a significant role, mostly because we didn't have a lot else to work with.  I saved many, if not all, of those emails, and recently was reading back through some of them when the thought occurred to me that some were worth posting here now.  I considered editing the posts, and may still decide to go that route, but see some value in leaving them as they are for authenticity.....in some ways maybe they will have more impact if left alone, however, I will reserve the right to edit as needed.

So, a beginning to {Time Past Tuesdays}


Hi all :-)

Boy have I been learning about taking things one day at a time and most importantly APPRECIATING each day for what it has to offer lately. There have been times in my life where I was at the end of my rope and I have maybe been angry because of the lot I was dealt, or overwhelmed with sadness because someone I loved was in pain or struggling and I couldn't do anything (or atleast I thought) to make it all better. During these times I have been known to be very questioning of the BIG guy in the sky and why he thought I needed all this crap!!!!  LMAO  You know, one of those conversations that go something like, "OKAY, I have had enough, I learned the lessons, I have found all the good stuff thats come out of this difficult situation, I have tried to learn from it, I am a stronger person for it....BUT GEEZ, how much stronger could I possibly be right now and WHY have YOU abandoned me."  There have only been three times in my life where I was this far down the road and really questioning of what was happening in my life and the first two times there were events that in my mind, could only be described as miracles and a true sign that there was someone out there that cared and I really hadn't been abandoned.  Each time, being that I am a christian but not a highly religious person, I have been shocked and amazed and truly touched by these "signs" that seemed to be so impossible and have come out of no where.

Chance had his OT eval on Friday and there are no two ways about it, it was a bummer.  Some major issues going on there and more than I had anticipated and it was hard to hear that in addition to the auditory processing disorder, language problems, Asperger's Syndrome and Lord only knows what else, he has some additional serious issues going on.  I will share with you guys exactly what we are dealing with when I get the written report next Friday, but she tried to explain the things over the phone and in person with me.  I left the OT rather low in spirits but it quickly turned around because I was picking up my best friend from online at the airport coming in from Boston as soon as we left the OT!!!!!  We had a glorious weekend and it was amazing to be able to sit down and talk with someone about the issues that UNDERSTOOD!!!!  Her youngest has hypotonia also and at 2 yrs and 2 months has NO speech at all, major sensory issues, and is across the board right now at a 12 months level.  Anyway, she could actually RELATE to me!!!!  And it was such a joy to sit and talk about the issues AND every other thing that could have possibly came up.  I took her to the airport this morning to get her on a plane home to her babies and was hanging out watching her plane leave when the "sign" happened.

As I stood there at the window watching the plane begin to taxi down the run way, a gentleman was also standing there watching it leave.  He asks me if I have friends on the plane and I explained who she was and how we met, which he thought was very cool.  Somehow we start talking about my email lists and I am not sure what I might have said, or how he might have had a feeling, but he asked me if any of them were because of issues with my children(!!!!).  Was VERY wild and when I said yes he asked me if I didn't mind telling him what the issues were.  So, I tell him a bit about Chance, but before I can tell him about Madison he tells me that he has CEREBRAL PALSY!!!!!

What I had not noticed in standing there talking to him was how oddly he held his right arm and leg!!!!  So when I tell him about Madison's issues we were both a bit freaked out!!!  He told me not to believe
everything the doc's said and of course I laughed and told him I had that one covered....LOL.  And we just chatted and he talked about his parents and how incredible they were and how well he was doing, etc etc etc.

So, I am thinking on my way home, still basking in the ***afterglow*** of my friend being here and the thought entered my mind, kind of out of no where, that this guy was a "sign" for me.  He was "sent" to me to remind me that I really AM making a difference in my kids lives, that what I am doing now really will help to make things okay, that the hardships the kids are facing now really WILL make them better people, stronger people, more loving people.  That, (and he actually asked me point blank if I felt guilty about their issues), I am doing all I can and that there is nothing I could have done better or differently that would change where we are now....and in fact, because of everything I have given the kids of myself all along, they are in much better places than they would have been without me.  Of course, I told him that sometimes the guilt feelings seep in, and he told me, literally with tears in his eyes, how his mom had told him when he was 26 how sorry she was and he realized how guilty she felt about his problems.  And then how he had let her know that he was BLESSED to have had her and his dad and that they were the reason he has been successful in life and he credited them with it all. 

Makes me cry again just writing about it.....I NEEDED to hear this, and to hear it from someone thats BEEN THERE...well, what more could I ask for!!!!!!!!!!  Now friends, consider this whole thing
meant for you too!!!!!  His message was one for all of you as much as it was for me.

I am sure one could find that there may have been some logical reason that this happened in exactly this way, but to me it was nothing short of a miracle and came to me at a time when I was feeling lost and
abandoned yet again.  What a way to renew my strength!!!!  I sure hope all of you can get something from it too......all of us here are amazing and our children are as blessed to have us as we are to have them!!!!! And someday, I pray, it will be my Chance or Madison standing somewhere talking to a complete stranger able to say to them that they credit their success and ability to overcome some hardships because their mom and dad were there for them and in their eyes, did everything right. Wouldn't that be cool.

Kass, mom to Madison(30 mos) and a couple other incredible kiddo's  :-)

A couple of notes to "wrap up the story"....

  • My "friend from Boston" is still one of my dearest friends, Lisa.  Her little one with hypotonia went on to be diagnosed with Fragile X just a little bit before we got our Mito dx, and he is now a young man navigating this world we live in.
  • Clearly this was in the time before 9/11 when we were able to go all the way to the gate to see our friends off on their plane.
  • I actually go back and read this story every now and again, needing that reassurance it gave me then.  I marvel at how, only a year or so into this journey at that time, similar the feelings can still be now, 12 years down the road.  It reminds me of how quickly and forcefully we are yanked into the world of special needs and all the feelings that come with that....and that, while things change, so much remains the same. This is not all bad, as long as you have that touch stone to remind you that the feelings are normal, and part of the process.
  • Finally, some small details that I failed to share at the time, but with time and reflection became important to me.  The gentleman was clearly successful and while I cannot remember exactly what he was doing, I do remember that he owned several businesses and was clearly happy with his life.  At some time after the fact, another tidbit occurred to me....we walked out of the airport together that day, the gentleman and I.  We parted ways at the door, with me going across the drive to the parking garage, while he went off to the right along the sidewalk, and yet, when I glanced over just as I was entering the garage I realized he had disappeared!!  There was no logical reason that I should not have seen him walking along the sidewalk, and yet, he was no where to be seen. He had vanished just as quickly as he had appeared in my life that day.

Monday, May 30, 2011

{Medical Monday}: Sharing Our Perspective

Several weeks ago I received an email from the coordinator for the Family Advisory Council I serve on, asking for parents to volunteer to come in and speak to a nurse’s association about our experiences as parents of children with health issues.  I was not quite sure what to expect, but have been looking for a way to do more since joining the council, and this sounded like it might be a good option.  Oh, and I actually had the ability to be there when they needed me…..always a crucial part of the equation!!

I was one of the first Mom’s to arrive and got a chance to talk with the facilitator for the meeting that night.  She explained that there were 4 other mom’s coming and we’d sit at the front, share from some questions that had already been provided to us, then open the floor to questions.  All in all, seemed simple enough, but hard to tell exactly where this would go.

The other mom’s and I got a few minutes to visit before we went in, and in that time learned as much as we could about the things we were all facing.  I thought, as we walked in, that we were an excellent mix of parents for something like this….but really had no idea just how ideal it really was.

V is married and has two children. Her youngest, a son, has had medical issues since he was very young. Her older child though, a daughter, was diagnosed with a brain tumor a little more than a year ago…..an essentially untreatable brain tumor…and has just recently gone on hospice, having outlived what the doctors expected.

K #1 is single and has a daughter with Neuroblastoma who is continuing the good fight.

K #2 is married and had a child with Neuroblastoma that succumbed to this brutal cancer.

K #3 is married and a has a child with intractable epilepsy that at age 4 has already had 2 brain surgeries and is scheduled for another this summer.

And then there was I.

The mom’s and I spoke for a little more than an hour.  We initially covered our reason for being there…our kids.  Then covered the moments when a nurse had made a positive difference for us…..those times when it did not go well…..and finally, what we would want a new nurse to know before they got started.

It was an INCREDIBLE hour.  And that thought I had at the beginning, about how nice the range of circumstances were for something like this, proved to be profound.  We were an amazing panel together!!!  It was an HONOR to be sitting there with these amazing mom’s.

More incredible was that we got through….we touched these nurses and shared some of those vital things we all wish we could say to them.  And they heard us….really heard us.

At the end of the meeting, the facilitator said something that meant the world to me….she shared that she would be a different nurse the next day because of what we had shared.

In follow up, one of the attendees shared the following……

Yes, thank you very much. The panel was so impressive – there stories sent chills down my arms and brought tears to my eyes. I only wish more folks could have heard. I’ve already shared some of their thoughts with 2 of my nurses and plan on sharing with more. One mom said, “You totally make my day by your initial interaction with me and my child.” Another said even if you’re busy, “Make parents feel as if they have your undivided attention when you’re in the room with us.” Another said that look at their child and realize that is their (mother’s) whole heart there.
Please let each on the panel know that as a manager often responsible for coaching my staff that they were helpful not only for me personally but also will be for the staff I encourage.”

I cannot begin to express how amazing it felt to get this opportunity…and to know we might just have made a difference for someone else.

Friday, May 27, 2011

{50 in 50 Friday}: Item #18

Photo MadisonMcNair 2011

18.  Find ways to help Madison make something of her photography. Lessons maybe? Or just a mentor?

I had not anticipated the full extent of the blessings that would come of making this list of items we wanted to accomplish this year.  I knew it was a needed exercise…..something that would hopefully pull us back into focusing on the things that make us happy, the things that keep us sane, but I could not have known it would also open the door for us to meet new people and make new friendships!!

Micki & Madi
Madison’s photography mentorship is going exceedingly well, in no small part because we absolutely adore her mentor, Micki!!!  Micki is everything one could hope for as a mentor….she’s kind, funny, inspiring, and most importantly, capable of thinking outside the box to make this mentorship happen.  To mentor Madison is easy….she’s willing to work, loves what she is learning, and is about as enthusiastic as one can be.  But to mentor Madison is hard too….she has been sick an awful lot since we started this endeavor and Micki has been patient and understanding when our best laid plans fall apart…regularly.

Micki’s photography blog ( www.mbenoitphotography.com/blog/ ) is a testament to her talents. And I am thoroughly enjoying her newest blog, the one where she is just talking, and in turn I am getting to know her even better at www.gravyandcherries.com.  I encourage you to get to know this lady better too….she is definitely something special!!

None of this would be happening had it not been for our friend, Brandy.  Brandy is our ever present supporter/cheerleader/problem solver and we sure do love her!!!  She was the one that took this item on a list and found a way to make it happen.  Another one of our many blessings is this amazing lady and her friendship!!!

Finally, seeing Madison’s photographs….seeing her love doing what she is doing and learning how to make it even better….well, that’s the blessing of all blessings.  Enjoy!!

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Photo Madison McNair 2011

Thursday, May 26, 2011

{Things I Love Thursday}: The Mavs

Granted, when they are winning, it’s easy to love them!!!  But the truth is, we love them all the time, even when they are not.  Give me a little J.J. Barea and I am a happy girl!!!

Part of why we love them is that we have an almost “personal” relationship with them.  A couple of years ago, we had the honor of going “back stage” if you will, right after Coach Carlisle came into the picture.  The thing is, we loved Coach Johnson and were none too happy when they made the change, so we went into this wondering how we would feel about the new coach afterwards.

After an afternoon spent in the locker room, then having a clinic with the new coach, he earned himself some fans!!!

Coach Carlisle working with Chance on his shooting!!

That winter we had the privilege of being a part of a Christmas party hosted by Make A Wish and the Mav’s and there we had the chance to meet all the players and hang out with them for a bit!!!

Note Chance’s height next to JJ!!

At this point, if we were not hooked already, we couldn’t help but be!!!

A couple of years later, McNair randomly found a camera on the side of the road.  Somehow….because he’s such the sleuth…..he figured out who the camera belonged to, and it just so happened to be Mrs. Ussery, the wife of the CEO of the Mavericks!!  I know, crazy!!  They were nice enough to give us tickets to a game that we thoroughly enjoyed.

So yeah, you might say we have a personal relationship with them J

Wednesday, May 25, 2011

{Word-Little Wednesday}: Girls on Sub

Abby & Madison, Submarine Ride off the coast of Oahu, 2002

Oh how I wish I could remember what was happening here!!  Well, other than Madison apparently ready to barf and Abby contemplating jumping overboard!! Makes me smile every time I see it and had to share!!

Tuesday, May 24, 2011

OCD, Minus the C & D (mostly)

Obsessive is defined as, “Excessive in degree or nature.”

This defines both my husband AND my son.  Not ALL the time, but the vast majority of it.  And I have a love-hate relationship with this aspect of who they are.

For years my son obsessed over bugs and animals. 

He loved them, protected them, learned all he could about them.  We went no where that he was not on the look out for one or another, and he could spot them like nothing I have ever seen. 

I vividly remember when he was being evaluated for autism, telling the therapists that if they had anything bug related in their room they should remove it or risk losing his attention all together.  One of those therapists happened to have a lady bug collection, and she removed every single one before my boy stepped in the room where the evaluation would take place.  In both instances, before he left those rooms, he managed to find a LIVE bug to fawn over…..and as soon as it was spotted, there was no chance any further evaluation would take place.

At the time, it lended itself to the autism diagnosis, but what I knew was that he is his fathers son in this respect.

Turtle Park, Hawaii 2002

Then my little boys obsession was Pokemon….then Yu-Gi-Oh!

Halloween in Hawaii 2002
.....both for far longer than the average child was interested.  Innocent enough, but not exactly something that would take him into adulthood and give him a profession.  Although, it was during Yu-Gi-Oh! that I discovered his photographic memory, and ways that I could aid his ability to retain and more easily access information, so not completely without worth.  And, it was a way that he could relate with other kids at a time when that was so very difficult for him.

Several years ago he discovered mythology and fell in love again.  He poured over information about all kinds of mythologies (interestingly not much Greek, but lots of Norse), read college level books that I, in all honesty, don’t understand at all, and given the chance to talk with someone equally obsessed and in love with mythology, he could completely hold his own.  I would stand and watch these interactions, completely lost on what they were talking about, but loving seeing him show his knowledge AND interacting….really interacting!!  Now this, while not exactly a common course of study, was something he could potentially do something with.  He came to the conclusion that he wanted to get his degree, then a master’s in Mythology and teach it at the university level.  Never being one to doubt his ability to do anything he sets his mind to (we always said he would be a scientist when he was little, and he would tell you he would be a "scientist of everything”), I was thrilled with this turn of events.  His researching ability, reading ability, retention, understanding, and so much more improved tremendously during this time.  I think it even had an impact spiritually in interesting ways.

Late last year there was a shift, and his latest obsession is music

….playing it, listening to it, and knowing a lot about it.  A LOT.  He’d love to have a band, and have it be successful. 

He’s also fascinated with all kinds of different instruments, especially those no one I know has ever heard of before.  Much like the mythology, he can tell you things you never realized you needed to know!!!  Where this particular obsession is going, is anyone’s guess, but you never can have too much music in your life right!!??

This, for the most part, my precious son comes by naturally.  His Daddy is just a wee bit obsessive too.

After 25 years together, I have been privy to more than I could possibly share here.  It’s been an adventure!!!

The latest and greatest is Bike Camping, and he embarked on a trip a few weekends ago. 

I cannot possibly describe the amount of time and thought that is put into every item that was loaded on his bike, or the time he has spent retrofitting his bike to be the way he wants it to be.  Hours and hours, experiment after experiment, that thankfully does eventually culminate in him going on the excursion. 

There are lists to be made……

And certain items we are SO glad he remembered to add on!! LOL

A daughter rooting her old Dad on…..

And not realizing just how much like her Dad she really is, down to “the foot tilt”.

It won’t stop there…..there are always improvements to be made…..but I do enjoy seeing something come together finally.

When all is said and done, as crazy making as these obsessions can be for me, particularly when both boys are in that mode, I cannot help but be fascinated by how their brains work….and sometimes, yeah sometimes, even a little envious of that kind of passion and single mindedness.

Monday, May 23, 2011

The Good Stuff!! Houston on the lighter side

Madi & Zoey

While I am still playing catch up, THIS post is the one I most wanted to write and share!! 

Our trips to Houston are truly a very mixed bag. 

There is the prep beforehand, packing, and getting four of us ready to go.  There is the multitude of appointments, the far too frequent things that are hard to hear, and the pokes & testing.

But at the same time, there is the chance to see people we love, the comfort and thrill of having an amazing support system there too, and the opportunities to make happy memories spending time with family, old friends and new ones each and every time.

Celeste & Madi

Harley & Abby
In the end, the HAPPY stuff somehow always outweighs the yucky stuff.  How awesome and amazing is that!!??

Face painting FUN!! Abby as Ke$ha

Madi as Lady Gaga
This trip was no different and even held a few extra special moments to share.

Chance & Jeanne
Picking up on Wednesday……after a full day of appointments we headed back to RMH where my Aunt Gayle, Uncle John and Cousin Ashton were waiting for us to have dinner and visit!!  As always, it was SO good to see them, and we adored having some time together.  A bit later, our precious friend Jeanne and her beautiful girls joined the fun and, as always, brightened our day!!

Rachel & Chance
Everyone but Abby & Chance knew that this group of friends was there for a reason….beyond the obvious chance to get to visit and love on us, Chance & Abby didn’t know that there was an awesome, amazing surprise in store for the two of them!!!

Last Fall we learned about an organization called KeepKidsConnected.org during one of our visits to Houston at the RMH.  Several of our friends down in Houston had been blessed by this organization with their own netbook computers….so that each one of these amazing kids, all fighting a life threatening condition, could have the chance to keep connected with the friends and family that give them the strength and optimism they need to keep on keeping on.  When we were back in February, several more of our friends were being blessed and the kids got a chance to meet the people that are making this ministry possible.  That was all it took for them to express an interest in possibly applying for the honor.

After considering how amazing it would be for ALL the kids to have a way to stay connected without the need to share all the time (which they have all actually been so good about), and Madison expressing the desire for the one netbook we own being “hers”, we decided to apply and see what might happen. 

It just so happened that I heard back from the organization on the evening that Madison was inpatient right before we headed down.  I was literally thinking as I made my way home for the night, how amazing it was that, while getting poked and not feeling well, Madison had her friends WITH her at the hospital because of the wonders of technology.  And those friends that were right there, rooting her on, loving on her AS it happened, well, one of those friends was in Seattle and the other one was in Florida!!  How incredible is that!!??  So to get home and see the email from Keep Kids Connected….the one that said both Chance & Abby were approved…..well, it was pretty amazing.  Had there been any doubt how much that connection means, watching Madison that day had removed any that might have existed.  It’s vital, that connection…vital to the kids remaining positive when things are hard.

Needless to say, I was just a little excited for the kids!!!  Thankfully, I had the wherewithal to NOT share it with them so we could make it a surprise, and the lovely couple that run the organization were up for the fun of it all.  Poor Chance, he asked regularly if I had heard back from them and I just kept telling him I had not!!!

So, with our family and friends there, Jerry & Dawn from Keep Kids Connected made their way over to where we were all visiting, while I told Chance & Abby that there was someone I wanted them to meet. 


The look on both their faces, as they slowly realized what was going on, was absolutely PRICELESS!!!

It was truly a spectacular evening and it was one of those nights when, exhausted, you lay down in bed and just feel the warmth of all the love and joy that took place.  Thank you is not enough to express the gratitude we have for Keep Kids Connected and what they did for our kiddo’s.  What they did for ALL of us that love those kiddo’s too.

Some HAPPY kids
We all slept hard Wednesday night.  But there were plans for Thursday morning, so we got up and got ready to go to our FIRST visit to the Houston Zoo!!!  Yes, after 3 years of regular visits down there….being hounded by a special friend of ours that insisted we needed to take him….we FINALLY made it.  It has literally been either too hot or too cold or too wet before now to make it happen, but we were SO excited to finally be heading over, and the weather was PERFECT.

We had a BALL!!  It’s all of about 2 minutes from RMH and we managed to see it all in a couple of hours, leaving us time for lunch before our afternoon appointments.  So glad we can finally say we made it J  and sincerely hope there are more visits in our future down there.

Yes, that's my mom doing rabbit ears!!
Thursday evening we had plans to meet the female half of the Andrew’s family at Build-A-Bear for a much anticipated adventure.  The girls and Madison A. had decided that a visit to B-A-B was mandatory at some point in February when we were down then, so by April they were all three chomping at the bit to get there already.  We met Beth & Madison at B-A-B and the girls went about finding their perfect animal to stuff while Beth and I got a chance to visit a little bit.

Truth be told, it’s been a LONG time since I was in Build-a-Bear!!  Like YEARS!!  I wasn’t real sure what to expect, especially with the girls being older, but it was truly a delightful experience!!  The girls chose peace Bears to stuff and we were then off for the ritual of stuffing their treasures, where the lady working there made it TOO precious!!  All three bears each have three hearts for each one of the girls, and not just any hearts, these are hearts that have been wished upon by each girl, kissed, and a friendship cheer sealed the deal.  

After a bath, these special little guys were named, and after some debate over the best names for them, they became (so very appropriately) Best (Madison A’s), Friends (Madi M’s), and Forever (Abby’s)!!! 


The whole thing was a lot more fun, and far more precious than I could have imagined!!!  We then had dinner with the A girls and just soaked in the time we had together, knowing it was coming to an end sooner than we wanted.

Best, Friends & Forever

Finally, on Friday we went about getting ready to head home.  The girls and I made a quick run over to the hospital first for a few last minute tests we needed to get done before leaving, and then it was time for packing and cleaning.  As organized as I am, and as good as Mom and I are at getting the room cleaned, it still takes us a few hours to get ready to head out the door.  The kids helped with the initial stuff, then headed downstairs for some time with their friends before we headed out.

While the plan had been that Jeanne and the girls would head over for a final farewell, it’s always questionable with Gabi and her seizures whether they will be able to make it.  Needless to say, we were THRILLED when they made it and we had a half hour more to visit and love on them before we hit the road.  Could not have asked for a better way to end our visit down.

It’s in these moments I am reminded how amazing our exceptional life really is.
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