Back to Good ...

It’s almost been five months since Austin’s not been in school; it was sweet to send him back today.

I must admit I had a slight lump in my throat and a knot in my stomach, this felt like such a big step, a big adjustment for both of us.  Austin, like many with autism and fragile X is a creature of routine and he grew quite fond of hanging with mom for the last five months.

He was dressed and ready to go about ten minutes early and did well with the waiting.

We got to the doors a little early and his aide wasn’t out there to greet him but there was no holding him back at this point.  I just asked – “Do you know where to go?” to which he replied “yep”.

My morning began with errands and phone calls, some outside of the normal routine.  I dropped our fee for the ambulance service bill for the breathing treatment (after the pepper spray incident at the school) to the board of ed, they said they’d submit the $100 fee through their insurance.  At home it was once again time to call the Henry Ford Health Systems billing service but not our typical call this time I had to make sure I wasn’t overpaid.  Saturday we received a check because we paid for services that ended up being covered by Hap and Medicaid.  There was no breakdown of what it covered so I only wanted to confirm we weren’t overpaid, that somehow the ER visits in which Hap did cover the co-pays weren’t included – that call went pretty smoothly.

Next I did a little shopping and banking, while packing Austin’s snacks in the morning it was evident that we wouldn’t have enough special treats to get through the week.  When I did arrive home I did what I’ve wanted to do for the last four months, turn the music up and dance J. 

I didn’t realize how much I missed my alone time with music until I had the opportunity today to sing and dance alone in my living room J. Two songs in and the phone rang (thankfully I was in the kitchen, next to the phone and heard it otherwise I might have gone on the “bad mommy list” for ignoring calls from school).  It was the school nurse, right after lunch Austin got a little sick. 

Now, I know Austin pretty well, we do have a little history together. I know what a sensitive gag reflux he has, I know if he eats too fast we will have consequences and I know he will at times try to manipulate us, manipulate situations – maybe just a little.  I’m sure he missed me and after a brief conversation with the nurse and with Austin it was decided he would ride the day out (I always pick him up early so he only had about 1.5 hours to go). 

So mom got back to her music, which was so much fun.  I use Gen’s old iPod in which I have some of her music and mine, when it shuffles it’s always interesting.  I think I covered five decades of music and almost every genre. The shuffle was quite interesting since we’d jump from the 80’s with the Eurythmics, to the 70s with Edwin Starr, to present day with a little S&M from Rhianna and I had a little fun with One Direction too. 

Austin did manage the rest of the day with no problems and as a reward I let him get a happy meal on the way home. The History Channel is once again on the TV and all is well.

Normal is going to feel good, normal I hope will last and “normal” will only be how I decide to define “normal” – it has so very many meanings.  Even the call from the nurse reminded me of normal - it is what it is. Looking forward to tomorrow morning and a few more tunes with the iPod on shuffle let my new and old normal begin again. 

In the nick of time ...

Doctors appointment for Austin today, sadly we got there early (like to be punctual) and had to wait and wait.

Our regular doctor was out but we knew that was coming, we were scheduled with someone else. She had a beautiful 8lb baby boy yesterday and from what I heard they are all doing very well. She is already missed by the staff, Austin and I.   After being there over 1.5 hours I asked if we could just have someone fill out a release form so Austin could go back to school.

He was doing a great job waiting but in situations like this one never knows how long it will stay good. That's life living with one on the autism spectrum, things can change in a blink of an eye.

Thankfully, the head of the department, hematology/oncology, who attended to him while he was in the hospital was available and she saw us instead (bonus - this worked out well for the two patients waiting behind us - shortened there wait, moved them up).

It was a very typical appointment, temp, blood pressure and they told me numbers looked good, typed up our release and in five minutes we were done. Dr. D was very pleased in how well the Rituximab treatments had worked in bringing his numbers back up to the normal range.

It almost feels like years ago when I had to sit down with the girls and tell them about this treatment, when in reality it's only been three months.  I was a little worried about that first round and knew that I couldn't hold back anything on the risks of the treatment with the family - a single treatment could be fatal.  Just six months ago I would have never dreamed that I'd have to have life or death discussions with the girls, explaining that we were in a no win situation, we had to go with the treatment otherwise his condition would have been fatal. On some days it feels like I have aged 100 years and on others, most of the time, I am just so happy we have today.

Blood draws will be every other week now and we can go back in six weeks (instead of four) so they can take his temp, blood pressure and hopefully once again tell us all numbers look good. $30 every time we walk into the office for this routine, makes me cringe a little but what can we do - too bad we can't have e-visits.

Breathing a little easier with each passing day, hoping we stay the course.

Austin was rewarded with a couple of his favorite items for doing so well waiting, a Dew and a small bag of M & Ms. Naturally during the wait I think I heard twice a minute "I'm hungry" :-).

We ended up leaving the hospital just in time. When we got down to the lower self-park area it was starting to fill with smoke.  And, Austin said "Holy Smoke Batman"  :-).  As we were almost out we had to pause to let the police go by.  I'm happy we got out of there when we did because I didn't want the Flex smelling like smoke for months to come.

He's happy to be home and once again the History channel is on the TV - I'm looking forward to 4/28 from 8 am until 1 pm there will be NO History channel on the TV.  The TV won't even be on :-).

Resilient

If it’s one thing my kids are it would have to be resilient and as a mother I think I’ve done the job I needed to do.

Austin’s numbers are good. We see the hematologist tomorrow and I’ll have them write up the release to send him back to school after Easter break.

Gen didn’t get selected this weekend for the hockey team she wanted to make but she’s already moved on. She’s joking and looking forward. Gotta love her sense of humor, she texted the skills coach she works with about Monday’s session and asked “Am I on for Monday or have I been cut from that too? lol”

In our household we look forward not back.  Yesterday is over, it is what it is. Today and tomorrow is a whole different ball game or should I say hockey game.

I only admire Genevieve for putting things in perspective, in reality hockey will only be a very small part of her life. In the big scheme of things ten years from now it’s really not gonna matter what team she played for yet going through these experiences as a fifteen-year-old does matter. She’s demonstrated how irrepressible she is.  No matter what happens in life I’m pretty darn sure she’ll land on her feet.

Shouldn’t we all treat life that way?

Do you want to spend your life always looking back?

If you do so you’ll miss so much today and tomorrow that you’ll never get back and you’ll only have a life filled with regret and time wasted. On that note I’d like to end with the Apache Blessing:

May the sun

bring you energy by day, 

May the moon

softly restore you by night,

May the rain

wash away your worries,

May the breeze

blow new strength into your being.

May you walk

gently through the world and know

its beauty all the days of your life. 

In Your Dreams ...

It’s Monday we’ve done our blood work and I’m anxiously awaiting the results.  Last week was the first week with no steroids, I’m hoping things just level off and we will soon discover what our new normal will be.  

While I was writing this the numbers did come in, all is well, we’ve hit a new high for the hemoglobin, 14.9, I sigh with relief yet my mind still wanders to what next Monday will hold.

Yesterday afternoon Austin had a meltdown which makes me sad, it just came out of nowhere.  I’m thinking something physical might have been going on in his head or body.  I just wish he’d remember if something hurts, if something is wrong, he just needs to tell mom.  Later he told me his head hurt, not sure if it was hurting before or hurting because of how hyperaroused he got.  I’m 90% sure if I was hyperaroused, unable to regulate myself, in full meltdown mode, my head would hurt afterwards too.

Episodes like this are always followed by extreme remorse, he’ll weep and ask forgiveness and sadly he’ll make a promise that I know he’ll never keep “I won’t do it again”.  I know he doesn’t want to ever do it again but it’s not something he can regulate. When he starts to meltdown there are times I can’t redirect it, I just need to let it cycle through, cycle through the rage so we can get to the sorrow. The switch has been flipped and it appears to be on a timer, it has to cycle through.

It’s utterly amazing that through all his illness and all the meds, all the roids, the hospital stays, the treatments at the cancer center for his infusions his behavior was remarkably good. Some things just don’t make sense at all and I have no recourse but to be thankful and feel blessed that he did so well.

Last night I had the strangest dream.  Fragile X and autism can be challenging enough and it ticks me off that it woke me up feeling like I was having a panic attack in the middle of the night

In the dream I was in a auditorium having to pass in front of a few people.  There was a family with a couple of young men with them who had special needs and when I passed in front of the one they grabbed the tendon behind my knee and was twisting it.  I looked at them and said “Please don’t hurt me”, they let go.  I gently stroked his face and told them it was okay.

That’s not what bothered me, what broke my heart was the look on the parents face, a look of hopelessness, a look of sorrow and all I wanted to do was comfort them, to take away their sorrow. To let them know I wasn’t upset with them that I understood, that I have walked in their shoes.

At that point I awoke to a pounding heart, my pulse was racing and I was filled with terror.  Why? Because in reality, behind closed doors that family exists, I know it, I feel it, I’ve lived it and it saddens me that I can’t make it go away. It wasn’t the action of the young man because I realize that they were not in control, what broke my heart was the look on the parents face.

There are things in life we have no control over and there are people who may never get it.  It wasn’t just the hopelessness and sorrow that touched me, it was the look of understanding and compassion in their eyes that broke me down. The sense of relief that somebody understands, somebody cares, that others would not pass judgment.

Last night as I laid there I was angry that my dreams were modeling the part of life I’d like to lay to rest, I’d like to not focus on. Really in my waking hours of the day it’s challenging enough on some days to deal with fragile X and autism, I don’t need to deal with it in my dreams. I want dreams of a calming ocean, I want dreams of flowers, sunshine, friendship and love. If my dreams aren’t going to deliver it I guess it’s critical that I do find it during the course of my day. And with that, I told this tale to the girls this morning and we laughed, that even in my sleep sometimes fragile X and autism really ticks me off, fires me up.

And just maybe I had that dream to remind me to share with others, to let them know I do understand, I have walked in your shoes and no matter what, we are not failures. No matter how battered, physically or emotionally we are at times, we still go on no matter what, we never lose sight of the calming ocean, the flowers, our friends or the sunshine. 

“Courage isn't having the strength to go on - it is going on when you don't have strength." ~ Napoleon Bonaparte

Time ...

Seems to be the one thing I have struggled to manage lately.  Often too little and I wonder why we are never happy as it passes too quickly or slowly.

Austin’s numbers are still very good, hemoglobin is at 14.7 – the highest yet, platelets are still running high but we took the last dose of steroids on Monday and I’m wondering if that will help them drop.

Time still weighs heavy on my mind lately as I prepare for a couple of good-byes.

Judy from the lake will be missed dearly, I would have never imagined last September that I would not be seeing your smiling face this summer. Visitation at the funeral home will be today and like any time like this I falter in what to say, only hope I’ll find the right words to express my sympathy. 

Tomorrow we’ll say good-bye to Carri. Her time with us was far too short, thankful that Carri packed so much into what little time she had with us.  I’m hoping it will be a true celebration of her life, her spirit.

I’ve decided that time is just not something that can be micro-managed. There are only 24 hours in each and every day and what will be important is that during that time I do what matters. I do what I can, when I can, and accept that there will be moments that I’ll be unable to do all that I may want to do.

Today is important because none of us truly know if we will see tomorrow. So please, spend your time wisely. Find something to laugh about today, find someone to hug and share your love.