The Shocking Truth about this Special Needs Mom

HorizonI’m greedy. It’s true.

In the beginning I would sit in the hospital at night and cry in exhaustion and terror over what was happening to Gus.  I just wanted to get off this crazy merry-go-round.  There were years when the hospital’s ER door was as familiar as our own front door, and it seemed like Gus was constantly being admitted for one malady or another.  We would get home, get settled, and go back to be re-admitted.  I would have given my right arm to spend a month at home without an admission.  Gradually, the years passed and the spaces between the admissions and crises have mercifully grown until they seem like they are no longer right around the next corner.  We don’t talk about it at our house – we consider it bad luck – but his last admission was 8 months ago and the one before that we almost made it to a year! But honestly, it never seems like enough.  I always want more.  I’m greedy like that.

The last 7 months has been an incredible time for Gus.  I truly do not know what has happened but suddenly (after 10 or 11 years…) so many things have begun to turn around for him.  I see more and more of his personality every day.  Chronic pain – definitely the worst issue he faces – has relented quite a bit.  I don’t know why but I know that I am beyond thankful.  Seeing your child in horrible pain all the time – the kind of pain that infects every aspect of your life until your sweet, happy-go-lucky little boy is sullen and even mean — is a very slow and awful torture.  For no apparent reason, certainly not medication-related, the grip that pain has had on him for so many years has loosened.  But I’m greedy.  I want NO pain.

We went on our first successful trip EVER a couple weeks ago. We went to the Oley conference in Connecticut so that I could have an exhibit table for Gus Gear there.  Previously, travel was not even a possibility because of Gus’ health.  Gus is 13 and this was our very first enjoyable overnight adventure. We waited a long time for that. We attempted a short trip last summer and it was a disaster.  To put it bluntly, it was an unforgettably horrible experience for the whole family.  But whatever has happened in the last several months has made travel possible.  It was exhausting for Gus – he has autism and this is a new experience for him so it really takes a lot out of him – but it was great!  But I’m greedy.  Now, I’m thinking….maybe we could take an actual vacation?

There were many YEARS in the last decade or so when I thought I would not be able to go on simply from sheer exhaustion.  Gus has been a terrible sleeper since he was about 2 and autism came into the picture.  Poor sleep is a fairly common complaint for autistic kids.  But I feel quite confident saying that Gus was somewhat exceptional in this respect.   People would ask if I had tried Melatonin for him and I would laugh hysterically (mostly from sleep deprivation).   What we were giving him just to get him to sleep are meds generally used for anesthesia.  Really.  The bedtime med cocktail he was getting was scary.  The pharmacy in the hospital often would not dispense all of it when he was inpatient because it was so far outside the normal scope.  But, you guessed it, Gus’ sleep has improved.  We do probably have a medication change to thank for beginning to turn his sleep around, but I think it only righted the ship for us.  Getting us back to shore has been the result of this global improvement Gus has had.  I have been able to completely wean him off the scariest of all the meds he was taking and greatly reduce several others.  His bedtime cocktail is still pretty far outside the norm even for those with chronic sleep problems.  And I am greedy.  I want more.  I want to see him off most, if not all, of them.  It’s greedy.  I should just be happy with where we are, and I really am.  But I want more.

Honestly, a lot of what has happened in 2017 is like a miracle.  (Yes, we still deal with intestinal failure, TPN, autism, being non-verbal, et al.)  Last year at this time I never could have imagined seeing so many smiles and hearing LAUGHING nearly every day from Gus! We were in a pretty dark place last year without a lot of hope.  Now, Gus is able to tolerate instruction and practice in highly non-preferred areas like PT.  He is actually feeling good enough to DO things and improve his skill deficits. All the decisions I have made for his care have always been about quality of life and I feel like he finally has some!  I don’t know why things have finally improved, but I am so grateful. And greedy.  I want MORE.

 

“We Cannot Imagine Life without It!”

FrancescaFrancesca’s surgeon recommended Gus Gear’s central line wrap to her parents while she was in the hospital.  They contacted us right away and she has been using our central line wrap ever since. (You can see it in the picture if you look closely) Here are some thoughts from her parents:

“After having a line break in the hospital, we realized we needed better protection for our then six-month-old’s central line. The central line wrap protects her line from breaking and it also protects the Broviac dressing. We had been doing bi-weekly dressing changes because the dressing kept falling off, but since we started using the wrap, we are back to a weekly dressing change schedule.

Having used the wraps every single day for over five months, we have experienced firsthand how they keep our little one’s line safe. She explores, walks and climbs everywhere without fear of pulling or breaking her central line. 

I tell everyone and anyone I know about Gus Gear’s central line wrap – especially nurses and parents! They should all know about it! It’s such a no-brainer and we cannot imagine life without it!”

 

We want to hear your stories!  Email us your Gus Gear story to info@gusgear.net and you could be featured on our next Customer Spotlight.

5 Things Every Special Needs Parent Should Know

Pot HolesThe road of a special needs parent is quite simply paved with potholes.  Along my journey with my son, I have fallen into many of those potholes, but I’ve also learned a lot – about people, patience, and mostly about myself.  I’m far from done grasping all that my son has to teach me, but I have realized how profoundly this experience has changed me and what it has imparted to me so far.  This is what I wish someone had told me when I first started down this very bumpy road.

1. Ask for help

I’m not the kind of person that accepts help easily.  Or willingly.  Or gracefully.  I’ve always tried to do things myself, without bothering anyone else.  When my son was born, or more accurately, after he became ill, I began the long journey to try to accept that I simply cannot be everything that he needs.  Mom, nurse, teacher, TSS, BSC, SLP, OT, PT, psychologist, drill sergeant, procurer of equipment, supply order-er, scheduler, case manager – the list goes on and on.

All I ever wanted was to take the very best care of him and of his sister, but because his needs are so great, that means I have had to learn to ask for help.  If I don’t ask for help regularly, I cannot fill all the very demanding and necessary roles in his life.  Because, in the end, my goal is not to do it all alone, but to have him grow and learn and have the very best quality of life possible.

2. Don’t let anyone tell you they know more than you about your child.

This life I’m living as a special needs parent requires firm and decisive decisions, even when they are uncomfortable and unpopular.  I’ve been told many times something simply “can’t be done” and I tend to see that as a personal challenge.  You think potty training is out of reach for my 9 year old?  Wrong – it has taken a will of steel and the help of many others who are invested in helping Gus (see #1) but he has been continent for nearly 3 years.  I know best about my child, and you know best about yours.

3. You can’t do it all.

I still struggle with this one.  If only I could…………you fill in the blank.  There is always something that gets short-changed and I think that is just part of life.  Sometimes I don’t get to every single PT exercise we are supposed to do.  Sometimes I let Gus stim a little too long on his favorite IPad book so that I can have a cup of tea in relative peace (minus Dr. Seuss’ Sleep Book or Peter Rabbit droning on in the background over and over and…)  Occasionally I give myself a break from making Gus “help” pick up sticks in the yard or put his clothes away simply because it is easier!  I’m human and I have my limits.  And tomorrow is another day.

4. Every challenge will eventually be a memory – one you will either laugh about or cry over.

Black Bean BoyOr, as my mom would say, “This too shall pass.”  When you are in the thick of a problem or a challenge, there is no worse feeling.  No more helpless, awful dread of just how bad it is.  Maybe your son scratches you incessantly and you are covered with marks all over your hands and arms in various stages of healing.  Maybe people ask you when you go to the grocery store if you have a really mean cat…   Maybe your son likes to sneakily take butter or black beans out of the fridge and mash/smear them everywhere.  Maybe his chronic pain is so bad that he cries and hurts himself all day, every day and you think it is never going to get better.

Sometimes it’s days and sometimes it’s years, but everything eventually changes.  We have gone through some really, really daunting challenges with my son, but no matter what the problem has been, it eventually changes.  It may not stop entirely or be fixed completely, but time has a way of marching on and you keep marching right along with it.  I look back on the Great Black Bean Incident of 2009 and laugh now.

5. There is no going back.

I used to believe that someday, after a lot of hard work on my part of course, things would “get back to normal.”  Insert laugh here.  I spent a lot of really precious energy in the beginning in trying to get back to somewhere that didn’t exist anymore.  My energy would have been better spent adjusting to the “new normal” and trying to accept that my life would be different than I ever could have imagined.

There is no going back, only forward.  And I know that I am a much stronger, more resilient person that I ever would have been if I had lived the life I had thought I was preparing for.

 

This is what I have learned while traveling the very well-worn road of special needs parent.  Surely I have much more ahead that my son will graciously impart to me as we continue to learn and grow together so that everyone in our family can have the very best quality of life possible.  I’m just trying to fill in some of the pot-holes as I go.  Please share this post with another special needs parent!

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