The Prescription

My last post was back in May, May 8th to be exact.  In 48 hours everything was going to change.  On May 10th, I woke up with a bit of pain on my right side.  Through the years this pain has randomly appeared.  Most of the time, I just lie in bed for awhile until I feel better.  I had talked to a couple of doctors and most of the time it was brushed off or attributed to any number of things.

This time was different.  As you know, as the mother of a son with special needs, I just gotta keep going.  I got up to get Adam ready for school.  I mentioned to his nurse that I wasn't feeling well and had pain in my abdomen on the right side.  I took Adam to school and sat in the van while he went to class.  By the time his class was over 45 minutes later, my pain level was getting pretty bad.  I still managed to drive us the majority of the way home before I knew this was not going to go away and I was not okay.  Adam insisted that I go to the hospital.  His nurse took over driving and off to the ER we went.  I ended up collapsing at the hospital entrance.  From that point on things are a bit sketchy.  At some point, David and Adam were told that they were admitting me.

I ended up spending 24 hours in the hospital having all kinds of tests.  Ultimately the diagnosis ended up being Crohn's disease.  All of the problems that I had been having over the years now had a name.  I really didn't know very much about Crohn's disease at the time.  Adam had been researching it online and the person who has needed care all of his life was determined to take care of me!  He learned as much as he could about the condition.  Talking about a reversal of roles! 

Crohn's disease is fairly serious.  If it is not well controlled the complications can be very bad.  I went home from the hospital with instructions to take a lot of medicine.  I am not a big fan of medications and will usually refuse Tylenol.  Suddenly, I am taking pills by the hands full.  I am now down to 11 pills a day!  Woot Woot!

One of the complications of Crohn's disease is debilitating fatigue.  This hits me pretty hard, especially when a lot of the time, I have to just plow through and do what has to be done. 

This weekend I got the chance to get away and join some of my special needs mama friends for a retreat in Rockford.  The main rule of this retreat was you only had to do what you wanted to do.  Nothing was required.  The whole point was to have fun and relax.

I was kind of concerned going in to this retreat.  Most of the services in our area are geared to special needs children.  I was a bit worried that I was going to feel out of place since my son is 23 and no longer a child.  I was delighted to see mamas of all ages.  I knew from the first few minutes of this retreat that I was going to have the best time!  First of all I was with some pretty awesome ladies.  Kelly Whistler, Tina Krajewski, April Anderson, Terry Cortes and I are all friends online.  We have gotten together several times to support each other and have fun.  Tina, Terry and I all have children with Spinal Muscular Atrophy so we really understand each others struggles. 

We all settled in for a fun weekend.  The retreat opened with a key note speaker who had us cracking up.  She had each of us introduce ourselves and tell what we loved.  And we couldn't say our family.  That was a given.  I had to think pretty hard about what I wanted to say.  This was a challenge because I have had laryngitis for the last two weeks and this late in the day, I couldn't talk more than a whisper.  I finally settled on music and laughter as my things that I love.  Both of these things can change my mood and turn a day around for me. 
Next came the really fun part!  A big part of this retreat is pampering.  Massage therapy, reflexology, manicures and hair cuts were offered.  Each person donated several spots that were going to be raffled off. The first raffle was for a 30 minute massage.  Name after name was called and then Kimberly Sullivan!  Woo Hooo!  I won a massage.  I was so excited.  I had brought money to pay for a massage but I was going to get one for free!  My friends each had the chance to win as well.  In fact every single lady at the retreat got one of the services for free.

The evenings events were winding down. I was pretty run down and so I had to call it a night instead of staying up and chatting the night away.  I really wished I could have hung out with my friends but I had nothing left in me.  So off to bed I went.

My massage was scheduled for 9:40 so I got up to grab some breakfast and then off to enjoy my massage.  It was glorious. All of the achy spots were massaged away and was relaxed.  The rest of the day was filled with crafts, shopping, exercise sessions, relaxation techniques or just visiting and chatting.  Whatever we wanted to do.  During supper more raffles were held.  Each person received two raffle prizes.  We were really spoiled with gifts.  The evening ended with a painting class.  I love to paint and really enjoyed two hours of creativity.  It was really fun painting with my friends.  We talked and encouraged each other.  In the end we each did an amazing job on our paintings.  Each one was different, even though we started with the same concept.

Once again, fatigue had reared its ugly head and I had to cut my night short and call it a night.  I was really bummed to miss out on the chance to chat with the girls.  I am sure they all had a great time, but I needed my rest, so off to bed for some rest.

Sunday was the final hours of the retreat.  We packed up our things and had breakfast before the closing session.  I knew it was going to close with a White Elephant Gift Exchange.  I had no idea that this was going to be the best part of the whole weekend.  Everyone brought a gift some nice, some silly.  Everything was wrapped and put in a pile in the center of the room.  Names were pulled one by one and gifts were picked.  As it would happen, I picked a silly gift and all of the women had a lot of fun laughing with me about the silly gift I had picked.  I laughed so hard.  I laughed so hard that my ribs were aching from the craziness.

At the beginning of the retreat I was asked what I loved, what made me happy.  My answer was music and laughter.  This weekend was filled with laughter.  It started with laughter and ended with laughter.  It was truly what I needed to nourish my soul.  It was the one prescription for what I truly needed, laughter and fun.

Just One Minute

For years, I have done as much of my son Adam's care as humanly possible.  He and I are a great team.  I kind of instinctively know what he needs, and he needs that mom touch that no one else has.  It is all well and good to be so in touch with each other., but at times, I just really need to not be in charge and to get a break.  We have nurses that help during the day.  We are very fortunate to have two great nurses that I feel comfortable with, I can confidently drop Adam off at school with either one of these nurses and know that all of his needs will be take care of.  I also feel very comfortable running errands or taking a nap with Adam in their care.  However, I still do the majority of his care.

I didn't really understand why I felt like I needed to be the one to do all of his care.  Adam is really slow to develop the trust needed to allow others to care for him.  It honestly takes him about a year to become comfortable with a nurse.

One day, I was chatting with one of our nurses.  I was telling her a story about a time that Adam had been injured in the hospital.  He had just had a major surgery where surgeons placed rods from his neck to his hips to correct the severe scoliosis that resulted from his Spinal Muscular Atrophy.  He was not even 9 years old at the time.  The surgery was done in Chicago, an hour from our home.  I stayed with him throughout his 13 day hospital stay.  I only left his side to eat and go to the bathroom.  The one time the nurses had chased me off of the floor to get some sleep, he ended up getting too weak overnight and had to go back on the ventilator.  One of the hospital respiratory therapist had spent the night in his room so that they wouldn't have to wake me up.  I felt immense mom guilt for leaving him and going to get a few hours of sleep.  I blamed myself for his set back.  Surely, me sleeping had caused him to get worse.

That same hospital stay, We were finally on the road to recovery.  Adam was finally being moved from the Pediatric Intensive Care Unit (PICU) to a regular room.  Adam would need to be monitored for a couple more days to make sure he was truly ready to be released from the hospital.  The nurses told us to gather our personal belongings while they transferred Adam down to the main floor.  David and I grabbed all of our stuff and headed down to the Peds Unit.  We took no more than maybe 5 minutes to gather our stuff and get back to Adam.  After Adam had gotten down to his new room, he told the nurse that he had to go to the bathroom.  An aide was sent in with a bedpan.  She carelessly shoved the bedpan under him, ripping open the newly healed stitches from a major surgery.
I came back from being gone for just a couple minutes.  In just that one minute, my whole faith in the ability of medical staff to safely care for my child in my absence had been destroyed.

It took me 15 years to finally understand why I felt like I had to be the one to do his care and why I absolutely can not leave my son in a hospital for a single night.  Now, I know why it takes him forever to feel comfortable with a nurse.  It really does only take one minute to make an impact on a person for the rest of their lives.

This post is dedicated to Cherry, John, Joyce, Debbie, Marla and George.  The nurses who have come into our lives and made me feel comfortable enough that I could trust them to care for my son.