Sunday, October 8, 2017

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.

Monday, May 8, 2017

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.

Saturday, December 24, 2016

Merry Christmas Adam

December 23rd.  It seems like such an ordinary day.  It's the day before Christmas Eve and two days before Christmas Day.  For all practical purposes it is really just another day.  I once heard December 23rd referred to as Christmas Adam.  Why Christmas Adam?  Because Adam came before Eve.  So if Christmas Eve is December 24th, then the day before must be Christmas Adam.  I have no idea who came up with this.  Since my son's name is Adam, I think its cute.

Christmas Adam became a very special day three years ago.  It started out as a very scary day.  My step sister Amber was pregnant with twins.  She was just 31 weeks and had a really bad cold.  During a really bad coughing fit her water broke.  The precious boys were in danger.  She lived quite a way from a hospital that had a NICU that could handle such tiny tiny babies.  Fortunately they were able to get her to a hospital in Indianapolis with a NICU before she had the boys.  The boys were born very tiny.  One three pounds and one tiny little peewee right around a pound (sorry I don't have the exact info)  This was our very first Christmas Adam miracles.  Those tiny little guys were born fighters.  Today they are adorable three year old toddlers.

Yesterday was another Christmas Adam.  December 23rd rolled around.  Rumors were flying that this was going to be a tremendous day for a certain group of people.  This group of people have been waiting for a miracle for a very long time.  2016 has been a banner year for the families of people with Spinal Muscular Atrophy.  Research has come a long way and a treatment for SMA had been submitted to the FDA.  Everyone was pretty sure that it was going to be approved for children with Type 1 SMA.  The research had proven that giving these kids, who frequently die within months of birth, this new drug was life changing for them.  The disease was being halted and many have made miraculous recoveries.  We just weren't sure if the FDA planned to approve the new treatment for all types of SMA.  There had been research to show benefits in other types of SMA, but would the FDA still approve it across the board.  All day long Friday, I kept checking Facebook, waiting for the announcement from Biogen that the new drug Spinraza had gotten FDA approval.  Every time I looked, nothing.  Finally as I sat down at church to enjoy the Christmas service, I checked Facebook one last time.  I try not to mess around on my phone at church.  God deserves all of me.  I quickly opened Facebook and there it was!  Spinraza approved for all types of SMA.  I quietly screamed YES!  My husband glared at me and I showed him the screen.  The lights dimmed and tears fell from my eyes.  All I wanted for Christmas was Spinraza to be approved.  Now, every baby's family diagnosed with this horrible condition won't have to hear, "there is nothing we can do, take your baby home and wait for it to die".  There is now a treatment, a hope, a future.

Christmas Adam is a day for miracles.  Every family affected by SMA in the United States received the one gift they really wanted.  Hope for their child.  A treatment, a future.

Today, is Christmas Eve.  A day of preparation and celebration for Christmas.  People will gather with their families and there will be excitement and anticipation.  Tomorrow Christmas will come.  The celebration of another long awaited miracle.  The birth of a tiny baby, born in a stable.  The Christ, The Savior, The Messiah, the hope for all of humanity came.  He came wrapped in rags, lying in a feed trough. Welcome Jesus, the first Christmas miracle.

Its only right that Christmas Day is reserved for the miracle of Christ's birth.  But 2000 plus years later, on December 23rd, another day of miracles has come.

Saturday, November 26, 2016

Truly Thanksgiving

After my last post about me feeling like a very poor servant, I was bombarded with messages from God through various people.  Before I share what I have learned, I want to pause a bit to explain the purpose of this blog.

I write my blog because I feel like it is my duty to use a gift that God has given me.  God has given me the ability to communicate clearly to others.  I feel like it is my responsibility to open a window into my life and the challenges of being a special needs family so that you can walk in my shoes.  It is my hope that peeking into our lives and viewing the struggles that we face, you will be able to better understand the special needs families in your life.  So many times people have told me they don't know how to act or what to say around our family.  They are afraid they will say or do the wrong thing.  Guess what!  It happens all the time.  It is not about saying or doing the wrong thing, its about the heart behind your words or actions.  So many of the special needs mom's I interact with feel so isolated in life.  They need  you to reach out to them.  Take the risk, make the ask.  It is my hope that sharing with you will give you the courage to understand the special needs folks in your life.

Now back to God and the great big sermon He had for me.

Adam helped me set up my blog and he reads every post.  I asked him for feedback.  WHOA Nelly!  We happened to be in the van and Adam and I were alone.  Young Mr. Sullivan figuratively stepped up to the pulpit and began to preach.  He spent the next 20 minutes giving me a sermon on "Do you want your praise from God or Man"  Honestly, I sheepishly told him both.  Wrong answer, I know.  My little preacher man told me that as well.  It really is hard to go through life truly waiting for praise from God.  Can I just say it is really hard hearing spiritual truth from the same person you gave birth to?

My next message came from my dear friend Denise.  Denise is my section leader at church.  She and I have bonded and I love her dearly.  God has placed her in my life.  Sometimes I am not sure if she is my mentor, or if I am hers.  I think we just walk along side each other holding each other up.  We are Caleb and Joshua leading our own individual pack of Israelites into the Holy land. After Denise read my last entry, she jumped in with virtual hugs and words of encouragement on how she sees me serving others.

Next on the list to join in on the sermon was David.  Now David is a man of few words.  He doesn't say a whole lot so what he said meant a lot.  He told me, "I read your blog, you don't need to feel guilty about me."  Just a few words, but they were packed with meaning.  He touched my heart.

 Monday is my busiest day of the week, and the day when I am most likely to want to go hide under the covers and hibernate.  On Monday (and Wednesday) Adam has a 3 hour and 20 minute biology class that goes from 6-9;20pm.  This class moves fast and the teacher does not give a single break.  The chairs are high and the pressure on my back and legs makes my back hurt so bad.  Monday, I generally come home nearly in tears and all I want to do is grab an ice pack and head straight for the couch.  This time, David risked his life by stopping me to chat at the front door.  He told me he found something in the car.  Next he handed me two envelopes.  I opened the first one and saw a gift certificate for a manicure.  I asked where it came from because I knew we don't have the money for such luxuries right now.  He said that one of my Facebook friends had contacted him and made arrangements for a manicure AND a massage! (I am not going to mention her by name as I don't know if she wants her generosity mentioned.  I was able to thank her via Facebook messenger)  The tears of pain turned into tears of gratitude.  She lives in China and I know she had to go to a great deal of time and trouble to do all of the research to make this happen.  I will never find the words to convey to her how truly special her gift is and how much I really appreciate it.

Thursday nights are my nights off.  David goes to Adam's night class with him and I get to stay home and rest and recover from a very busy week.  Usually I talk to my mom for an hour or so on Thursday nights.  She isn't online and doesn't get to read my blog.  I told her about my blog and the very sweet gift from my friend.  Mom and I chatted for a while and she and I discussed my feelings of inadequacy as a servant for Christ.  The next day she called me for the final part of God's week long sermon.  She had made a list of 20 times that she had seen me serve God.  Most of the items on her list I had completely forgotten about, or just didn't consider them as acts of service.  Once again, I was in tears.

This week the calendar told us to gather with family for a feast and to spend a day giving thanks for the good gifts in our life.  I am truly thankful for a God that hears the anguish of one of his children and sends a whole army of people to show His love for his child.  So to all of the people in God's Army who have blessed me with words and actions since my last blog post, Thanks(for) giving.

Sunday, November 13, 2016

The Serving Heart

Last night at church, the sermon was on Serving Everyone Always.  It talked about how Jesus washed the feet of his disciples prior to his Crucifixion to show us that we must serve each other rather than trying to step on others trying to make ourselves feel important.

I left that service feeling like a failure as a human being and servant of Christ.  Honestly, as a special needs mom, there is nothing left of me to give to others.  My 24/7 job is to take care of the needs of my son.  Anything that is left, goes for trying to keep up housework and being my husband's wife.

At a recent church event, a lady asked me if I served at a particular women's shelter.  I am sure she was just making conversation, but (oops, laundry just buzzed, gotta go change the laundry) couldn't she see that I had my hands full?  My son was sitting next to me, in a wheelchair, with a vent and I had just fed him his supper.  When did she think I would have time to leave my son, my home and travel a half hour or more to help abused women?

Other times, I have felt guilty because I couldn't join my small group (oh wait, I can't go to my small group any more because my son needs me to be with him at his night class on Wednesday nights) in serving projects.  They were going to pack food for starving children.  Some nights I can't fix a decent meal to feed my family because I am too exhausted to cook.  In all fairness to my small group, they have not made me feel guilty, this is guilt I place on myself that I can't join them.  At times, they have provided meals for my family to help when I went an extended period of time without night nursing for my son (which means I have to listen for him throughout the night, sometimes getting up every hour or several times an hour)

Family can do a great job of making me feel guilty for not serving them as well.  I have been criticized for not helping with Thanksgiving or Christmas meals.  I was expected to be in the kitchen helping the women prepare food, or help clean up the meal, or wash dishes.  It never occurred to anyone that I had gotten up early to get my family packed for a weekend away from home and  taken care of the medical needs of my son.  All of this after getting very little sleep. Add to that, a three and a half hour trip to actually get to the family.  (oh wait, their house is not handicap accessible so I have to carry my son around, he only weighed 35 pounds, that isn't too much too carry right?)   But you don't mind mashing the potatoes or setting the table, right?

When people come to our home, I am expected to be Suzy Homemaker and have a perfectly clean house, offer snacks, make coffee, prepare a meal,  get toilet paper, etc.  The reality is when you come to my house, you are going to have to make yourself at home.  Get your own snack, make your own beverage, grab your own toilet paper out of the closet.(oops, Adam needs me)

When it comes to feeling guilty about not taking care of others, my husband is probably who I most feel guilty about.  I feel like a terrible wife.  Not only does he neglected at meal times, but a lot of the times he has got to help pick up the slack that I can't get to, or am too tired to deal with.  No hot breakfast before work for David, he has to make his own lunch, and sometimes he has to fix meals for Adam as well.  In fact, he does a pretty good job of serving me.  He usually runs out and gets me coffee and breakfast on weekends before running to his part time job.  He often will run out late at night to grab me a bite to eat when he realizes I forgot to eat and am now too tired to fix myself something with protein. (I need to have protein every time I eat to help alleviate severe protein deficiencies).  All of this on top of working, going to school and helping to care for Adam. (pause to help Adam again)

I love my son.  I will gladly give every ounce of energy to make his life easier.  I do everything he needs and try to do it cheerfully, so that he doesn't feel like a burden, (he does feel like he is  a burden, and that makes me feel bad as well)  I do this at the expense of my husband and myself.  My body is wearing out.  I have injured myself bad enough to require physical therapy 3 times.  Day to day, I experience pain.  But I gladly throw the servant's towel over my arm to care for his needs.  Unfortunately, that is all the serving I can do.

Now for a little me time.  I really want to do my nails.  Oops Adam is up for the day, I can't do my nails now.  I really need a manicure, but that costs money and that is asking someone to serve me.  Time to put up the nail supplies until another day.

Saturday, October 22, 2016

No Don't Touch

Yesterday I took my son to the movies.  By My Self!  Me and a 400 pound wheelchair, our service dog, my son's life saving medical equipment and my purse.  Its a lot for me to do by myself.  I really try not to go places just the two of us.  His suction machine alone feels like it weighs a ton and my damaged shoulders can barely stand the pain of its weight.  Without it, he could die.  It is just one of many things that have to go with us every single place we go.  My hands are full and my head is constantly focused on any situations that I need to be aware of to keep my son from danger,

You and your young child came at us while we were in between the double doors of the movie theater.  Do you know how hard it is to get through a single door? Let alone double doors.  Nope, you didn't rush up to help us.  You were in your own little world, you and  your little boy.  You didn't look up at the huge black dog and see danger, You let your child get out of reach.  Curious as children usually are, he went straight for the 60 pound dog at my son's side.  I used my strong voice and told him NO!  You yelled at me.  You told me I needed a better attitude.  You wouldn't even let me speak to say, your child won't stop if I speak softly.  He didn't listen to you, he sure as heck isn't going to listen to me if I use a soft voice.  Sadly, you have allowed him to believe that he can do whatever he wants.  My hands are full, I can't touch your child.  I only have a few seconds to protect my son and yours from danger.  This is not the time to use a quiet voice.

You don't see the danger, but I do.  Your child is out of your reach.  He is approaching a strange dog.  You know nothing about this dog.  I know this dog is gentle and won't harm him, but what about the next dog he sees and rushes up to pet.  Perhaps it will be a coyote, or a mean dog that will bite him and leave him scarred for life.

The biggest danger is not to your precious child, but to mine.  Your child distracting his dog could cause injury to my son.  Twice my son's dogs have pulled away for various reasons and nearly broken his tiny fragile arms.  We don't attach his dog to his arms for that reason, but you don't know that.  You don't care.  You don't care that your son is likely covered in preschool germs and when he touches my son's service dog, those germs just transferred to the dog's fur that will be hanging out waiting for my son to tell his dog good girl and reward her with the pets that tell her she has pleased him.  Those same germs that will give your son the sniffles can kill  my son.

You don't realize that your words have now ruined my afternoon.  My heart is broken because you refused to look at things from my perspective.  You don't know how hard I try to stay calm and have an enjoyable time with my son.  All you could see was the lady with the bad attitude who said no to your child.  I will spend the next 30 minutes trying to calm down, trying to make the adrenaline stop surging through my body.  You have ruined 25% of the two hours I have to spend alone with my son.  Instead of watching the movie with him, I will be talking myself down, trying to not be angry because once again another person just doesn't understand.

The next time you see someone out with their hands full, trying to take care of their disabled family member, take a hold of your child's hand.  Tell them don't touch and don't stare.  If they want to know more, ask the person or the family.  If I have time, I will stop and chat.  But please understand if I don't, because if I am alone with my son, I have to be on high alert at all times.  His life is in my hands.  I can't let my guard down for a single minute.  If his vent falls off, or he gets a plug, I only have 1-2 minutes to react and remedy the situation.

If your hands are free, grab the door.  I guarantee you will get a thank you from both me and my son.  And then I will smile and for one more second I will have one less thing to worry about.  And my day will be made.

Tuesday, July 12, 2016


My whole life I have struggled with being enough.  This weekend I spent the whole weekend being not enough.  I am not gardening enough, cooking enough, cleaning enough, doing enough.  I am just not enough.  This is the message that I have been hearing my whole life.

This constant state of not being enough is exhausting to my already exhausted, over worked body.

I am the mother of a 22 year old son in a wheelchair, on a ventilator.  In order for him to participate fully in life, I have to be fully involved and tuned into his every need 24 hours a day, 7 days a week.  I don't ever get to rest.  I never get to shut off.  I never get to not be in charge.

Never-the-less, people in my life still feel the need to point out where I need to do more.  It makes me angry.  It makes me feel undervalued.  It makes me feel like I am not enough.  

The people who seem to be saying I am not enough are the same people who couldn't maintain the level of activity that I have no choice to keep up with for 24 hours let alone 365 days a week.  My husband doesn't usually make me feel this way.  In fact, I am sure that he feels the same way.  There is always too much to do and not enough time. My son does not make me feel this way.  He asks a ton of me, more than I can do much of the time.  He realizes he requires a ton of care, and tries to stay distracted so that I don't have to be getting up every two minutes to take care of this or that need.  He frequently thanks me for taking care of him.  

The reality of the situation is there is a lot of not enough in my life.  Not enough rest, not enough time to relax, not enough help, not enough time in the sun, not enough alone time, not enough time to shower, not enough time to do the things that recharge me, not enough time with my husband, not enough escape from stress, not enough time to eat chocolate cake, not enough time to color, not enough time to paint, not enough time to devote to my chocolate business,  not enough time to read the Bible (this is one of my favorite things to do) not enough time to...  
The list just goes on and on.

Here is what there is enough of:  Love for my son.  Time for late night conversations and video games together.  Time to work on his homework together (not enough energy on my part)  Time to discover how amazingly smart my son is.  Time to spend days together exploring Chicago in his speech class.  Time to walk to 7 Eleven to have impromptu picnics of Slurpees, taco rollers for him and tacos for me. Time to go to movies, or Denny's or where ever else he wants to go for Mom and Adam Sunday date nights.  

These are the things that are important to me.  These are my priorities.  Taking care of my son and his needs is the only thing on my to do list.  Anything else that gets done is bonus.  When someone tries to guilt me into doing things they feel are important, they are robbing my son of my time.  When they try to get me to do things beside rest, they are robbing me of energy that I need to listen for Adam overnight when we don't have night nursing (I usually have 1-2 nights of night nursing, and hubby takes two nights.  That leaves me with 3-4 nights a week with constantly interrupted dozing)  

If I share some of my precious energy with you, you better appreciate it, because that means you are important to me.  Because there is just not enough of me to go around.