Thoughts on a Wednesday Evening

~Tomato soup and grilled cheese, mac & cheese, bread pudding—just some of the most comforting foods on Earth.

~Don’t say you’ll “never” do something because one day you might find yourself doing and enjoying the thing you said you wouldn’t.

~I’m enjoying watching baseball (Yankees) so much that I don’t know what I’ll watch when the season ends. This is a new activity for me. (see the previous thought!)

~I think the papers have won, and I need a secretary.

~2012 has not been my favorite year.

~Changes in friendships are inevitable as we all continue to grow and evolve.

~I think my smart aleck phone and I have come to an understanding—at least for now.

~Halloween is an odd “holiday”.

~Sometimes the best thing you can do is just show up and smile; the rest will fall into place.  This applies to about 80% of life.

~Sometimes you get what you want, sometimes you get what you need, and sometimes you get what you get.

About September 14th

Today my baby turned 20.  It’s a happy day.  It’s a bittersweet day.  It’s an emotional day.  Special days are always a double edged sword where Hillary is concerned.  I’m happy she is still here on this Earth and not yet in Heaven.  Every visit with her neurologist for the past few years has started the same way—with Dr. G. sitting across from Hillary smiling, beaming, looking from her to me and saying, “Well, she’s still here.  She looks wonderful.”  Could I ask for a better doctor for my daughter?  He’s the only neurologist we’ve ever taken her to.  If you knew everything the diagnosis of Aicardi Syndrome entails you’d understand his attitude.   Most children with the syndrome don’t make it to their 20^th birthday.  Yes, I am grateful for every birthday we get to celebrate with Hillary.  Yet, it’s a difficult day for me.  First is the gift.  This is one thing that just drives home the fact that she is not like her peers.  There is not a gift that will make her smile with pleasure, except perhaps a bouquet of Mylar balloons.  I know it’s not about the gift.  I do, but she deserves gifts just as much as any other family member.  So we buy her gifts, new outfits, new shoes, lotions, and most things you would expect to purchase for a age girl she is.  Unlike her sister, who is excited by gifts and shows it, Hillary doesn’t appear to care much, except for the balloons.  So I wonder, is it about her, or about my feelings?  Is there a part of me trying to pretend she is not the way she is?  Or do I just want to do what is typical in case she truly understands so she won’t feel slighted?  Perhaps the other gifts do really make her happy, she just doesn’t or can’t show it, or perhaps I feel like her soul knows and appreciates our efforts.

She had a fun day at school.  The chorus sang happy birthday to her during class, I brought in cupcakes for her regular class and they had a little party for her after lunch.  She so much enjoys being around her peers.  She brought home a gift from her “school mom”, her aide.  It was a beautiful outfit.  Once at home, things were quiet.  We were the only two here most of the afternoon.  I gave her the balloons, which I knew would be her favorite gift and bring a smile, and we opened the card and gift she brought home.  There was an e-card from an aunt and uncle which she watched on my computer, and we went outside to wait for my husband to arrive home.  It was getting late for her, she is so tired by dinner time.  After a quick dinner we lit the candles on the cake and sang the happy birthday song.  She enjoyed looking at the candles, trying to touch them, but I am careful to hold the cake just out of her reach.  Cake and ice cream and then off to bed with her; she’ll open her gifts tomorrow.  She’ll appreciate them more when she’s not exhausted.

  I didn’t finish this post that day, so I continue it now.  Saturday we went to the mall, something Hillary enjoys.  We stopped in where her sister works to say hello.  My husband and I opened her gifts with her later in the day.  She didn’t seem impressed; in fact, she seemed a bit angry that we were blocking her toy with her gifts.  She’s a funny girl!  I’m sure she’ll enjoy watching the movies we gave her, and the sweater will keep her warm.  On Sunday, she received her sister’s gifts.  Her favorite was the pair of lined moccasins.  She smiled when they were put on her feet.  Later we took her to dinner at Cracker Barrel, where she enjoyed the double chocolate coca cola cake with vanilla ice cream for dessert.

I’d have to say that Hillary had a nice birthday.  Some things I know she liked, and some I’m not sure.  I think she knows that she is loved, and that’s the very best gift we could ever give her.  I survived without too much emotion.  On to the next emotional mine field……er, holiday.

 

 

 

 

 

 

 

 

 

 

 

Summer Music

The sound track of my summer is different from the soundtrack of my work year, which is September to June.  During the work year I listen to one certain station on the radio in the morning that I can count on to keep me on track with time updates, and I’ve listened to it for so long that I really know what time it is instinctively by what song they are playing or whether they are doing a traffic update, an interview, or whatever programming is on.  Sometimes in the afternoon or evening I’ll listen to a CD or a music station on the TV.  But July and August are times that I listen to different radio stations and go to live performances.

               In the summer we go to fairs, festivals, and free outdoor concerts.  My favorite thing to do at a fair or festival is check out the musical performances.  This year I have three favorites, and they are eclectic choices.

               In June we went to a Scottish festival and the second we approached the field I was captivated by a lone piper surrounded by 5 drummers, it was Albannach, a Scottish band.  The massed bands is always powerful, so many pipe bands all playing the same song marching toward you in a block is an awesome thing, but the performance by Albannach  just fascinated me.  They are primal, and wild, and different than any other band I’d ever seen.  Needless to say I have one of their CD’s and occasionally check them out on Youtube.

               Every year we go to the local 4-H fair, and my favorite thing to do is hang out in the coffee house tent.  If I’m lucky we go on the day that Scott Hallock is performing.  We first saw him a few years ago, and something about his acoustic guitar and bluegrass style speaks to me. Primarily I’m a soft rock/pop music fan.  The first time we saw this performer at the fair he was singing a song he wrote about his grandfather.   Whether he’s covering a song like “Ode to Billy Jo” or singing an original song I look forward to seeing him every year.  He can also be seen on Youtube.

                Most recently, on our last night of vacation in Alexandria Bay, NY, we attended a free concert in the town park.  We didn’t know what to expect of the “Country Stompers”, but we picked up some sandwiches for dinner and headed off to the park.  It turns out that the band is local, has “groupies” who follow them from performance to performance, and are all over 70!  They were fantastic, playing covers of classic country western music from the Merle Haggard, Sr. era.  The groupies were dancing, and they even had a segment where the band called a square dance.  We were treated to watching the groupies square dancing, and all through the concert the audience, (my hubby and I included!) got up to dance.   A sing-along portion included “Roll Out the Barrel”, and they ended with “God Bless America” and all the groupies (mostly women of the same age as the band, I suspect) stood, holding hands with their arms raised as we all sang along.   Sadly, the “Country Stompers” are not on Youtube.  I think that may have been my favorite performance of the summer.

               In a couple weeks I’ll be back to the same old radio station and soft rock/pop, but in my head I can listen to any of these live performances any time I want.

The Speech

This is a bit longer than my usual posts.  Recently my friend sent me a text asking if I would share my story of caregiving at a meeting of the Caregiver’s Coalition in our county.  This is the speech, and Hillary was with me. 

 

My name is Sue and this is my daughter Hillary.   She is 19 years old and was diagnosed with Aicardi’s Syndrome when she was 6 months old.  Aicardi’s Syndrome is a rare disorder, only about 500 cases worldwide.  The three markers of this syndrome are absence of the corpus callosum, which is the part of the brain that connects the two hemispheres; seizures that cannot be completely controlled by medication; and very specific shaped lesions on the retinas.  Hillary is considered moderately affected by this disorder.  She is legally blind in one eye due to 11 lesions on the retina, and has near normal vision in the other which has only 3 lesions.  She has clusters of short seizures on average 3 times a day.  She has no verbal communication, cannot walk, and cannot take care of herself in any way.  She relies on those around her for everything—changing, rolling over in bed, getting into and out of her chair, bathing, and feeding.  She eats only mashed or pureed food and thickened liquids but doesn’t take in enough for good health so has a feeding tube as well.  I am her mother and her primary caregiver.  My husband and my adult daughter pinch hit for me, but 99% of the time I’m on deck.

Caring for Hillary has impacted me in many ways.  The emotional impacts cycle around the same as the grieving cycle does.  Disbelief, anger, and sadness are likely to hit at any time, sometimes brought on by something as benign as a TV commercial.  There have been times that happy occasions took on a bittersweet tone due to this cycle.  Whether it’s because she couldn’t join other children in a basement playroom when at a dinner party at a friend’s house, or because there’s no room for her wheelchair at the holiday dinner table it’s sometimes a hard pill to swallow.  

Financial impacts come from the cost of supplies and equipment that are either not covered by insurance or Medicaid at all, or are only partially covered.  Also impacted is my ability to work at a full time job.  I’m lucky to have found a part time job in the school system so that my schedule and Hillary’s are about the same, limiting how often I need my husband to take time off to stay with her.  There are only so many days that can be taken off a year and some must be saved for illness or emergency.

My health is probably the thing most negatively impacted by caregiving full time.  I have chronic back problems which are made worse by the physical demands of moving my daughter.  Other health issues are impacted by the need for someone to always be with her.  I have scheduled surgery around her pick up and drop off times from school.  No matter how I am feeling the same care needs to be given.  I’ve had pneumonia, stomach bugs, vertigo, and cellulitis at one time or another and still had to get up at 5 a.m. and get her up and out the door to the bus.  It's better to send her off to school so I have 6 hours to rest than to keep her home when I'm not well.  Being a caregiver is a non-stop, no time off full time job.

I wear many hats as Hillary’s caregiver.  First I am her mother.  Other hats I’ve worn are nurse; physical, occupational, and speech therapist; wheelchair tech; case manager; and advocate. Last year the brakes on her chair broke and although the vendors are quick to come out and diagnose a problem, they are extremely slow in fixing it.  In spite of my having given them my credit card information and asking that they go ahead and order the part so the repair could be done quickly it took at least 6 weeks for the repair.  In the meantime, I figured out a way to make it work.   I’ve gotten money back from a health insurance company when they were not processing claims properly, I’ve gone toe to toe with school administration, and I’ve fought with the DDD to get the help and equipment we need to keep Hillary at home, in her community and happy.  I’ve written countless letters over the years and one of the things I’ve learned is to never send a letter to only one person.  I copy many people on every letter I write to anyone.  I’ll copy to the person’s supervisor, their supervisor, my state representatives and senator, the head of the state agency involved, the public advocate, the governor, an advocacy group, and anyone else I can think of.  The more eyes that are looking at a letter, the harder it is to simply brush me off. Eventually someone will look at that letter and say “hey, this isn’t right” and make a call that gets things going.   I’ve also learned to keep most of the emotion out of the letter and to be specific as to what type of help I am seeking.  Keeping a more businesslike approach has served me well.  Another area where this approach has been useful is during meetings.  When I have felt my emotions getting the better of me, I have stopped the meeting and either taken a break or asked that we reconvene another time, or suggested we finish up with a phone call in a few days.  This approach has allowed me to be the one in control, not someone else who doesn’t know my daughter as well as I do.

My greatest caregiving needs are equipment and respite, and I don’t think there could ever be enough respite.  The logistics of getting Hillary around and making sure there is someone to care for her when I am not there are at times daunting.  I can’t accept an  invitation, make an appointment or even go to the store without thinking about what Hillary will be doing, where will she be, who will be with her.  With our wheelchair conversion van I can take her most places if need be.  There are times, however, that it is either inappropriate or physically impossible because of barriers to the building to take her with me.  If my husband has to work late, my older daughter is working or has a class, and my respite worker is unavailable I may have to turn down an evening or weekend invitation or cancel an appointment.  If our van breaks down, we are stuck, and Hillary goes nowhere except to school.  We have a patient lift in our house which has been wonderful, and if that ever broke we’d have a serious problem as we are unable to lift her without it.

I don’t mean to focus on all the negatives.  Hillary has been in public school in our town for 12 years.  She’s been in chorus, been a girl scout and in town parades.  We go shopping and to festivals, fairs, parties and places most families go.  We’ve learned, because of Hillary, to truly relax while we’re on vacation.  She cannot keep up with a frenetic pace, so vacations are the time we really slow down and just rest and unwind, visit one attraction a day, or just enjoy the town we’re vacationing in.

In closing, the past 19 years have been challenging, but at the end of the day, when she’s snuggled into her bed, Hillary is simply my baby and I am her mother.

Odd Things

So far this has been a year of odd things for me.  We’re beginning the 8^th month and I think I’d like to review.

-Going to the chiropractor.  I’ve done that a lot this year, and as grateful as I am for the help and healing I have received, it is an odd situation to be in.  There I am, lying on my stomach on a table with my face mashed into the paper covering the little cut out in the head rest talking to someone I can’t see while he manipulates my spine.  I wonder what it would be like to talk mostly to people’s backs all day?  One time my regular chiropractor was out and his associate treated me.  Wow!  I didn’t realize how much I trusted my doctor until that day, I couldn’t relax, his methods were different and by turns I felt like a rag doll and as if I were going to fall right off the table.

-My legs.  Well, once I had the cellulitis which delayed by a month the delivery of steroid injections for my back pain, all the doctors and nurses wanted to look at was my legs.  They still look at, touch, comment on and ask about them.  At one point I told the doctor he wasn’t allowed to look at them anymore.  Everyone there laughed; I’d just woken from anesthesia—but I was serious!  Enough already with my legs!

-Hillary throwing up on the dentist and the hygienist commenting on my sneakers immediately after—way to fill and awkward moment!  Speaking of my shoes, the chiropractor frequently comments on them.  It just occurs to me that medical people are spending an awful lot of time looking at the bottom of my extremities.

-Being greeted by people who know me and I have absolutely no idea who they are, even after they tell me.  Kind of awkward to have to tell them I truly have no idea who they are after they tell me that we went to the same high school.

-Physical therapy.  Seriously, I’ve been having some and every time I look around I think how odd it looks with all the assorted adults doing strange exercises—me balancing on a ball while raising opposite arm and leg in turn while a lady walks sideways on the treadmill and a man, wearing what looks like a foam bath mitt, stands facing the mirror wall slowly running his mitted hand up and down the mirror, while still another man lies on his back on a table doing the same motion I am on the ball.  If an alien saw us, I wonder what they would think.

-Me with a smart phone—‘nuff said!

-Me trying to figure out which button on the remote for the new van opens the door I want to open.  Seriously, I had every door opening and closing simultaneously in the parking lot of Hillary’s doctor’s office.

Ok, so those are just a few of the odd things that have been happening in my life this year.  I hope your odd things are few and far between.