Journey

Up-date on Meghan: We spent five days at Duke Hospital in the Epilepsy Medicine Unit. When we got home Friday afternoon after picking Louie from the vet and spending $200 to board him and running by Aldi’s to pick up items such as milk, bread, etc, I was so happy to be home. However, I didn’t realize how exhausted I was. I was unable to leave her room because I had to alert the technicians monitoring the video taping of her stay. This was a teamwork of nurses, doctors, neuro-technicians, and all professions who are part of the team. When we arrived home, I fell asleep on the couch, went to bed, got up on Sat. to nap most of day on couch. Of course, we had to get the glue and mess out of Meghan’s hair and treat the skin irritation from her reaction to tape from the electrodes (30) on her head. No seizures since she has been home, yet.

Dr. Radke released Meghan after necessary events were recorded in order to compile the report and findings of her seizure study. The findings will be presented to the Neurological/Epilepsy team which will make recommendations for further treatment in Meghan’s seizure control.  The seizure study has been helpful in my recognizing the extent of danger of the two types of seizures Meghan has. The risk is high with tonic and tonic clonic seizures which includes SUDEP (Sudden Unexpected Death in Epilepsy.) “SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150.”(www.epilepsy.com/learn/impact/mortality/sudep)

So now we wait…assimilate the knowledge and information that I have obtained during the seizure study.  And await the recommendations.  Then comes the heart-wrenching process of making a decision.  It is a feeling of Damocles sword…how do I know which is the best choice?   And it is not made easier that I am the only person who can make this decision.  I have spent 32 years protecting her.  I am her mother, and she is the love of my life.

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HEROES IN THE MIST

It is 11:02 pm and I finally get to sit down tonight.  I was to complete “An Intentional Act of Kindness” today in memory of Meaghan Gerringer’s 18th Birthday. I suppose I can say that maybe it was telling the EMS responders to my 911 call thank you would be sufficient. What do you think Meaghan? I promise next year when we are to complete an “Intentional Act of Kindness” in your memory, I will do one better.  However, we get a Double Act of Kindness when I witness the fire truck pull to my curb and EMS vehicle pull into my driveway on this mist, cloudy day, opening the back doors of the vehicle and coming toward us with a gurney and equipment. My thoughts are how quickly they move and I am so grateful to not be caring for Meghan alone.  I have some support this time. Crying and saying, I didn’t know who to call, and I am sorry,  the heroes assure me this is their job and they are here to help…

I am tired and it is a struggle  to wake Meghan most days…an ordeal sometimes so I was not a nice person today. I hate this part of the day.  I have my own version of autistic meltdown that probably a mother or father who has unconditional love for their child with autism truly understands.   However, I get over it, apologize to Meghan, tell her I had no right, and I continue to scream to myself what a piece of crap I am, and Meghan deserves better. I just need a break, not a few hours but a couple of days.  Somewhere quiet.

About 3 in the afternoon, just when I think I can watch Green Bay and Seahawks football game, Meghan wants to go outside and look for bugs in the yard. and although I try to talk her out of it, nope, no such luck.  So we get her brand new North Face coat on from her dad and that her sister,Lacy Margaret ordered for her for Christmas, put on her helmet, locate her purse that her late Grandmother gave her with her most precious dvds—Back to the Future Trilogies.   This is what people with autism do…they have precious possessions that mean EVERYTHING to them.  Don’t expect them to part with any item either, not one…unless you are prepared to fight in the World Wrestling Championship or play in the Super Bowl.  This, folks, is the equivalent of the football…protect the football, always.

While Meghan is walking around trees in front yard searching for ladybugs in the frozen tundra of the trees bark, I clean the junk out of the  piece of junk truck that I drive and dispose of it in a garbage can. I also carry clothing to donate which have been placed downstairs in the corner of the living room by the side door and put in the back of the truck.ife is done in steps and takes forever. This is because Meghan needs constant supervision due to her seizures. Meghan is heading towards me and I hopefully asks if she wants return inside since ladybugs aren’t co-operating. Instead, she crosses the driveway and starts toward the cedar shrub which hides our trash can where she can continue to look for a ladybug.  Just one, Lord, just one little ladybug and we can go inside so she can love one to death, literally.

Then I heard the familiar screeching sound coming from Meghan which warns me she is beginning a seizure. I turn toward Meghan to see her fall backwards like a chain-sawed tree hitting the earth, slamming her head on concrete and begins convulsing on the driveway. Not our lucky day, she is having a violent gran mal. And I have Louie on a leash, no phone and no VNS magnet.  I am trying to hold her head and back up above the driveway while she seizes and at the same time protect her limbs from the powerful jerking against the concrete. So powerful, that once she crushed a heel when she fell down the stairs while having a seizure. When the  convulsions end, her lips are blue,  her eyes are rolled back in her head and she is not breathing. You know, those few what seems like hours are the worst time for me because I don’t know if this will be SUDEP (Sudden Unexpected Death in Epilepsy)  that her neurologist says could happen…” If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150.”  Meghan is considered at risk for SUDEP.  She starts breathing and foaming at the mouth. Louie who is with me is barking and licking the foam off her face that comes from her mouth. This is what Louie does when she has her seizures. He is very protective of her and he has decided this is his job.  I am holding Meghan’s head up and trying to move her so fluids can drain from her mouth. This is difficult as she is dead weight and my back is hurting from the process. She is lying on the cold, damp driveway. I look around for a few seconds and no neighbors are around so I lay her head back down on driveway (no other choice) and I dash inside the house door to grab pillows, my cell phone and blankets off couches. Running back out, I place these items under her head and cover her. I am crying because I don’t know what the Hell to do.  I seem to do that a lot lately according to Meghan. We are outside on the damp, cold driveway and alone. Most times, we are in the house and I can put pillows under her head and body until she can recover enough for me to help her to the couch. But this isn’t an option on this surface.  No neighbors are outside, I have few friends with husbands, and her father rarely answers his phone or texts.  This is when I call 911 not knowing if they will come in this type of emergency.  A stupid thought, but stupid thoughts have become a part of me over the last few years.  Exhaustion does this to your brain.

The nice, kind, strong heroes place Meghan on the gurney, and into the house.  Oh what a miracle this is!  Meghan is starting to awake but is in a very discombobulated state. She is pulling at her clothing, her hands and at me as she is in a post seizure daze.  She doesn’t understand what I are saying to her. When the EMS heros check her vitals, and I answer questions about Meghan’s seizures and autism, they leave assuring me that I can call anytime she has a seizure to assist in moving her to a safe, more comfortable  place. Meghan sleeps 3 hours.   When she awakes she says her head hurts, and refuses to eat.  So thank you, Lord, for this experience.  I no longer have to be alone and can get help for Meghan.  And most importantly,  thank you, dear God for allowing Meghan to survive another seizure.

Meghan’s Meds and Life

When I think of medications, I think of all the successful treatments that stem from them. For example,lowering high blood pressure, preventing or stopping migraines, fighting depression, fighting infections, treatment for cancer and the list goes on forever.  It is, indeed, a wonderful thing that we are able to treat so many maladies and improve our lifes.  But on the other hand, there is a cost to medications…the side effects.

The treatment of Meghan’s seizures is a double edged sword which effects her every minute of every day.  Meghan wakes up most mornings and is so cheerful.  I can remember her being in her crib and jumping up and down when she awoke as I entered the room and saying, “it’s a beautiful day, it’s a beautiful day!”  She always had such a bright smile on her face and still does most days. I love that memory! Meghan takes 15 pills each day throughout the day.  These medications effect her from the time she gets up, and even when she falls asleep.  I feel we are playing Russian Roulette each day.

Most seizure drugs cause tiredness, foginess, dizziness, and sleepiness.  We start each morning with a huge breakfast to off-set the side effects.  Friends are amazed at what she eats in the mornings.  We have our “appetizers” which consist of dry cereal, yogurt, banana, and a glass of orange juice.  Then, we follow-up with the “main entree” of pancakes or waffles with blueberries and syrup, a side of bacon or sausage and eggs.  Then it is time for meds.  Meghan takes five pills in the morning and the fun begins…will she get sleepy, fall asleep, or only have tiredness  Sometimes, Meghan takes her meds between “appetizer and entree” and it is “Katie, bar the door.”  It impacts her to the point that she has a fork full of food and  falls asleep.

We never know how side effects will impact her but that isn’t the hard part.  It is going forward with the day.  Meghan wears a helmet when she gets up from the couch or bed to protect her head if she falls or have seizures. Most mornings, Meghan isn’t allowed to walk independently because she is unsteady or just plain staggering dizzy.  It is hard to plan her day if we are going out.  We never know whether she will be able to walk.  There have been times that I have slung her arm over my shoulder, wrapped my arm around her waist and walked her to the truck to go out.  Most appointments are scheduled at 1:00 or later, if possible. This is limiting to her life…she doesn’t have a normal life or even close.

The afternoons are the best time of the day for Meghan.  Her dizziness is mostly gone and she is able to walk and enjoy herself although some days she is extremely tired.  Today, was a great day in that she wanted to go to our neighbor’s pool.  She floated around on a mesh raft, and then looked for butterflies to capture.  When we got home, and we started getting out of our swimsuits, Meghan had a seizure.  My worst fear is a seizure in a pool so we were lucky.  I was tying her pants when she jerked back with a seizure.  She fell against the couch and was disoriented and laid there for a while.  This is the pattern we seem to follow when we go outside…it increases the risk of a seizure.  I have no idea why nor does the neurological team have an explanation.  I just had a funny feeling, a premonition that she was going to have a seizure this afternoon….strange isn’t it?

The early evening meds are less of an impact on her system although today, she was tired after taking her them…maybe the seizure this afternoon effected her more.  It saddens me to watch her sitting there staring, or feeling too tired to do anything. I feel helpless and frustrated.  Bed-time meds are easy, she falls asleep although I walk her to her bed.

I cannot describe how it feels to be constantly hypervigilant, on guard for a possible seizure or fall.  How to keep her safe and yet provide some activities outside the home that are meaningful.  I am thankful that Meghan loves workbooks with activities to occupy herself, reading and SpongeBob!  What would life be without Nick, Wheel of Fortune, and Jeopardy?!!

Why am I sharing this? Why am I feeling melancholy? It seems with the increase of fanatic political ads, disparaging comments about those who receive welfare or medicaid on Facebook, I grieve even more for her loss of a “normal” life. My daughter is real, has a face, heart and gives joy. It breaks my heart that people begrudge those who need help from the system…  My friends explain, “we are not saying that about Meghan!”  But I don’t know that, and what about other mothers of children with disabilities—-although they are adults—does it hurt any less? Do the comments make an exception for those “who really need it”  Does it make us feel any better about the attitude toward “welfare”?  Will there be a society who feels she is disposible or worth the costs of medications? My greatest fear is when I am no longer here to fight for her, who will protect her and love her?

Seizures and Return to Meghan Normal…

SEIZURES AND A RETURN TO “MEGHAN NORMAL”…

Individuals choose to write a blog for so, so many reasons.  Obviously as a means for self-expression, but for other motivations.  Some choose to write about their passions in religion, politics or beliefs.  Others may  write about a special occasion be it a birth, or marriage, a Holy Communion, Bar Mitzvah or other religious rites of passage.  I have considered a blog many times but wondered if maybe it was too self-absorbed…about me, me, me?  As time passes, I recognize I need an outlet, a way to express my feelings…be it positive, negative, angry, joy, or sadness.  I need for others to experience first-hand what it feels to be a part of Meghan’s life.

Today has been a difficult day….less than some but worse than others.  I was reminded recently that I have it better than some.  That is true, but does it hurt any less?  It is relative, isn’t it?  Does it hurt anyone less that they have lost this great standard of living and must watch their pennies?  I think not…OUR PAIN IS RELATIVE.

Meghan is  having a restful day and we haven’t had a seizure in four days.  Excellent~!!!  At 5 pm, as Meghan stood up from her couch, she came crashing forward to the floor,  hitting a trash can, desk chair, and a basket of books.  Another drop seizure.  She was discombobulated and speaking nonsense.  After her seizure, I drag her to the wall so she can sit up.  I wait for her to find the strength to assist her to the couch.  I change her panties and pants which she had soiled when she had a seizure, and then was able to settle her  on the couch. I observed and talked with Meghan until I felt comfortable enough to leave the room.  I am preparing her second favorite dinner, Shrimp Scampi with pasta, cleaning the shrimp when I hear a crash in the living room.  I find Meghan between the couch and ottoman having another seizure.  She is more non-sensical than her first seizure.  It is frightening because I always think—what if she doesn’t return to Meghan?  As a parent of a child with disability, and seizures, you always wonder if the possibility of brain damage changes her…not my Meghan.  Please, God, no.

She doesn’t have the energy to move past the floor where she seized.  She is incoherent…babbling and I don’t understand a word she is saying. I leave her to lie on the floor while adjusting the pillows to keep her as up-right as possible…this helps the recovery process to Meghan Normal.  Today,  recovery isn’t normal recovery.  I gave her 5:30 meds after her first seizures…to prevent another seizure.  Unfortunately, whatever chemistry makes the treatment of individuals with Autism different….makes it different tonight.  Meghan continues to lie prone…shivering like a fish thrown on a pier.  I am trying to settle her down, to comfort her and make it right again.  She is talking but just jabbering….I have no idea what she is saying.  As I get her into a semi-upright position, she begins vomiting and I am catching it from her mouth to her blanket.  When she pauses to the point, I can run to her bedroom and get her “barf” bag,  I put it to her face while she continues to vomit.  It is everywhere: on her face, hair, her shirt, bra and her blankets.  When she settles down, we begin moving toward the couch so she can be comfortable and up-right.  Mission accomplished…at least halfway…she is leaning on the arm of the couch and begins vomiting again.  I begin to remove her vomit-soaked bra and put a t-shirt on.  Meghan is obsessive and must wear a bra…always.  I get her a bra and her t-shirt.  Meghan  begins to settle down although I still cannot understand what she is saying…gibberish.  I feel frustrated.  Her legs continue to shake uncontrollably.  It is 9:10 pm and Meghan is sleeping…   She doesn’t want water or fluid which is another challenge for more problems.