What Is Aphasia?

     What is Aphasia? …….Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written. That is the technical definition that I found on the web……

     To me, Aphasia is so much more. Aphasia is heartbreaking, sad, frustrating, unfair, and hilarious all in one. Watching a loved one search desperately for simple words isn’t easy. Often times I help by finishing her sentences. (I have been doing that for my husband for years.)  I know I’m not “helping” when I do this but I can’t help myself. I hate to see the pain in my daughter’s eyes as she searches for such a simple word.

     I have Googled the word Aphasia so many times that I think I have worn out those letters on my keyboard. There is no quick fix for Aphasia, trust me I’ve looked. Two years ago my daughter was hit by a car and had a portion of her left temporal lobe removed. Aphasia didn’t rear its ugly head until 6 months after her accident.  It was always there, but in the beginning we had bigger hurdles to pass before we were even aware of the Aphasia. Hurdles like; brain swelling, emerging from a coma, learning to hold her head up, sit, walk, swallow etc. My daughter is tougher than the average bear. She has faced every obstacle like a true warrior.

     Aphasia seems to be the obstacle that is keeping her furthest from the finish line. Just like an episode of Ninja Warrior, she has barreled through so many tough obstacles on the course of life. Aphasia is similar to “The Flying Shelf Grab.” She is so close, she makes contact with the shelf, but she just can’t hold on. She is undoubtedly a crowd favorite and has an army of supporters.  She will get this….I just know it. In true warrior fashion she will regroup and work hard to regain what was lost.

     I have watched in awe from the sidelines as the child I gave birth to emerged as such a fighter. She started life with an APGAR score of 3 and proved herself as a fighter on her very first day of life.  As a mother I have learned to roll with the punches and laugh when things aren’t always so funny. In the beginning when she was regaining the ability to speak she never called me by the right name. I was often referred to as “grandma” or “Jason” or whatever garbled sound she was able to make. I have spent hours in doctor office waiting rooms being yelled at in incoherent speech due to my daughter’s frustration. Again, I had to look to my sense of humor to manage as a room full of patients stared and wondered what the hell was going on in the corner of the waiting room.

     Things are still not easy; having a loved one who doesn’t always understand simple words is tough. The brain is so complex that even the experts stand back and scratch their heads. I am committed to finding the absolute best when it comes to rehabilitation for my kid. The problem with Aphasia is that no two cases are alike. There is no cookie cutter plan of action. Rewiring ones brain isn’t easy, especially when the main pathway to language (left temporal lobe) is not just damaged it is gone. It is similar to crossing a bridge that is no longer there. I am confident that we will find a way to either back up and find an alternate route or rebuild a bridge that is stronger than the original one. It will take some time but we are in this for the long haul.

     Brain injuries and Aphasia don’t give a clear-cut diagnosis. Experts can only say that patients continue to improve years after the injury. Rewiring the brain takes time and patience. No two injuries are alike and no one knows what makes one patient improve while another does not. Often times I field questions from people like; will she ever be normal? What I want to say is “Will you always be rude and stupid?”  Instead, I bite my tongue, smile and say; we are hopeful, and please continue to pray for her recovery.  I then say a quick prayer that this person gets a terrible case of explosive diarrhea next time she wears her favorite white pants.

Spandex Sally

    

 Spandex Sally

      I am the furthest thing from a feminist. I have absolutely no problem letting a man take care of me. I do not shovel snow, cut grass or take the trash out.  Come to think of it, I don’t cook or clean too much either….  While I have been in Florida I am the head of the household and I’m not enjoying my new role. The week after I moved in I went to the leasing  office to request my mail key as it suggested in my welcome binder. The office manager introduced me to the maintenance man and let me know that he would make me a key and deliver it to my door. He is a young, fairly good-looking Hispanic man. His accent was so thick that when he introduced himself to me I didn’t catch his name. I decided to just call him “Eduardo.” It seemed to suit him.

     I have been committed to working on myself, (mind, body and spirit) while I am down here in Florida. I unsuccessfully tried that last time I was here. I ended up only going to church once, I ate way too many Mint Oreos and ran so much that instead of losing a few pounds I lost a few toenails and ended up with a horrible case of planter fasciitis. My tan was fabulous but the age spots were an unwelcome new addition to my forehead and stayed with me long after I lost my golden tan.  This year will be different.

     I bought a bike at Target because I still can’t run due to heel pain. Dave came to Florida to help me move in. Basically I just needed him to carry the heavy stuff…(this was way before Eduardo entered the picture.) I bought a bright purple Magna brand mountain bike complete with a floral basket, a padded seat and a fancy clip on water bottle holder thing. She is a real beauty; I refer to her as the purple princess. Back in the day I took a spinning class at the gym and my butt hurt for weeks. I never went back. I am kind of a baby when it comes to pain so not only did I buy a padded seat for the purple princess but I also went to a bike shop and spent an ungodly amount of money on figure flattering spandex padded bike shorts. I decided against the matching form fitting spandex top.

     Dave flew back home and it was just Lauren and I ready to work on another new beginning. I dropped her off at school on Monday and decided to go for a bike ride. I put on my new bike shorts along with a spots bra and tank top ready to ride. When I looked at myself in the mirror, I literarily laughed out loud. The fact that the price of my new shorts could have fed a family in a village somewhere in Ethiopia for 6 months was not lost on me. I decided to embrace my new look, despite how unforgiving it was. I’m sexy and I know it!

     I have never been athletic and I soon learned that answering a phone and riding a bike are tasks that should never be shared. After finding myself underneath the purple princess in a patch of grass near the bike trail I quickly jumped up and looked around to make sure there were no witnesses. Luckily I was all-alone on the bike trail…maybe my outfit scared everyone away. I put my apartment key in my little velcro floral basket in a zip lock baggie. After finishing my ride I parked my bike outside my door and looked for my key. Uhh Ohh, my key was gone. That meant I had to go to the office in my spandex bike shorts and see if they had a master key to let me in. Of course Eduardo was there to save the day and let me in. Crisis averted.

     Over the weekend I caught up on laundry. Somehow I blew a fuse and my washer and dryer quit working. I went to the fuse box and nothing looked out of the ordinary. I figured it was a simple fix but didn’t feel like dealing with it over the weekend. Fast forward to Monday and as I was walking across the parking lot towards my door Eduardo appeared out of nowhere. I told him about my issue with the washer and dryer and he came in and fixed them for me. It took him 30 seconds , it was a fuse problem as I suspected. At this point I’m beginning to suspect that Eduardo thinks I am making up excuses to lure him into my empty apartment.

     Later that afternoon I was at the mailbox trying to figure out how to get the tiny mailbox key to work and who do I see over my left shoulder as I am on my 4^th or 5^th attempt to open the mail box ? Of course, Eduardo himself. I said a quick prayer to God, “Oh dear God if you are really out there, for love of Pete, help me get this mailbox open.” I would have died if I had had to ask for help.

     Flashback to 1998 and Dave and I were living in Florissant. A single mom with a teenage son moved in the rental house next door. She was very friendly and took a liking to Dave. She seemed to always need help with something. I was never the jealous type but it was starting to really grind on my nerves every time she showed up on my front porch and would say, “Dave, can you help me with……”  Her name was Beth but I affectionately referred to her (behind her back of course) as “Braless Beth” I mean seriously, doesn’t that hurt? Those things could use some support. My favorite braless Beth memory was the time she came over when Dave and I were fighting. I can’t remember what it was about but I’m sure it was nothing I did wrong, he probably did something stupid, (per usual). Anyhooo, she came over because she couldn’t find her can opener and needed help opening her off-brand stewed tomatoes. Who the hell eats that?? I was sitting at the dining room table helping one of the kids with homework, Braless Beth waited in the foyer and Dave was in the kitchen trying desperately to open the can. Dave has many talents but lets be honest, none of them are in the kitchen. He struggles with the microwave, and has no clue how to preheat an oven. Using a can opener is like asking him to perform brain surgery. I watched for a while stifling my giggles, finally he had to turn to me and ask for help. (I win)

     Beth didn’t live next door for long, she confided in me one day that she couldn’t afford the house and that she would be moving soon. She also shared with me that even though she hadn’t been formally diagnosed that she had some psychic gifts and she just knew that she was slowly dying. Her breast implants were leaking silicone all throughout her body and she felt in her heart that she should start getting her affairs in order because the end was near. I felt for Beth and suggested that maybe she should see a doctor??? And buy a good bra…..that could be the problem.

     Standing at that mailbox it dawned on me….I am Braless Beth. OMG Eduardo probably calls me Spandex Sally. Since that day at the mailbox, I spend my time trying to avoid Eduardo. Damn if that boy isn’t outside every time I walk out my door. I pulled up to my apartment the other day and was on the phone with Kelsey, she was trying to get off the phone. I told her she needed to keep talking to me until I was safely inside my apartment. I was desperately trying to avoid eye contact with Eduardo. Seriously Eduardo, don’t you have somewhere that you need to be?

     It has been raining all week here in Florida and that means less time with the purple princess and more time at the mall. Yesterday I saw a fabulous  spandex leopard print jumpsuit in the window of Fredricks of Hollywood. I decided to buy it and wear it next time I blow a fuse or need something fixed. I think it would look great with my fuzzy stilletos .

     I called Dave and let him know that I purchased a flight for him to come to Lauren’s graduation from the Aphasia Center. I told him that I spent the money because I just missed him so much. Lets be real here for a minute….I need someone to carry my luggage.

Clearing My Head.....What a Task!

 Too much Time Alone To Think

     I was always the type of person that would never go to the movies or a restaurant alone. Times when I was alone (rarely) and hungry I would go to a drive thru, park and eat in my car so people wouldn’t think I was a lonely girl with no friends.  Whenever I saw someone alone I always had a whole scenario in my head that I’m sure was right on point. For instance, an elderly man eating alone is surely newly widowed and can’t bear to eat alone in his empty house another night. A good-looking businessman having dinner alone without a wedding ring is obviously alone because he cheated on his wife and she took him to the cleaners, as she should have. Am I the only one crazy enough to think I can read a person just because they are having a meal alone? I realize I’m a little crazy but I still continue this fun little game in my head.

     Today I spent the day alone at the beach. As I was setting up my beach chair (all alone) I couldn’t help but laugh at myself while wondering what all the groups of people thought “my story” was as I was setting up my chair.  My plan was to run on the beach as soon as I got there then read in my beach chair until it was time to go get Lauren. I run with my swimming suit under my running clothes so I can jump in the ocean when I finish running to cool off. I drank too much coffee on the way to the beach and quickly realized running on the beach wouldn’t be the brightest idea for this mom of 7 with a weak bladder. I quickly stripped down to my “mom” tankini and took a quick dip in the ocean to cool off . Okay really I just had to pee. I dried off and put my running clothes back on over my suit. 

     My plan was to run the first mile then walk/run the rest of the way. I made it to .94 before I decided I was done running and that I actually hate everything about running. A little voice inside my head could hear Dave’s voice saying, “Come on Punkin, you can do it, .6 more….Murphys Don’t Quit!” Only my voice was much stronger in my head saying, “Screw you Dave…..I’m not a freaking Murphy, I married into this name and I am stopping at .94. Then I laughed to myself and skipped instead of ran the last .6. Despite the horrendous run, I had a nice quiet peaceful morning and ended up walking 5 more miles. I spent the time alone with my thoughts and was finally able to clear my head after a really rough weekend. Not only did I end up with a clear head, I also ended up with awful chaffing on my thighs. My shorts were wet from putting them on top of a wet suit and ….well basically my thighs are just too fat. Whatever. I have so many other qualities; I never wanted to be a leg model anyway.

     As I was walking I was thinking about life and how much of our lives are about following your dreams and how much are about following your circumstances. When I was a kid my dream was to own a dance studio and be a tap dance teacher. Clearly I missed the ambition gene but a dream is a dream I guess. My dream kind of fizzled and lost steam when my dance classes were on Thursday night. We all know Thursdays are must see TV. I preferred skipping dance class to watch an episode of Cheers. That dream quickly went up in smoke when I quit dance when I was 13. I don’t remember really having many other aspirations. 

     Walking alone on that crowded beach full of families enjoying their vacations I wondered; How many of these people have followed their dreams and how many have followed their circumstances. Is there a difference?  How many will look back to this time in their lives and wish they could freeze time to this exact moment? Watching their children build sandcastles and play in the ocean. Something so simple, yet so completely magical, only they don’t even realize it yet.

     One of my past biggest fears was always that Lauren would have another seizure. Up until last week she had had 5 seizures in a 2-year period. They are super scary and I have witnessed 4 of them.  Last week she had 6 seizures in just 3 days time; 4 of them on Saturday. Looking back I am pretty proud of the way I handled all of her seizures. I remained calm, had her medication at my fingertips, and was able to take charge of her care to get her back to baseline and back on the medications she needs despite what her doctor had wanted to try. Obviously this little experiment was an epic fail and her new medication was not doing the trick.  I’m thinking of getting myself a T- Shirt that says “Seizure Slayer.”

     Being the primary caregiver for someone with a TBI (Traumatic Brain Injury) is the hardest thing I have ever done. It is also the most rewarding thing I have ever done. Throughout this journey many obstacles have been thrown my way.  I keep telling myself; “If you can dodge a wrench, you can dodge a ball.”  I have dodged so many damn wrenches that I have lost count….. Guess what?….I am becoming one bad ass wrench dodger. 

     I received an email this week confirming Lauren’s admit date for QLI in Omaha. She will move into her new temporary home on 8-24. I am in the process of filling out my Apartment application and it is super scary to again be away from my loving family for a time period that is a minimum of 3 months but could be up to 6  months or even longer.  The epiphany that I had today on my walk on the beach was that last weekend was awful to say the least but it was also just more proof that Murphys are super tough and can handle anything. Well maybe not anything….running is the exception…running is just stupid!!!!

     Back at my beach chair I peacefully settled in with my book and watched all the families. I fondly thought of all of our past vacations building sandcastles, swimming and baking Shannon. Then I giggled as I thought to myself, I wonder if these people have had enough time to figure out my story. Clearly I was alone for a reason, I must be a dance studio owner alone on vacation celebrating another successful dance recital. Nah…I am a weird loner with a weak bladder who has 0 friends and would prefer to read alone in a beach chair than interact with the general public…..If only they knew!!

     Bring on Omaha…We got this!

Sorry, I Don't Have Time For A Therapist .....This Is Cheaper.

     I have always been the type of mom that was great with bee stings and skinned knees. I could make a fabulous paste with baking soda and toothpaste to put on a bee sting and I always had a kitchen cabinet stocked full of Little Mermaid band-aids just in case of an emergency. I remember once after one of Erin’s surgeries, at St. Louis Childrens Hospital, she had shared a room with a kid with chronic issues. When the doctors came in the room for a history, her mother rattled off a long list of medications and side effects as well as past admissions. As the mother was verbally going down the painfully long list of awful things that her daughter had been dealing with,  I couldn’t help but feel a little guilty. I was feeling like I was carrying such a big burden watching my toddler in pain when this mother seemed to never catch a break. Dave and I looked at each other as we sat shocked on the other side of the privacy curtain and mentally thanked our lucky stars that we were not “that mother”. Our daughter was only staying because anesthesia made her throw up a gazillion times no matter what anti nausea drugs they gave her.

    Fast forward to present day and today was just plain shitty. Driving home from the Aphasia Center today I looked over and saw the back of Lauren’s head. I immediately knew something was wrong. I could tell she wasn’t just looking out the window, her head was turned too much to the right, it was actually turned so much it was almost facing the head rest behind her. I called her name several times and unsuccessfully tried to nudge her head back towards the center. I was driving at the time so it wasn’t easy. I pulled over in front of a stop sign, I didn’t care if I was blocking traffic, I have a rental car and have no clue where the hazards button is.  Luckily a policeman was at the stop sign going the opposite way. I rolled down the window stuck out my arm and motioned him over. When he pulled up I quickly told him that she was seizing and turned my attention back to her.

    This seizure was different; her beautiful face was still contorted like all the seizures in the past but the convulsions seemed less severe. I looked at the clock as soon as I noticed her head turned, from start to finish it was only about 2 minutes. Of her 6 seizures since the accident this was the shortest. She did foam at the mouth a bit and her lips and area around her mouth turned a bluish color. (I think my heart may have stopped for a bit) That was a symptom that I hadn’t noticed happening before.  I have medicine to give her that I ALWAYS carry with me that will prevent her from having seizures back to back. I asked the policeman if he had any water so I could give her the medicine.  He let me know that they have to wait for medical professionals. I looked down, and luckily Lauren never goes anywhere without her lemon flavored Vitamin Water. (I wasn’t waiting) She was lethargic but responding, she was able to swallow the pill without issue.  I asked her to take out her invisalign, I didn’t want her to choke on them if she had another seizure. She was worried about finding the case before she took them out. At that point I was pretty confident that her cognition was good. The ambulance showed up and I started making calls to her epilepsy specialist’s office. We just weaned her off a medication so I was kind of expecting this. As crappy as it is, it is part of our world now.

     While in the back of the ambulance they were taking her vitals and checking her blood sugar I was rattling off her lengthy history and hospitalizations, medication lists and past medications and past seizures etc.  Then it hit me, Oh my God, I AM “That Mother.”  It is an exclusive club that no one wants to be a part of. No amount of Little Mermaid band-aids or baking soda paste can fix this. This is big time boo boos and many times I would like to run away, but I can’t.  I don’t have to like my set of circumstances but I do have to look for the positive because, as in everything in life, there is always something positive. Sometimes my take away can be the simple fact that I have mastered silent crying. Often times I can be grocery shopping or sitting on a plane or even watching TV and slow tears are rolling down my face. Not a soul even notices, this is something I have perfected in the last two years. But on the flip side, I can still laugh and I laugh a hell of a lot more than I cry. 

      I even laughed tonight. After dinner, (2 hours post seizure) Lauren got up and started cleaning the kitchen. I sent a pic of her loading the dishwasher in a group text to reassure the family that she was back to her old self. When she saw the pic (a while later), we were sitting on the couch watching TV. She said, "Oh My God my ass is huge." then she zipped up the bag of chocolate covered pretzels and put them in the kitchen.

    Everything happened pretty quickly today and I am pretty proud of how I handled everything. Unfortunately I am becoming an expert. This seizure didn’t seem as bad as the others. Maybe it was milder, or maybe I am just getting used to them? The frustrating part for me is getting a specialist to call me back. I understand that they see seizures daily but come on….is it really Okay to tell a mom, “the doctor will call you back tonight or tomorrow morning by the very latest? Seriously?? 

     This isn’t the first time I have had this issue, I even looked at switching doctors once when a different doc was slow at returning calls. My options were finding a less knowledgeable doctor that calls me back or going to a top rated doc that returns calls when he gets a spare minute. Sometimes being the one in charge of medical decisions, medications and doctor appointments is just too much pressure. For now, I wait….and watch her like a hawk. It's 11:00 pm and I'm still waiting for that call. This is a new doctor and I have yet to get out my bear claws, the others have seen the claws and have learned to return my calls quickly. No worries, this one will learn as well. I will spend the night watching Lauren sleep and carefully and meticulously, sharpening my well manicured claws.

     I was walking through Target this week and I had an epiphany...I know you are all dying to hear what brilliant epiphany I came up with? Okay, maybe it wasn't and actual epiphany but more like a thought. I was walking past the little girls department and the clothes were so cute ,I thought  to myself that I wish that I would have had the money to buy whatever caught my eye when my girls were little. I used to get bags of hand me downs from friends and friends of friends and it was awesome but I always wished I could afford more.Then I remembered the lyrics to that Kenny Loggins song that I used to sing all the time back in the day;

And even though we ain't got money,
I'm so in love with you, honey,
And everything will bring a chain of love.

     Dave and I laugh looking back, we didn't plan all this chaos. We have heard it all, "You know what causes that?" "Maybe you should get the TV fixed?" Ever think about getting cable?" I am so thankful we didn't figure out what caused that, we didn't fix the TV and we didn't get cable. I may not have been able to afford cute Target outfits for my girls  (luckily both grandmas liked to shop) but somehow we raised some pretty amazing kids.

     Besides, if we had money and would have started a college fund, I guarantee none of these kids would have went to college. It's Murphy's law, didn't I marry a Murphy? One of Dave's favorite things he likes to tell me is, "Ya know Col, you don't have to spend money every single day." I always laugh and say, "Don't be silly honey, of course I do.  I have to make up for the '90's when I was busy spitting out your precious offspring every other year instead of shopping."

      Building a family is tough, I always feel like I am doing it wrong. Did I give my kids enough love, attention, time, things, nutrition, sunscreen (sorry Shannon), the list goes on and on. The short answer is probably no AND yes. Could I have done better? I'm sure I could have; could I have done worse? Most definitely.

     Lucky for me, I didn't know how hard of a job being a parent was going to be. If I would have known then what I know now, I would have most likely spent the 90's on three different forms of birth control as well as abstinence just to be on the safe side. I used to have a plaque hanging in my kitchen that said, "Raising kids is like being pecked by a chicken." That was my favorite quote for a while until I came across the quote, "Raising teenagers is like trying to nail jelly to a tree." I never could bring myself to hang that one on the wall. I was too busy crying!

     I still have two teenagers to go and I'm terrified. So far so good. These two have been through so much. It's hard enough to be a kid these days but throw in a sister with a super sad set of circumstances and a mom who isn't even in the same state and it's sink or swim. I hope and pray that I have given them enough to not only swim but to fly. Lucky for them they have an awesome dad and some pretty terrific siblings who are dealing with the same issues and sadness.

     For the first half of my married life I spent so much time wishing I had more. More designer clothes, a nicer car, a bigger house, a bigger paycheck, etc. Through the years things got better and I actually got all of those things that I longed for. I now have a bigger house, designer clothes, a bigger bank account etc. But the jokes on me....I always had everything I needed. It wasn't about what I didn't have it was always what I DID have.  I was too stupid to see that. I had a husband who adored me and worked his ass off going to school and work so he could give me everything that I always wanted. But the thing is, I already had everything I needed. 

     What I wouldn't give to be living back in that tiny house in Overland with my piles of laundry, dirty dishes, (no dishwasher) dirty diapers, fingerprinted walls and sticky kitchen table. Who would have thought that feeling like I was being pecked by a chicken could be so absolutely wonderful?