Update post Summer 2014

This past weekend I celebrated my 23rd birthday, the first birthday in 2 years that I haven’t

Sherrin wearing make per her request

Sherrin wearing make per her request

spent in a hospital. I am officially older than Sherrin was when her accident happened. It’s funny because growing up I always thought Sherrin was so mature and older beyond her years. She was 22 when her life changed and became a new person. I still feel like I’m a child and am nowhere near hitting so many milestones in life even though I’m technically older than the sister that I used to know. She was 22 when the very idea of hitting those milestones were ripped away from her future and here I am surpassing her. I feel guilty. I know there’s nothing I can do to help it. I feel that the Sherrin I had known my whole life died when she was 22 and then I was given a new sister for ages 22 and beyond- a new sister that has to fight to move her right hand and is too fragile to be in the sun

Dad and Sher hanging on the couch

Dad and Sher hanging on the couch, twins!

light for more than a few minutes. It’s a very humbling thought.

Ever since I moved back in with my parents at the end of July, I have been able to spend much more time with Sherrin- which is always amazing! Commuting back to DC every day for my job is exhausting and definitely takes a toll on my sanity, but it is very well worth it to see Sherrin every day (and save money!). Sherrin and I are extremely close and seeing her face light up when I walk in after coming a long day makes all of my stress from commuting go away. She has the most gorgeous smile and her hair is growing back curlier and blonder than ever. Even though I can’t help out all day every day, my parents are definitely enjoying me being able to give Sherrin baths and feeding her when I can so they can rest.

Sherrin’s days normally revolve around therapy, stretching, and playing on her iPad. I have got to say, Sherrin is pretty damn good at solitaire now. She can win a game literally in 5 minutes. She used to play a new game every time she would be stumped, but I convinced her to keep trying. Now, she’s basically a champion. She also uses the iPad to type out her thoughts that she has trouble saying. Sometimes she’ll write paragraphs explaining things she wants or that she is thankful for my parents. Occasionally, she’ll even write, “I am so sorry to make you take care of me.” This kills me, but it also makes me happy. Sherrin is now able to recognize what has happened to her, something she couldn’t understand even a few months ago.

Physically, some bad news coupled with good. Sherrin has a dark abrasion on her left

Abrasion with the swelling

Abrasion with the swelling

ankle. It began as a small sore from one of her leg braces but the continued rubbing caused it to blister and infect the surrounding area. Sherrin’s ankle began to swell, from which had originally thought being from a sprain, but it ended up being caused from the sore. It has since gone down with icing and gauze bandages. Her styes in her eyes (yes, the same ones from earlier this year- it is a rare type of stye that tends to stay with a person for the rest of their lives) have gone to being unnoticeable and less irritating. Sherrin is also much physically stronger. My parents and I have stopped using a sling and Hoyer lift to move Sherrin from bed to chair, chair to couch/bed and have begun lifting her ourselves. We can do this by moving Sherrin to the edge of her bed so her feet are dangling and asking her to put her arms around our backs (only the left arm moves). We then lift and move her to where she needs to go. Sherrin is actually able to push through her legs a bit so that she can support herself and not be complete dead weight. When I get ready to transfer her I ask her, “Okay,

Sherrin pulling herself up!

Sherrin pulling herself up!

Sherrin, stand up and get in your chair,” AND SHE TRIES. She pulls herself up as much as she can and tries with all of her might to move her legs. Not saying that she can do this because I’m around more often, but I am saying she couldn’t do this before I moved back home. I figure that if I continue this every time I transfer her she will eventually be able to do it herself one day.

Currently, Sherrin is doing inpatient at Mount Vernon Hospital in Alexandria, Virginia for 1-2 weeks, which began yesterday. Don’t worry, it’s for all things good. She is getting a new physiatrist (a doctor that studies the way different parts of your work together and not necessarily one particular area like a neurologist or cardiologist) who wants to evaluate her fully before she begins creating orders. My mom is staying at the hospital with

Photo taken by Sherrin, note the toes!

Photo taken by Sherrin, note the toes!

Sherrin while my dad is working in Dubai. I plan on visiting several times and staying overnight so my mom can go home and rest for a bit, just a very difficult drive since the hospital is about an hour away (more commuting –yay).

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Right from Wrong

As some of you may have noticed, I had to delete my last post written roughly month ago regarding a scandal with Sherrin’s healthcare. Though I was angry to take the post down as it made many people care about my sister and reach out to my family, the costs outweighed the benefits.

10509733_474805029288967_7726405425232481752_nThat being said, I’ve realized that my lack of posting and updating about Sherrin is directly correlated with the amount of visitor Sherrin receives, which is exactly why I started this blog. If I don’t keep Sherrin relevant than nobody will.

She has not had a friend visit since her birthday, which was in mid April. I know I repeat this often on this blog but if you consider yourself someone that cares about Sherrin, it is your duty to prove that to her. I don’t care if you were her friend, acquaintance, or only know me; we want you to visit.

Sherrin’s journey is lonely. She needs you to be there for her to want to try to get better. And for all of the people that are a part of my family or were a friend of Sherrin’s and have not visited my sister once in the past two years… shame on you. I’ve run into multiple people throughout the years who tell me that they want to visit Sherrin but are too afraid of what they might see and it would be too hard on them. I laugh at people like this. It’s too hard on you? Oh, I’m sorry, you’re only plagued by the tragedy that you see via Facebook pictures but you don’t actually have to live it, and you expect me to sympathize with you? Give me a break.

Excuse my rant. But not really. Some people really should be ashamed of themselves.

On the positive side, we have not gone backwards in Sherrin’s progress in the past few months. She received an extra dosage of Baclofen about a month ago that has caused her mood to sore. Whenever I’m around her, I can usually catch her smiling at me or repeating, “I love you.” I’ve been working with her to improve her typing skills as an alternative form of communication and she really seems to enjoy it. I pull up a Word Document and ask her to type various things such as her mood, favorite food, my middle name, mom’s maiden name, the day of the week, or math problems. She keeps the laptop on a small table in front of her and types with her index finger on her left hand.

As I have mentioned before, Sherrin struggles with her right side. When she had her accident, she had more damage on the left side of her brain (which controls the right side of the body) than her right. I imagine this happened because she smacked her left side of her head on her driver’s seat window but there’s no way to know for sure. As a result, Sherrin can’t really move her right arm, hand, or leg as well as her left. She holds her right hand in a fist the majority of the time so my parents and I have been stretching those fingers multiple times a day. I pull each finger apart and make small circles for several minutes and then ask her to stretch her fingers on her own and then make a fist. I repeat this for 15 minutes, and it works! Having that flexibility in her fingers allows her to have more control and actually respond to my commands.

However, the days that her hand isn’t moving so great and I ask her to do something with her

I've been getting Sherrin to work on her typing, damn near perfect!

I’ve been getting Sherrin to work on her typing, damn near perfect!

right hand, she picks up her right hand with her left to assist. She will normally ask me why her right side doesn’t work and that’s when I have to explain the whole accident, TBI, coma, and recovery all over again. She doesn’t really get sad when I explain everything… she usually says, “Oh, wow,” or, “I don’t remember that.”

This progress gives me peace. Or at least more peace than I’ve had in the past two years. When I think of where I was mentally a year and a half ago compared to how I am now, I can’t believe how different I am. I used to lash out at people or insult others in order to make myself think that my life wasn’t totally horrible and that other people had it worse. I didn’t mean to do those things because I would consider myself a generally nice person, but it was the only way I could justify that my life wasn’t the worst out there. But since Sherrin has improved and as having a sibling living with a TBI has become more “normal,” I’ve found more reasons to like myself. Shout out to all of those that have stuck it out with me. I promise it’s going uphill from here.

I want to give a personal shout out to my loving boyfriend of almost 3 years, Sam. Sam has

Sam and Sherrin

Sam and Sherrin

been there for my family and me from the beginning. He has been my support system through everything and I truly don’t think I would have the strength to make it through the initial days of Sherrin’s injury and graduate from college if it weren’t for him. Sam and I were only dating for a few months when Sherrin’s accident happened and he stuck it out without flinching. Thank you for helping with Sherrin’s stretching, running errands for my parents, and always saying the right thing to lighten the mood when everything seems so dark. I love you babe.

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It’s Been 2 Years and I’ve Learned More than in My Entire Life

May 13, 2014 marks the two year anniversary of the accident. This day will always be recognized as a tragedy for me and will be marked as the day that changed my entire life. Through these two years, I’ve learned more about myself than I ever have during my 22 years of life. Upon this acknowledgement, I’ve learned the dynamics of what it is like to have a handicapped sibling and all of the pain and suffering that comes with it.

In the era in which BuzzFeed and numbered lists being a hot commodity on social media, I’ve decided to compile the 11 most important things I’ve learned since I have had a handicapped sibling. I’ve met hundreds of people over the past two years that have gone through similar experiences with a family member and can relate to me unlike anyone else. This is for them. Enjoy!

 11 Things You Learn From Having a Handicapped Sibling

1. You have the hardest working parents out there.

Being a parent is hard for anyone, but having a handicapped child in the mix makes things even more stressful. My dad works a 50 hour/week job and goes without very little sleep to take care of Sherrin, My mom is constantly working on her therapy and is too exhausted to do anything else.  The obstacles they have to overcome everyday can be unbearable, but miraculously, they’re able to get through it. Thank them for that.

photo 2

2. You’re going to feel sorry for yourself a lot… and that’s okay.

Just don’t let it last forever. Throwing yourself a pity party everyday is exhausting and will draw people away from you when you need them the most.

3. There’s added pressure on you.

Since your sibling may not be able to attend school or get a job, there’s more pressure on you to succeed. For me, I’m pressured to do even better in school and have an exuberant amount of job opportunities since my sibling can’t do those things. Don’t take this as an anchor; take it as inspiration. I do what I do for her. Sherrin is my motivation.

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4. Strangers are going to stare.

Walking with your handicapped sibling down the street or in a parking lot since they are wheelchair/crutches/cane bound causes people to stare longer than they realize. They’re going to think, “Oh, what a shame for that family.” You can’t stop what people think but you can do is hold your head high and show strength.

5. You realize how important your sibling is to you.

Whether your sibling was born with their disability or it came later in life, you understand how important this person is to you very early on in the course of the disability. I’ve become the most territorial person to Sherrin through her injury. A loser talks smack about her? I rip them to shreds.

photo 3

6. You have never realized how important you are to them.

Knowing that you are critical to someone else’s life is an odd feeling. I was only 20 years old when Sherrin’s brain injury occurred. I had to grow up really fast and make my family the number one priority, something that not all 20 year olds have to do. My presence is crucial to her progress and a huge help to my parents’ sanity.

7. Your parents are stressed a lot.

Can you blame them? Look at what they have to deal with everyday versus parents that don’t have a handicapped child. Look at the stress you feel from your family’s situation and multiply that by a thousand.

IMG_5553

8. There are those people that will never understand no matter how hard you try to make them.

I’ve had some people that I consider close friends ask some of the most ignorant questions. I’ve had people ask me if Sherrin would get back together with her ex boyfriend or why we don’t put make up on her. Those are the types of people that are so distant from the reality of tragedy that they see a distorted vision of what is really happening. You have to ignore them.

9. Don’t be afraid to go to therapy.

It saved me.

photo 1

10. The world is cruel and bad things happen to good people.

This isn’t yours or your sibling’s fault. There is no rhyme or reason on why tragedy happens or why some people are dealt a crap hand of cards. You have no choice on fate; you just have to accept it and move forward.

11. At the end of the day, all you care about is their happiness. 

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Birthdays and Demons

Sherrin will officially be a 24 year old tomorrow!  

I want to wish my amazing sister the happiest birthday possible and acknowledge her amazing strength as a human being. You are my hero, sissy, and I am so thankful that is the first birthday any person in our family has spent somewhere other than a hospital in two years… even happier that it’s yours that we get to celebrate!

If you are feeling generous and want to give Sherrin a meaningful birthday present, please donate to her PayPal account that will go towards her care that is paid out of pocket. Any small amount truly helps!

Sherrin was lucky enough to have some amazing friends drop by these past few days to wish a

Steve, Chryssi, Sherrin, and Mikey G celebrating Sherrin's 24th birthday!

Steve, Chryssi, Sherrin, and Mikey G celebrating Sherrin’s 24th birthday!

happy early birthday. I want to thank Cat, Chryssi, Steve, and Mikey G for being Sherrin’s number one fans and always finding the time to see her for important occasions. It truly means so much that friends like you all still care so deeply about my sister. Thank you from the bottom of my heart.

On an emotional standpoint, my morale about my family’s situation has gone down lately. It’s not always, my depression comes in waves, but when everything catches up to me, I feel like I can’t breathe.

Sometimes I get really frustrated with Sherrin. How I watch my parents run themselves into the ground as her caregivers… how my mom gets upset with our house not being handicapped friendly… and mostly because I don’t have the same big sister anymore.

I recently watched a video regarding traumatic brain injury victims. It was a mother who had twins around 8 years old who both suffered from TBIs. She explained that though she still had her children, who were still quite alive, she mourned the loss of her old kids. She had new kids now; ones that would be in wheelchairs, have weekly doctors’ appointments, and have whole new personalities. It was as though someone switched out her children with that looked and sounded like them but were completely different in every other matter.

I started tearing up as I watched this video. I knew exactly what this mother was talking about. I have my sister, the very same person that I had known since the day I was born, but she is a new sister. She is no longer the person that tells me about her crazy weekend at a music festival or about her latest love life drama. That sister is gone.

It’s so frustrating and drives me crazy. And the even harder part of it is that it’s my instinct to go to my sister, express my frustration, and listen to her advice, which is what I have done my whole life up until May 13, 2012… but I can’t.

Sherrin's laugh :)

Sherrin’s laugh 🙂

It’s upsetting but like I’ve always said, I’ll take any form of Sherrin that I can rather than not having her at all. This is unconditional love, but god is it aggravating love.

I had a mental breakdown last week. Not only am I so very overwhelmed with graduating from college next month, but my parents delivered me some not so good news with Sherrin. She had some X-rays done over the majority of her body and the doctors noticed something that I had never even considered. Sherrin’s ankle and pelvic bones have hardly any mass in them anymore- they are essentially hollow- from lack of usage. When you don’t use a body part after a long period of time, it stops functioning. These bones are so fragile that almost anything could cause a fracture. The hardest part of hearing this news is that I know that it can’t be easily reversed. I don’t want her to be this weak. It scares the living hell out of me. What if she fell during therapy one day? What if she was in another car accident? What if she accidentally kicks a wall? A fracture would slow her down and require so much more medicine to repair. What if that medicine causes more seizures or has some other odd side effect? Anything that we put into her body causes a chain reaction that can offset anything…

When I got this news, it reminded me that Sherrin is the priority. Who cares about my last semester of college and going out to bars? None of that matters in the grand scheme of things. I care so much more about my sister’s progress than I do about my social life. When I’m at Sherrin’s therapy, she does better. When I’m at home quietly watching TV with her, she’s happier. I am vital to her progress. This is where my priority lies; everything else is just fluff.

The reality of our lives is definitely hard to take. I don’t cry as often as I used to, I thank therapy sessions that I used to attend as well as good old-fashioned time, but when I do cry… it’s a lot. I find myself alone when I try to cope with everything, but I broke down in front of my mom the other day. I try not to, seeing as though everything is so much more heartbreaking from my parents’ perspectives, but I can’t hold everything in all of the time.

I sobbed for a while and just kept saying that none of this is fair and that we don’t deserve this life. Trying not to breakdown herself, my mom gave me the biggest realization that I’ve had during this entire experience: Sherrin is the most peaceful she has ever been in her entire life.

You see, Sherrin had a lot of demons her whole life that she had to battle. She struggled with intense depression since around the age of 13 and was also diagnosed with ADHD and bipolar. Lack of better judgment then led her to a slew of bad boyfriends, most of which were mentally abusive. Sherrin was a tortured soul who never felt truly happy. Sherrin was just barely on the road to success and happiness right when the accident happened, but she wasn’t very far on the journey.

Now, Sherrin’s memory is hazy and her personality is wildly different. She only recognizes things that are happening in the moment. She finds instant gratification through successful therapy and visits from friends, which makes her happy. She doesn’t have screaming, crying fits like she did her whole life prior to the accident. Though this situation is nowhere ideal and morally correct, but the ONLY positive I have seen through the tragedy is that those demons that have haunted Sherrin for over a decade are now gone.

My mom really knows how to look at the bright side of things even if the entire world seems hopeless and dark. I am so thankful for such amazing parents that can find positivity through the tragedy.

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Styes and Sister Dynamics

I apologize immensely for the long delay!

As for a follow up to the Kelly and Mike Show contest, “Unstoppable Moms,” we never heard anything back from the show officials, so I am presuming that my mom wasn’t selected. It’s a bummer, but I’m sure whoever was selected is an amazing mom in her own entity. Thank you all for all of the support!

Let’s see… I few things have happened with Sherrin this past month.

The most concerning issue has been Sherrin’s eye. In about the big beginning of February, Sherrin had a very large stye on her left upper eyelid. I had never seen such a swollen eyelid before. It was probably about a centimeter swollen (and if you think of that on your eyelid, I’m sure it is extremely uncomfortable), but it didn’t seem to bother Sherrin that much. She got it originally when she went to a doctor’s visit. Sherrin’s immune system is so weak and fragile that almost every time she leaves the house, she catches something, like bug bites, styes, and small rashes. It isn’t really something we can avoid though, so my

Profile view of styes on left eye.

Profile view of styes on left eye.

parents just try to deal with the repercussions when they come along.

After a few days with the stye, it popped, but then began to form on the lower eyelid. The second stye grew even bigger than the first, and then that one popped. Just when it started getting better, a third one on her right eye began to form. We think that this is caused from washing Sherrin’s face with a washcloth and the bacteria spreading to the next eye. As of right now, none of the styes have fully healed, resulting in 4 styes (2 in each eye). I’m sure its crazy uncomfortable for Sherrin, but she never really seems to complain about it, which makes it not a dire issue. My parents have been taking Sherrin to the doctor to examine it recently, but every health professional just keeps saying it looks like its clearing up.

Styes in both eyes

Styes in both eyes

My parents finally set up Sherrin’s outpatient therapy!! For the past two months since Sherrin’s been home, Sherrin has been getting her therapy sessions done inside the house. After numerous battles with the insurance company and finding adequate care that would admit Sherrin, she is finally starting sessions at the Loudoun Hospital. She goes about 4 times a week and seems to be enjoying getting outside the house a bit more. She doesn’t really complain about being cooped up inside the house, but when we take her out and she gets to see out the car window you can totally tell that she’s much happier. She stares out the window and looks like she’s completely in awe of everything around her and is more alert and aware of things when she gets back home. I wish we could take her out for longer periods of time every day but she really isn’t strong enough to sustain more than a few hours. She’s working on it.

While she isn’t in therapy, my parents constantly work with her. They’ve been strapping 5-8 lb weights on her arms and coach her to raise them repeatedly. This is hard even for me! I can’t imagine how hard it is for her but she is doing a great job. She can raise her

Hair is long enough to be in a pony tail again!

Hair is long enough to be in a pony tail again!

arms above her head very slowly and can touch her nose for a second. Due to the muscle relaxers being released with the Baclofen pump, her flexibility is coming back. We stretch her out in the mornings and when I’m there I try to stretch her arms up to her face. She seems to like that a lot probably because it’s been over a year and a half since she has been able to touch her own face. Imagine how hard it is for her to not even scratch an itch on her face or move a hair from her forehead? It’s so heartbreaking.

I try to get to Ashburn to see Sherrin about once or twice a week (depending on my school and work schedule) but when I’m not there I try to Skype with her every few days. I’m not going to lie, I slack off a lot when it comes to this. My participation in Sherrin’s progress is crucial because she tends to listen to me more when it comes to certain exercises and I give her a little bit more motivation to try harder, but some days I can’t be as present as I want to be. Sherrin goes to bed around 9 PM, which is normally about the time I’m done for the day and can relax, so our conflicting schedules make it hard to talk all of the time. It’s hard to find time, but I know that this is serious, so I try my best to make time for Sherrin. She deserves at least that.

I try to remind Sherrin that she’s my big sister, not my younger one, and that I look up to her for everything. It’s all extremely true, but she forgets that a lot since I’m the one taking care of her and not the other way around her. It makes Sherrin feel like nothing has changed and that she still has some authority over me. I remind her of all the times she’s screamed at me for stealing her clothes or how she’s smacked me in the head for saying something dumb so that it still feels like we are sisters and not just caregiver and patient. I still go to her for advice. Though she can’t fully communicate back to me since she can only say a few, quiet words at a time, I don’t trust anyone else more than my sister.  I ask her what topic I should write a research paper on or what I should get my boyfriend for his birthday, and she normally has great ideas! I’ll mention a list of things that I’m considering and she’ll tell me which ideas she likes the best. I cherish this advice so much because I know that I could very well not have had it anymore very easily. I’ve always admired her, even though we used to fight 24/7 when we were younger. I was the definition of the younger sister; I copied her style and would try to repeat the same sayings that she would come up with. Isn’t imitating the most sincere form of flattery? So when Sherrin and I talk, I let her know that she is still the person I’ve always looked up to, and yes, dynamics have changed and conversations aren’t entirely the same anymore, but I am still her baby sister and won’t do anything without her approval.

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Sherrin home in January and nominate my mom!!

I apologize for the delayed update!

Lots of news with Sherrin, some good, some… eh.

After being approached by multiple people to nominate my mother, I decided to encourage others to nominate my mom, Careen, for a contest called, “Unstoppable Moms” on the Live with Kelly and Mike Show. The contest chooses four finalists out of all of the nominations to be sent to NYC where they will be put on the show. From there, people can vote for their favorite mom online and the grand prized winner will receive $100,000, money that can be well used for Sherrin’s care. It’s a title that my mom certainly deserves! Since I am a direct family member, I personally am not eligible to nominate my mom – which is why others should! I have gotten a great turn out so far for people nominating her based on social media (thank you guys so much!) and I want to continue the momentum! Nominations can be accepted until February 7, so there is still time left! My goal is to absolutely flood the judge’s inboxes so that my mom really gets noticed. Here is the information you will need if you want to nominate my wonderful mom for this:

Link to vote: http://livekellyandmichael.dadt.com/contests/momnomination/

Picture: Use this one!

Use this picture to nominate my mom for Unstoppable Moms!

Use this picture to nominate my mom for Unstoppable Moms!

Entry: Anything you want! You can talk about how my mom tirelessly works to help Sherrin with therapy running on 2-4 hours a sleep a night on a regular basis; how she spent roughly 4 months sleeping next to Sherrin almost every night at the hospital to watch over her; how she is beyond modest; how she is a retired Army officer that should be enjoying her retirement instead of sacrificing her health to take care of her daughter; the financial burden on top of the emotional draining of taking care of Sherrin; or how she does all of this with a smile on her face!

Name: Careen Baggott
Address: 43128 Belgreen Drive Ashburn, VA 20147
Mobile number: 703-729-3313
Work number: 703-554-7459
Email: cpbaggott@hotmail.com

My mom’s response to when I told her I think she should be on the show: “I’m no different than any other mom.” She’s so great.

Dad, if there were a show called “Unstoppable Dads,” I’d nominate you with no hesitation! Love you too, Colonel.

Nominate, nominate, NOMINATE!!

On to Sherrin’s health…

Being at home with her has gotten a little easier (not by much). The first few weeks were beyond rough. She wouldn’t sleep through the night most nights due to either aching in her

Sherrin in the wheelchair van on the way to a doctor's appointment

Sherrin in the wheelchair van on the way to a doctor’s appointment

muscles, loneliness, or going to the bathroom, which pretty much that meant someone had to keep their eye on her every single night. Since changing some medication, Sherrin is better able to sleep at night and doesn’t wake up too much, meaning more sleep for us! It’s so hard to be able to watch her at night and then be able to function the next day well enough to get Sherrin out of bed, prepare Sherrin for therapy, feed her, etc.

Her seizures have been becoming more frequent. Well, most of them aren’t really full-on seizures; they’re classified as “spells.” They are very, VERY subtle and don’t last very long. What happens is her body goes completely limp, her eye pupils go pinpointed, and her jaw drops. They happen out of nowhere. I will be sitting in the living room with her, she will be sitting in her wheelchair and I will be on the couch and I will be paying attention to the TV for five minutes. I turn back to her and she’s going through one of the spells. You can normally snap her out of it by either gently slapping her face or yelling at her. But, if I didn’t look back at her during that five minutes, or had gone to the bathroom, anything, she could be having a spell. I’m sure it happens way more than we realize, while we think she’s sleeping or we have

Sherrin and dad passed out on the living room couch - so cute!

Sherrin and dad passed out on the living room couch – so cute!

to step away from her. They aren’t totally dangerous, but we don’t want them!

She’s had one real seizure (that we know of) since she’s been home. These seizures cause her one side of her face to shoot straight up, her body pulsates, and she drools or moans for sometimes up to 10 minutes. Every time she has a real seizure we have to adjust her medication accordingly, which can either cause her to be more sluggish or keep her up all night. I hate you, epilepsy.

Sherrin has been really doing great in physical therapy. We’ve had an awesome therapist that comes in four days a week and has gotten to know Sherrin and our family really well. She’s able to get Sherrin to stand up with assistance. She puts a bed sheet behind Sherrin’s back while she’s in the wheelchair and pulls her up by pulling on the bed sheet around her sides and takes two people to stabilize her while she’s up. We’ve even been getting her to try to walk while she’s standing. We get her in the standing position and lean her to one side so her weight is on one foot, tell her to kick out the opposite leg, lean her body weight onto that leg, and do it again all while we are holding her for support. She’s been able to take about three of these consistent steps so far.

Sherrin continues to beg for her room, though. Since we don’t have a wheelchair lift that leads from the main floor to upstairs, it’s nearly impossible to get her up there. We were able to get her up there one time, with the help of four people. It took my mom, dad, my boyfriend Sam, and myself to lift her, walk her up the stairs, and place her on her old bed (that she hasn’t seen since May 2012!). Even though it was a huge struggle to physically get her up there, it was so worth it! Once we laid her on her bed, she had the BIGGEST smile on her face just full of awe and happiness. It made me feel so good inside. She looked all around her room and stared at the hundreds of band posters on her walls for a good hour. It was, without a doubt, the best day she’s had at home so far.

Since I’m back at school in DC for my last semester (so close to graduation!), I’ve been commuting at least once a week to Ashburn to help my parents take care of Sher. It’s always so good to see her and my family because Sherrin’s face lights up when she sees me but, I mean, this isn’t exactly how I pictured I would spend my last semester of college (or the past year and eight months for that matter). I think social media has a lot to do with it. When people post statuses or pictures about how they’re “living it up” for senior year, I get sad. While a lot of my friends go out a few nights a week, I have to stay grounded and help take care of Sherrin. Obviously, Sherrin is exponentially more important than my social life, but it still just stinks sometimes. I had to grow up really fast and realize what’s important when I was only 20 years old. But, like my parents say to nearly everything, suck it up! That’s military parents for you.

As another reminder, SHERRIN LOVES VISITORS!!!!!!!! Visits from friends put her in SUCH a better mood. We highly encourage friends to come around and stop by, so please do!!

Also, nominate my mom for UNSTOPPABLE MOMS!! You will not regret it J

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Welcome home, Sherrin!

Well, it happened. After all of the talk and worry and planning, Sherrin came home from the hospital on December 15, about two weeks ago. One year, 7 months, and two days my sister spent in the hospital and now we are slowly trying to figure out her new life at home. We have transformed our basement to be Sherrin’s room that is equipped with her medicine, linens, wheelchair, Hoyer lift, and every piece of equipment needed for therapy. We put in a stair lift on the staircase that leads to the main level of our house from the basement. With this, we can roll Sherrin and her wheelchair onto a platform and raise her up with a remote so that she can come upstairs.

It’s an adjustment to have her home, a huge, huge adjustment, and it hasn’t been easy to say the very least. The way I describe Sherrin being at home is great for her, but a huge burden on

Sherrin and I on Christmas at home

Sherrin and I on Christmas at home

my dad, mom, and me. For Sher, she gets to be in an environment in which she knows and is familiar as well as getting to see her friends nearly every day. Her friends were probably one of the most important things to Sherrin before the accident, and being away from them for so long practically killed her. Being home makes Sherrin feel more normal and not just a patient in the hospital.

However, for my family and I, it is exhausting to have her home. We watch after her constantly. It literally does not end, but we’ve been able to have some help so far. My dad arranged an at-home care service for Sherrin that provides nurses, aids, and physical and occupational therapists for about five days a week. The service is pretty great so far and we’ve had little to no problems with them, but it’s a small company and the one of the only ones in the Northern Virginia area, so we didn’t have much of an option. This was a problem we have been worried about since the beginning of this experience – adequate brain injury specialists simply do not exist in this region. Neurology is a highly specialized medicine that is only concentrated in very few parts of the country, like New Jersey/New York, Atlanta, Denver, and Chicago, so being in the DC area is a huge obstacle to provide Sherrin the care that she needs to make a recovery. My parents debate about moving back to New Jersey permanently so that Sherrin can go back to the doctors and therapists that were helping her so much, and who knows, maybe we will one day, but for now we must make do with what is available in Northern Virginia.

One of the main problems we have with the care in this area is that we don’t have help at night. When Sherrin was in the hospital, my parents and I would stay from 8 AM- 8 PM and were able to go home and sleep for the night while the nurses and aids at the hospital watched Sherrin. Now, we don’t have that anymore. There isn’t a service that will provide a nurse or aid for a brain-injured person for overnight, so its either one of my parents that watches her or me. And when it’s your turn to watch Sherrin overnight, you don’t sleep. Sherrin is almost like a newborn baby that needs care at every hour of the night. During the first few nights she was home, one of us would sleep down in the basement on the couch next to her. Now, we put a video baby monitor on her so that we only have to go down to the basement if we hear her wake up, which is often. Sherrin has not been sleeping well at all (some nights not at all) since she’s been home. Some nights she wakes up every 30-45 minutes and yells “Ow!” or “Oh my god!” or “Please, help me!” These pleas are hard to interpret. Sometimes she calls out to one of us because she needs to have her diaper changed or wants a drink of water or her hands are aching. One time she accidentally pulled out her feeding tube from her G-tube in her stomach and all of her food spilled over her bed and the floor (she gets fed through her stomach at night). But other times her pleading is just for attention. Sherrin was always the type of person that could never be alone. She was an extrovert to the extreme. She would refuse to do simple errands like going to the gym or mall unless someone went with her. So, the nights that no one is sleeping down there with her, she yells until someone comes down and checks on her. She just doesn’t want to be alone; I guess it’s scary for her, which makes me sad, but its impossible to be with her 24/7 like that. My family and I need to sleep, but anything can happen with Sherrin overnight, which is why we have to do this exhausting task. Without a doubt overnight care is the thing I miss the most about Sher being in the hospital.

Sherrin’s days so far have mostly been somewhat quiet since we are still working on choosing the right outpatient rehab center we want her to attend. We have occupational and physical therapists (no speech therapist, yet) come about 3 days a week so far that help Sherrin a lot. We are planning for Sherrin to get therapy at 3 days a week at home and go to a facility for outpatient for 3 other days, but this plan is still being hashed out with our insurance company and doctors’ recommendations. When Sherrin doesn’t have therapy at home, her friends will come by and hang out with her for a couple of hours. This is so great for Sherrin. When she sees her friends, her face just lights up and she can’t stop smiling. Like I mentioned before, her friends have always meant everything to her and it is so nice to see her happy and feel normal again. We try to start getting her ready for bed around 7 or 8 PM that includes a sponge bath or shower, getting her nightly medications, brushing her teeth, and cleaning out her G-tube. We leave her to go to sleep at around 9 PM but she really doesn’t fall asleep until midnight (if she does fall asleep that night). The reason why we put her to bed so early is that we are completely and totally exhausted from the day and pushing her bedtime any later is asking a lot out of us. We found that this time was a good compromise for both Sherrin and us.

Sherrin has been begging to go up to see her old room. She can’t really cry but you can tell she’s hysterical when we tell her that she can’t go upstairs. We didn’t put a lift on the staircase that goes upstairs to her bedroom because it wasn’t completely necessary and it cost about an extra $16,000. Yes, it’s heartbreaking to tell Sherrin that she can’t go up there but then at the same time we ask ourselves if it’s worth $16,000 — probably not. We have thought about carrying Sherrin up there, but that’s a very hard and scary task. Sherrin is 100 lbs of dead weight and she’s very stiff and fragile. We would need at least two people to carry her, my dad is the only one strong enough to do it but he can’t do it on his own. But then it’s a question of what if we drop her up the stairs? What do we do when we get her up there; just have her sit on her bed? We can’t bring up her wheelchair so she would be pretty much just bound to her room. When she gets upset that she can’t go upstairs I try to use it as motivation. I say to her, “Sher, if you want to go up there you need to walk up there, you can’t depend on us for that. It’s on you.” But she just gets sadder and falls deeper into depression. We try to distract her with other things so that she doesn’t ask for it anymore, which seems to work most of the time.

Sherrin was able to make it home from the hospital in time for Christmas, our first holiday that hasn’t been spent in a hospital since May 13, 2012. It was quiet. Sherrin had gotten pretty sick on Christmas Eve due to changes in her medication and had thrown up several times, so come Christmas morning she was very weak and quiet. Our family in the area was spending Christmas at my cousin’s house and had wanted us to bring Sherrin. Unfortunately, we can’t bring Sherrin there because she physically can’t get into the house (they have stairs leading up to the main entrance) and she isn’t stable enough to be out for more than a couple of hours without getting irritated or feeling weak. We didn’t want to do Christmas at our house with the family because it was way too much of a burden with everything going on with Sher. So, we just kept it quiet and had visitors stop by throughout the day. We exchanged gifts and Sherrin got a neck massager and seat massager that can be put on her wheelchair. She LOVED the neck massager and couldn’t stop smiling when we put it on her. I love it whenever she smiles or laughs, it is really the sweetest thing ever, and makes caring for her so much easier.

Sometimes (a lot of the time) I get really overwhelmed with the situation that we are in. It’s so exhausting to push through every day and care for Sherrin, but whenever she smiles or laughs I feel better. I know it sounds cheesy but it is so true. When I really think about my family’s new life and what my sister has to endure every single day, I fall into depression. I can’t help it and I feel like anyone with a pulse would do the same as me. But when Sherrin laughs or smiles, I am able to pull myself out of the depression in a split second. The way my mom describes it is that Sherrin is the light at the end of the tunnel. With all of the upheaval and constant battles, knowing that Sherrin is happy even for 5 minutes makes it all worth it. The other day I played a joke on my dad who was underneath the kitchen sink fixing our garbage disposal. Sher and I were in the kitchen and I yelled, “Oh my God, Dad, there’s a mouse right next to you!” My dad freaked and jumped 10 feet away from the sink. Sherrin and I couldn’t stop cracking up about it. Even if it was at my dad’s expense we both were so happy that Sherrin was uncontrollably laughing. It made all of the bad not seem so bad. Yes, tensions are always high in my household because we are both frustrated and exhausted, but attitude really is everything. Being able to snap out of the depressed mode is hard, but we have to do it for our sanity and Sherrin’s sake. If we crack then Sherrin can’t get the care she needs. You do what you have to do to save your loved one, so you forget about how you feel and suck it up for them.

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