This is a guest post written by my younger sister, Tiffany, who has a diagnosis of schizoaffective disorder, bipolar type. Once a month, Tiffany documents a single day in her life. The purpose of these posts is to raise awareness of what it’s like to live with mental illness. I’m also hoping the posts will help readers recognize that we all have hopes, dreams, challenges and mountains to climb regardless of our mental health status. If you’d like to read the posts I’ve written about Tiffany’s journey and all the guest posts she’s shared on this blog, check out the mental health page. Without further ado, here’s Tiffany.

My daughter, Raegan, started kindergarten yesterday. The process of changing routines was a bag of mixed emotions for both of us. I turned my daughter over to very educated, caring and knowledgeable individuals.

Prior to placing the kids in kindergarten classes, testing was done on each child. The kids were placed in rooms evenly, based on their current abilities. While Raegan was being tested, I sat with other parents and filled out paperwork. I had a difficult time concentrating on what needed to be filled out. I noticed my mind drifting at times. Questions needed to be answered, such as “What calms your child?” I was overthinking, including focusing on my grip. I wondered if I seemed out of place. During this process, I was also going through medication changes, so my self doubt was high. I have since started a new medication for ADHD, and am feeling calm.

During the testing, I was attempting to figure out how Raegan was going to get to and from school. I have decided that most days I will be delivering her and picking her up. One of the teachers in the room said to me, “This is Kindergarten, no worries. Everything works out.”

The day arrived when we would meet Raegan’s teacher and classmates. Raegan picked out a pink, black and white dress to wear with one of her favorite sweaters. My mom suggested that she wear her new black boots with the outfit. I did not want to tell my mom that I hadn’t seen the boots around for days. I searched and searched for the black boots and could not find them, so I put some tennis shoes on her and they worked. But my mind was focused on the black boots. They were eventually found at the neighbor’s place.

We left for the night with plenty of time to spare. We arrived at the meet the teacher event, and Raegan went running in front of me. I could sense her excitement and confidence. We arrived too early, so we decided to play outside. A former classmate of mine and his son were playing in the same area. Raegan begged me to play with her. I told her no. She needed to know that I am not always going to be able to walk beside her, holding her hand. Raegan soon yelled, “Hello, I need someone to play with.” The boy on the playground came right over. I was happy she had the confidence to speak her mind. Raegan will fit in just fine.

We proceeded inside and looked at the class lists. We also participated in a scavenger hunt, getting to know the school. We met some of the other kids in her classroom. The little boy she was playing with outside happened to be in her class and sits next to her as well.

There was a letter to open the night before the first day of kindergarten. I decided to let Raegan open the letter on Sunday morning while my brother was in town for the weekend. Inside, there was a letter from the teacher and sprinkles to put under her pillow for a good night’s rest. Raegan placed a few sprinkles under her pillow. Still to be determined what will happen with the rest of the sprinkles.

All preparations for the first day of school.

The first day of school arrived. I set my alarm early so I could get ready before the kids woke up. When I woke Raegan up, she started screaming. She wanted to sleep longer. I’m hoping that school wears her out. We had a wrestling match getting her clothes on for the day.

Then we stopped over to my parents’ place to relax and take some pictures. I left my son, Xander, with my parents and Raegan and I were off to school.

I did not really feel sad, because as I stated earlier, Raegan is being well taken care of. I feel she is ready for this new venture?! We sat with a couple neighbor girls and their moms for breakfast at school. I brought Raegan to her room and said, “See you later.” She was more concentrated on school than saying anything to me.

All the preparations for this big day, my firstborn’s first day of kindergarten, were worth it. Overall, I felt completely comfortable with the day. Raegan seemed to adjust to her new life, and got to be a line leader for having good listening skills. I’m learning the ropes of having a child in school, but still need to conquer the listening skills at home. I anticipate a wonderful year for Raegan. Thanks for reading!

Tiffany

This is a guest post written by my younger sister, Tiffany, who has a diagnosis of schizoaffective disorder, bipolar type. Once a month, Tiffany documents a single day in her life. The purpose of these posts is to raise awareness of what it’s like to live with mental illness. I’m also hoping the posts will help readers recognize that we all have hopes, dreams, challenges and mountains to climb regardless of our mental health status. If you’d like to read the posts I’ve written about Tiffany’s journey and all the guest posts she’s shared on this blog, check out the mental health page. Without further ado, here’s Tiffany.

As some of you know, I have a diagnosis of Schizoaffective Disorder, bipolar type, and ADHD. My mood can change from extreme highs to extreme lows within hours. When attempting to write, I realize how extreme my mood can be. I tend to write best when I am in a neutral mood. After thinking and rethinking throughout a day, I was stoked that I had a blog post idea. I was experiencing mania. When I started to reach a low, I began questioning myself, my ideas and my life. I was ready to give up.

I was introduced to the movie “Rudy” years ago. This movie is about staying motivated even when you feel like giving up. The loud voices in my head tell me I am not good enough. I cannot reach my goals. I am not listening to them today. Today I am writing my unedited thoughts on how important fashion is to me.

During back-to-school shopping for my daughter who is entering kindergarten this year, I started to think more about fashion. Fashion can create a picture of who we are and how we feel about ourselves. Fashion is the image we want to portray about ourselves. My personal fashion ideas vary depending on how I feel and how I want to express myself on any given day.

I tend to dress my children more traditionally. I have found that consistency with their clothing choices works best. I do not always know what is appropriate for them to wear on a daily basis. I tend to mix pieces of my style into their wardrobe. Sometimes family and friends help me pick out my kids’ clothing. For my daughter this year, I allowed my mom to pick out a few outfits that I approved of. I also picked out a few items on my own. My daughter is young, but gradually creating a style of her own.

I attended the Fashion Institute of Design and Merchandising when I was in my 20s. I had fashion ideas that I wanted to implement. I wanted to open a store called OuiSei. My plan was to complete my degree in Apparel Manufacturing Management. I had everything planned, including a runway show. For the runway show, I wanted animals to walk down the runway with models. I even had music picked out. I wanted the store to include all-natural fibered clothing, mostly hemp.

Guess what happened? I quit. My voices were telling me that I could not succeed. I was also experiencing something that I experience to this day. People promised to make my dreams come true if I’ll only give in to their desires. I do not agree with that way of thinking, and I would rather deal with genuine people who have no motives in mind. Despite my voices, I feel that the world is set up for us to succeed. We just have to be careful who we let into our world.

After quitting fashion school in Los Angeles, I decided to try working in commercials on TV and in movies. I was able to truly be myself during this stage of my life. While working in that business, I loved changing clothing so I could portray different characters. I continue being that person today. I would not say that I have a set fashion style.

I had a very tough time coming up with this post and getting organized. When I am in a certain state of mind, I can’t get organized and I feel like giving up. My dad helped me outline this post. We talked about my ideas over coffee. He asked me at the end if I was going to ever pursue my dream of opening a clothing store? I told him that I don’t know what the future holds. I wouldn’t mind having a store that people could come chill at and look for comfy clothes and accessories. For now, I am going to keep trying, as Rudy did, even if forging ahead seems to be impossible.

Tiffany

This is a guest post written by my younger sister, Tiffany, who has a diagnosis of schizoaffective disorder, bipolar type. Once a month, Tiffany documents a single day in her life. The purpose of these posts is to raise awareness of what it’s like to live with mental illness. I’m also hoping the posts will help readers recognize that we all have hopes, dreams, challenges and mountains to climb regardless of our mental health status. If you’d like to read the posts I’ve written about Tiffany’s journey and all the guest posts she’s shared on this blog, check out the mental health page. Without further ado, here’s Tiffany.

Two weeks ago, I traveled to a bigger city to have intense neuropsychological testing done. I had the same testing done nine years ago when I spent seven weeks in the state hospital after a prescription drug overdose. Doctors are going to compare past and present test results to see how my brain is functioning. This testing helps nail down my mental illness diagnosis and to get additional help in other areas if needed.

A neuropsychological evaluation is a comprehensive assessment of cognitive and behavioral functions using a set of standardized tests and procedures. A variety of mental functions are systematically tested. A neuropsychological evaluation is critical for understanding which brain functions are impaired and which remain intact.

My dad drove me to my appointment. He asked me if I was nervous about the testing, and I told him that I was more nervous about leaving the kids behind for the day. My dad and I talked about music and his time in the service. We seemed to have a very relaxing drive.

We arrived to the testing early. There was a Perkins nearby, so I decided to eat breakfast and drink some needed coffee. After that, my dad dropped me off at the testing site. I was early, so I went for a walk outside and enjoyed the beautiful weather. I felt free in that moment. I was in a bigger and new city. I went back in to prepare for the testing. I skimmed through a bit of a gossip magazine and waited for the doctor to call me back. My dad was eating at Red Lobster during this time.

The doctor called me back to his office and told me to make myself comfortable. I sat in a chair directly across from him. He asked me a series of questions. I was being analyzed. I asked him in the middle of the session if I could take a couple pictures for the blog post I was going to write. He told me no, these tests are confidential. If people were to see pictures, they may try to duplicate the testing or figure out answers prior to taking the test. He asked me a few questions and sent me out to the waiting area. I asked him how I did, with a smile, before leaving his office. I don’t remember his response? Being questioned made me kinda nervous.

A few minutes later, I was called back for more testing. I know that I excelled in certain areas because I felt as though I was playing a fun game. Other parts of the testing were very difficult. I felt frustrated and kind of sad.

After over an hour of testing, I needed a break. I told the lady who was testing me that I needed a five minute break. I may have taken longer? I went into the waiting area and was happy to see my dad sitting there. I told him how difficult the testing was. I was thinking of posting a status update on Facebook, but I did not feel the time was right. Why would people care anyways? So I proceeded to step outside, took a few deep breaths, closed my eyes and lifted my hands to the sky. I probably said a little prayer too. I raced back in because I told her five minutes, not fifteen. I was kinda excited to return to the testing because every new test was a surprise.

When I went back inside, testing continued for a couple hours. I am going to tell you vaguely about the testing without giving away details. The tester started by asking me general questions. Then I had to say words backwards and subtract backwards. She told me a list of words, and I was haunted by the list throughout the procedure. She kept telling me to say the words I remembered; I just heard a list of monotone sounds that I was not interested in, names of people who had no faces. Maybe if she would have let me look at the list, I would have done better remembering? I realized my short term memory lacks. We played a fun game where small keys fit into holes on a pegboard. I felt I mastered that, along with repeating visual images. Then came math. Even if I had a calculator, I would not have done well with that part. Sometimes I would just say, “Sorry, I’m done. I give up on that. I just cannot complete that part.” We ended the session with computer testing, which was around 350 questions.

The results from the testing should be back soon. I look forward to seeing the results. I am having the report sent to my psychiatrist who recommended the testing. I am also having a copy sent to me. My sister, who is a speech pathologist, is going to help me analyze the results. No matter what the results say about me, I am going to continue to live life and take care of business. Having a mental illness and possible cognitive impairments are just a part of me. They do not define who I am as a person.

Tiffany

This is a guest post written by my younger sister, Tiffany, who has a diagnosis of schizoaffective disorder, bipolar type. Once a month, Tiffany documents a single day in her life. The purpose of these posts is to raise awareness of what it’s like to live with a mental illness. I’m also hoping the posts will help readers recognize that we all have hopes, dreams, challenges and mountains to climb regardless of our mental health status. If you’d like to read all the posts I’ve written about Tiffany’s journey and all the guest posts she’s shared on this blog, check out the mental health page. Without further ado, here’s Tiffany.

My life is not all glorious and sucks sometimes! The night before, I told my mom I was going to write about this day. Little did I know, chances to grow were in the making. Here goes a day.

Positive attitude.

Tired.

Coffee. Pills. Smoke.

Brush teeth.

Kids awake. Feed them.

Psychologist appointment in an hour.

Get kids ready. Drop kids off at mom and dad’s place.

Off to appointment.

My psychologist asked me what emotions I was experiencing. We are working on emotion. I feel lonely, sad and get kind of angry at times. My psychologist recommended a book on loneliness for me to read. I am also in the grieving process. The stages of grief can last for years. Reality is that my dad is probably going to die in the next couple years. He included us in helping plan his funeral. The process has caused growth, and I’d almost say it has been beautiful. I selected a blue urn with butterflies on it for his ashes. When he dies, I am going to sprinkle them at special places. I also selected a pendant for his ashes. I am having a hemp necklace made to go with it. My dad is still around, and we enjoy each moment we can. We cannot always control the situation or outcome. Only God can. One day at a time. I am also grieving the loss of a boyfriend I was with for a year and a half. We are both addicts, and are attempting to live one day at a time. We realize that we cannot plan the future. I wish him the best, whatever direction his life goes.

Leave psychologist.

Coffee.

Pick-up kids from mom and dad’s place.

I drove home and found a book on the table outside my door. The book is called Women Who Love Too Much. Yes, I have always loved too much. This book calls for change, which is in process for me. My mental health worker arrived at my house. I was looking through the book and thinking. My mental health worker asked, “What’s that book telling you?” I told her I need to think about it and read it through. The rest of the time, we talked about what else was happening in life.

Pills.

WIC shopping. I think WIC stands for Women, Infants and Children? Those are coupons for food that qualifying families get. The food really helps us. We also get help with food from my mom.

That same day I decided to give away my pregnancy clothing to my adorable neighbor who is having a baby. I am done having children. This decision was hard for me, but I realize I have enough work with two children.

My mom wanted to bring all of us out for dinner. I just wanted to feed the kids at home. We came to a consensus for my mom to bring my daughter, Raegan, out for dinner. They also went shopping. This day, just live.

When Raegan and my mom got home, we went outside and played.

Pills.

Night time.

Kids asleep.

Planned time for myself, but I fell asleep because I was so tired.

Tiffany

It’s a great honor to introduce you to Kathleen who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Kathleen is a wife and mama of two sweet girls. Her oldest daughter, Teagan, received an incredibly rare genetic diagnosis of Trisomy 12p just before her first birthday. Teagan’s diagnosis has been incredibly life changing and has made life incredibly challenging. Kathleen loves her daughter fiercely and will fight to the ends of the earth advocating on her behalf, but this journey has also caused Kathleen to question her faith like never before. Friends, this post is ridiculously moving. I cried the first time I read it, and continue to be deeply moved with every subsequent read. When Kathleen submitted her post, she offered to tone down the anger and uncertainty given the spirit of my blog. I reassured her, “This is so good. So beautiful. I don’t even have words. It’s okay to question. It’s okay.” You must read Kathleen’s story. You simply must. This post embodies everything I ever envisioned this series to be. Thank you, Kathleen. 

My daughter was six months old when we first suspected something was wrong. It started innocently enough – our daycare provider mentioned that Teagan ought to be sitting up by now. We knew she had low muscle tone, but every doctor we’d spoken with had either brushed it off or attributed it to her difficult birth (her lungs were blocked and she didn’t get air for a few minutes). We figured it stemmed from that, and made an appointment with a physical therapist. Not incredibly worried.

As the months passed since that first appointment, the developmental delays began to pile up. My husband kept a positive outlook, our parents kept a positive outlook, and our friends would say things like “But she’ll be fine, right?” Call it mother’s intuition – I knew bad news was coming.

We began an onslaught of appointments to try and figure out what this elusive issue was. We visited neurologists, therapists, and early childhood specialists; we ran MRIs, EEGs and every test under the sun.

And we prayed constantly. I had a strong Catholic upbringing, and God was whom I had turned to with every hope, every fear, every gratitude for as long as I can remember. I prayed it was something we could overcome. Prayed it was something that would still allow her to have a normal life. Prayed that God would NOT let something be wrong with my perfect, sweet, lovely baby girl.

It was our second neurologist who suggested we do genetic testing. I will never forget that phone call, just before Teagan turned one, with the diagnosis: Trisomy 12p, the mosaic version. A portion of Teagan’s cells had extra material on the P arm of the 12th chromosome. That teeny tiny, itty bitty blip of material was causing – and would continue to cause – enormous problems. Our diagnosis was incredibly rare. Incredibly life changing. Incredibly limiting.

The days after the diagnosis were a blur of tears, snuggles, confusion and anger. Tears because I couldn’t believe I was being told that this wonderful little being in my arms had something “wrong” with her. Snuggles because I loved her so much and wasn’t going to let her down. Confusion because no one would give me a straight answer…will she be able to walk? We don’t know. Will she go to normal school? We don’t know. Will she have a good quality of life? We’ll have to wait and see. And anger because I didn’t understand how this could have happened. I thought God was watching out for me! I’m not perfect, but I’m a good person…and forget about me, what about HER?! She is 100% innocent! I was furious. And there was no one to be mad at. Except God.

I would head to work in the morning and scream at God for the entire drive. I would feel better during the day; when I was at work I actually knew what to do with myself. I would spend my evenings and days off with my sweet baby and decide the doctors and therapists were nuts, because my daughter was PERFECT, and they had to be mistaken.

My husband would research, which often times made us feel more confused and alone. The most complete study we found on Trisomy 12p was thirty years old, and listed forty confirmed cases. Forty. Of all the people in the world now, and of all the people who have ever been…forty.

And together, the three of us would progress. To the next doctor’s appointment. To the next brain scan. To the next therapy session. To the next developmental milestone. They came late. They came slowly. But when they did come, we would rejoice. This is still the way we operate today.

Needless to say, parenting has not been what I had expected. I didn’t expect to be a special mama. I didn’t expect to forego music and dance classes in lieu of physical therapy and speech sessions. I didn’t expect I would purposely use sign language in public so it was clear to everyone that something is different. I didn’t expect my daughter would ask me to sing Row Row twenty times a day because it is one of the few things she can communicate and it makes her feel connected. I didn’t expect to worry she would spend her school years eating lunch by herself. I didn’t expect to fear that someday she’ll live in a home and no one will come to visit her on Christmas. I didn’t expect to find it so hard to talk to my children about God. I didn’t expect I could be in a room full of friends and laughing children and feel completely alone.

I also didn’t expect to find out so much about myself. That I would be able to work so hard and love so fiercely. That I would become a unique kind of leader. That I would know when to fight for my daughter. That I would develop a level of compassion deeper than I knew possible. And I didn’t expect that the hardest worker I’ve ever known would be my own tiny child. It took five months to teach Teagan to roll over, something most babies don’t have to be taught. But she did it. It took three different physical therapists and inserts in her shoes to teach Teagan to walk. But she did it. She signs. She is working on talking. She is smart and stubborn and wonderful. And she loves. Oh how she loves, with her huge smiles and gentle touches, her sweet kisses and full body hugs.

There is a lot of confusion in my life, which you’ve probably gathered by now (warning: here is the part where I sound like a self-righteous brat). I feel incredibly lucky to have the determined, loving man I chose to partner with for life. And I know that were the bonds with some of my family members and friends not as strong as they are, I would feel more alone and less supported than I do. But I don’t give God credit for that. I did that. I feel very much self reliant. Maybe someday I’ll look back and see his hand in these “blessings” – but not yet. I’m still pissed.

I can go from hating God, to begging him for help, to deciding I don’t believe in him, to thanking him for my daughters, in the span of about five minutes. If I will ever believe the way I used to remains to be seen. I’m working on it.

The mantra I repeat to myself for my own broken faith, and for my role as a special mama, is a quote from Rudyard Kipling:

“God could not be everywhere, and therefore he made mothers.”

Well. I don’t know if it’s true. It doesn’t give any clarity as to why God would allow my daughter to have such a challenging life. But it does sum up how I feel about my duties as Teagan’s mom, now and as she grows older.

To protect her from harm.

To fight for her and the rights she deserves.

To be proactive about anything that will help her progress.

To push her to try harder.

To teach her to be an advocate for herself.

To let her know there is always someone behind her.

To make her possibilities limitless.

To create an environment where she feels completely surrounded in love.

I don’t know if this feeling came from God. My faith is completely broken, and at this moment, I can’t say whether or not I believe in him. But I’m not going to stop praying…hopefully that counts for something. And I’m not going to stop working, relentlessly, with my sweet little girl.

Kathleen

Kathleen is an Iowa transplant with a passion for wine, the Cyclones, Harry Potter, and most of all, her family. She lives in the Twin Cities suburbs where she enjoys getting outside with her husband and two daughters as often as possible, the way good Minnesotans do. She began blogging shortly after her oldest daughter’s rare genetic disability diagnosis in 2012 as a way to cope with a roller coaster of emotions and share her family’s story. You can read more about the Trisomy 12p diagnosis on her blog at rockinglion.wordpress.com.

 

This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 13 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. At the bottom of the post, you’ll find all guest posts listed and linked for easy reading!