Meet Paisley

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Well, here is our newest edition. This is Paisley, our Goldendoodle puppy that we will be training to be Audrey’s service dog. The wait list for organizations that train service animals were ranging anywhere from 6 months to 2 years, and right now that type of wait wasn’t something that was not feasible. Audrey needed her dog even if it we had to train it ourselves or find a local trainer to do the specialized training.

So that is what we will be doing. Paisley is only 11 weeks old so we will have the ability to start her training at home with the basics of housebreaking and other common training commands. As she progresses and gets older we will take her to a local trainer that can give her the specialized training to help Audrey and fit her specific needs.

Paisley is full of energy, playful, loving, and super smart. In the almost week we have had her she  has learned to sit, lay down, and to come. She loves to snuggle and irritate our German Shepherd, Shadow. She has truly filled our hearts with joy & filled an empty space in Audrey’s heart.

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Firsts

Last night marked a huge step forward for Audrey. She attended her first high school formal dance. She decided the day before that she wanted to go because a handful of her friends were going together as a group. I was thrilled but also worried. I was worried she would get to the dance and panic. I was worried she would change her mind at the last minute. I was worried she would get there and not be sure how to interact or be too nervous to really engage and enjoy the night. There were about 3 mini-emotional upsets but they passed.

And she proved me wrong.We bought the perfect dress & shoes. I did her hair in simple curls. Her make up consisted of a modest tinted moisturizer, setting powder, and blush.She was beautiful and confidant and amazing. I couldn’t imagine this moment a year ago, but here it was.

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I have never been more excited for her, more nervous, and also more aware of how quickly she is growing up. I am thankful everyday for the moments she enjoys as a beautiful, happy, thriving young lady. I pray for her continued progress in treatment. I take nothing for granted with her and her life. I know there is uncertainty about her future and there will continue to be for years to come.

But for now, I cherish these moments. I cherish her smile and her happiness in feeling like she belongs. I cherish the fact that the veil of her illness can be lifted, even momentarily, for nights like this.

What Nobody Tells You About Mental Illness

When you realize that somebody you love has a mental illness, your world very quickly turns upside down and inside out. You find yourself researching, reading, educating, and teaching yourself everything you can in order to be the best caretaker or support system you can. There’s doctor appointments, re-learning how to be a parent/spouse/friend, managing school or work, running your household, trying to maintain some sense of normalcy, and attempting to find time to rest.

What you’re not told about is the effects that ripple through the life you were previously living. Before I get much further, here are some statistics to help the context of this post:

Now with this information out there, here’s what nobody tells you about mental illness. Living with or caring for a person with a mental illness takes a toll on every fiber of your being. Physically, emotionally, mentally, spiritually, and in every other quantifiable way you can imagine. Respite is available, where your child can spend a day or weekend with a family or organization in order to give parents and caretakers a break. However, it takes a letter from Congress and an act of God to qualify for any services like that. If you’re a middle-class family, you may as well forget about getting any assistance that you will undoubtedly need. Access to mental health care is still the least available form of health care in the nation.

It puts an indescribable amount of strain on your marriage, as mentioned above, but even more so when you are in a blended family where there is a step-parent or step-children involved. You fight over how to parent your child, what the right treatment options are, how much time is dedicated to caring for your child, and who is best equipped to take on the various challenges that come up. Sometimes you and your spouse will even argue about if the behavior of your child is a result of their mental health disorder, their stage in development, or if they are just being manipulative. There may or not be occasions where you tell your spouse to “Stop, this isn’t helping”, “Why won’t you hear what I am telling you?”, or “I will deal with it by myself”.

If a married couple can’t be on the same page regarding the numerous variables in caring for a child with a mental health disorder the results can be unbearable and irreparable. Resentment, depression, avoiding each other, and cutting the other out of the loop regarding your child are all very real and very hurtful possibilities. There is a struggle to balance your love and devotion to your spouse and marriage while also meeting the needs of your child. Some days you almost feel like you have to choose one or the other. It’s a feeling that completely sucks.

This doesn’t apply to just spouses, but to the child being cared for and other children in the home as well.You see professionals fail to mention to also make plans for your other children- counseling for the adjustment in home life, planning out time to spend one-on-one with them, and trying to explain what is “wrong” with their sibling. Their school work may suffer and it’s difficult for children and siblings to know how to answer the questions that people will always ask. There are little to no organizations geared to assisting a family from a holistic point- addressing the child with the disorder, the parents, and other siblings. Finding the right support group or other organization is extremely difficult because, again, you are trying to find something that meets the needs of a group of people.

Finding a case worker/manager to answer your questions or to try to guide you through the maze that is the mental health care system can be an issue. The lack of providers and other team members that are involved in managing your childs care is lacking across the nation. The Utah State Hospital has approximately 350 beds to serve the entire state population of just over 3 million people. That serves less than 1% of the population. At Utah State University the wait to see a mental health care professional is 4-6 weeks.

Yet, at the end of the day, you keep pushing on. You continually pray for good days, small victories, and achieving the balance your family needs. You pray your marriage will withstand the challenges and that your other children grow up with a deeper  compassion for people. Outside of being able to cure your child or loved one, there is nothing you would change. You know deep down that you’re the only person who can care for them the way they need to be cared for. I will sacrifice and give, seek knowledge and guidance, and show love.

I don’t view my daughters disorders as something that makes her “beautiful”, “special”, or any of the other sentiments some people use to make their situation seem better or easier. I hate everything about her disorders. This isn’t because of the effect it has on me or my family but because it’s something that can’t be cured. She will always have to work 10 times harder than her peers to be successful. She will always have to cognitively deal with her emotions and manage her well-being. It’s a heavy load to carry and it’s my job to give her all the tools she needs while I can still make her take them.

Granted I have a strong faith base and fully acknowledge that God is helping us get through the ups and downs. Without Him, out life would surely be in shambles right now. Things aren’t perfect and on some days things aren’t even good. Despite this I know that, “Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance,  and endurance produces character, and character produces hope,  and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” (Romans 5:1-5, ESV).

I take my role as a mother/caregiver seriously. Even though there were so many things nobody told me about mental illness, I have become more aware & educated in my goal to provide for my family as a WHOLE. To meet the needs of my daughter with a mental illness, to show my other children that they are equally important and loved, and to hold my marriage together to the best of my ability. And when I fail, which I do, I know I can “Let go, and let God”.

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It Really Does Take a Village

School starts on Wednesday. I can remember being bummed that summer was over but I always enjoyed school and enjoyed going back for a variety of reasons. My 2nd daughter Laila is the same way, and I think my youngest Tessa will be as well (fingers crossed).

Audrey is NOT excited. She has been a nervous wreck for a week. The mere mention of school brings a look of terror and dread to her face. I am already imagining how Wednesday morning is going to go, feel like, what is going to be said, how long tears will be shed, how much anxious irritation I will face down, and how understanding and patient I will have to be. I will literally have to pull off being the Super Mom of emotional compassion and control. Luckily, I’ve been reading a book called “I Hate You, Don’t Leave Me” by Dr. Jerold J. Kreisman & Hal Strauss, and it has given me a lot of insight on how the mind of someone with BPD works. I’ve also been reading up on DMDD, & Dialectical Behavioral Therapy. Still, I’d be lying if I said I wasn’t nervous and anxious about the first day of school myself.

I spoke to Audrey recently, after registering her for 9th grade, about school and reminded her about her options if she is having a “moment” or needs to “take a walk” through the halls. That conversation reminded me of the many wonderful people God has placed in our life in order to help Audrey succeed.

Even though it took awhile Audrey has an amazing treatment team to help with the medical aspect of her disorders. We have a wonderful psychiatrist that is honest, transparent, talks to Audrey like a person instead of a patient, and makes us feel valued as a team. He listens to my thoughts on medications and doesn’t just throw pills at us as a first line of treatment. I am so thankful for him. Since Audrey came home from the state hospital she has seen a new therapist at a new clinic. It is the same clinic that finally gave us the diagnoses I felt matched her behaviors, and put us on the path that has led us to where we are today. Her therapist is an awesome woman who doesn’t just listen to Audrey and give feedback but challenges her thinking errors, asks about how Audrey can take control of situations, and really optimizes on the opportunities that present themselves during their sessions. She gives Audrey homework and keeps me in the loop as we move along. Again, so thankful for her. Without this team, Audrey wouldn’t be able to maintain her mental stability and function as well as she is now.

I can’t say enough positive things about Audrey’s school. From students, teachers, staff, and administrators – every person who knows Audrey and her situation has been compassionate, kind, thoughtful, sympathetic but encouraging. Audrey’s favorite teacher was a pillar of strength and understanding when things first starting to “go downhill”. She will have him for 2 classes this year and is the only teacher, or person really, that she has freely smiled at since being at the school several times. The Director of Secondary Education has made it clear that she has multiple places to go if she needs to talk or to take a breather. He has seen what mental illness can do to a person and despite the goofy, sarcastic front he wears, he has shown a level of care you don’t typically see in a school setting. I get a little more relief knowing he’s there, he’s got her back, and he won’t let her self destruct at school. Then there’s the front office staff, Lori and Brie. Honestly, if anyone would be willing and able to step in when needed it would be them. School hasn’t even started and Lori has already said that if Audrey needs anything she’d take care of her and let her decompress there. Last but not least, the counseling department. The three ladies that work in there must eat their Wheaties every morning in order to deal with everything that comes their way on a daily basis. There’s a couch for people who just need to reframe and refocus, and their doors are always open (unless they’re closed for some official reason). Without all of these people, and some I may not have mentioned, Audrey may not be returning to traditional school. They give me hope for her future and genuinely care about her educational goals along with her social success at school. Couldn’t be more thankful for these people!!

Family. I’ll just say right now that if I hadn’t had my parents around since Audrey was a baby, and especially since her disorders culminated last year, I don’t know where I’d be today. I don’t know if my other kids would still like me. I don’t know if my husband would have stuck around so willingly. Seriously people, my parents offered encouragement, breaks, help with my other kids, stepped in when I needed surgery, & visited Audrey on weekends when we couldn’t make it down. More importantly, they reminded me two things: 1) Hardships make us stronger and build our character, they bring us closer to God and teach us what real hope is; this applies to me as a mother, Audrey, and anyone else who has been fortunate enough to witness the amazing healing that has taken place in her mind (although she will always have a uniqueness to her). 2) God gave me Audrey because He knew that I would be able to provide for her in her time of need, and I would never let her down. I would cry for her, be strong for her, be upset an scared for her, celebrate with her and for her, and I would never stop working for her. Nobody is more equipped than I am to care for Audrey (even on days when “I Just Can’t Win”). My parents saw a strength and drive in me that I didn’t know I had until March of 2015. I didn’t always use those attributes the right way and sometimes I was weak and weary. My parents were always there to kick me in the butt and tell me I didn’t have time to wallow in pity. I had a job to do, and they would help me do it.

My church family offered prayers, would see Audrey, and were just supportive. The spiritual and faith part of life is so important. Even if it seems like not much is being done, it is probably the most potent part of the village that has surrounded us.

Life is hard enough when you are one person trying to navigate things on your own; it’s even harder when you’re trying to care for someone with a mental health disorder and you THINK you can do it alone. It really does take a village, just remember that village when they reach out to you for help someday. I know I can never do enough to say thank you for all the loving support we have received in the last 18 months, and all the future months to come.

To my village: Thank you. We couldn’t have gotten through this or this far without you. I am beyond blessed to have you and couldn’t be more thankful for all you have done.

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