When You Just Don’t Know What To Do

If you’ve been following my blog then you know that my life is full of normal family issues, plus the added not-so-normal issues that come with having a child with mental illness. I love my daughter, I wish I could help her more, I wish she didn’t have to struggle they way she does sometimes, but mostly I wish she didn’t have a mental illness.

Most well-adjust people realize that when you become a parent, there is a sudden switch turned on in your brain to love, protect, & provide for your child. It’s primal, innate, and you can’t ignore it. It’s what tells you whether a crying baby is hungry or tired, needs a diaper change or has a gas bubble. It never goes away, it just adjusts to your child’s changing needs as they get older. Most people do anything in their power to make sure they are the best parent they can be and ensure their child is prepared to become an adult. It’s your job to “Train up a child in the way he should go; even when he is old he will not depart from it” (Proverbs 22:6, ESV).

When you have a child with a fairly severe form of mental illness, you can do all the right things and still end up feeling like you’re failing. Some days, you just don’t know what to do. Take all the parenting books, advice from friends and family, and even some of the suggestions of doctors and toss it out the window. None of it will apply. You have to research and ask questions and advocate and get familiar with trial and error and make your own plan. In my case, you have to tell 3 different doctors that they’re wrong and keep looking for answers, get the right testing, get the right diagnosis- only to realize that things have gotten so bad that you have to have your child admitted to the state mental health hospital because everything you’ve done on an outpatient level isn’t effective. You know that despite your best efforts nothing outside of intensive inpatient treatment will benefit your 13 year-old daughter at that moment. So you make the hardest decision of your life and send her 80 miles away because you can’t help her anymore, you can’t protect her from herself, and you can’t provide what she needs.

Six months go by and great progress has been made. It’s like having a new child- literally 180* turn around. She’s happy, she’s smiling, cooperative, insightful, kind, loving, and has gained knowledge about herself. She has learned a bag full of “tricks” to be able to function outside the hospital. She gets to come home EXACTLY six months after her admission. As a parent you’re just so thankful to have her home, to have some sense of normalcy, and to have her feel better. Things are great and everyone is getting along and life is feeling right for the first time in a long time. Then the honeymoon ends.

Everyone has good days and bad days, and if they don’t they’re not normal. But recently I’m starting to realize that we’re (as a family) back to walking on eggshells and worrying about how to phrase even the simplest of words. The ups and downs have been more frequent and the bad days are starting to resemble life before hospitalization. I can tell when she’s letting her illness take over and speak for her and when she’s being a typical 14 year-old kid- most of the time. Then there are days when I just don’t know what to do anymore. I feel like maybe I’m dropping the ball somewhere, maybe I’m expecting to much, maybe I’m not expecting enough, or maybe her illness is evolving.

There are no easy answer when dealing with mental illness, especially when it comes to children and adolescents. Even more when it’s your child. I wish I could take it all away from her. She puts on a face of fearlessness and bravery, but she’s fragile and can be easily broken. I’ve cried so many tears over the last 18 months I don’t think I have any left, even when a good cry would really be nice. I worry about her future. I worry if she’ll be able to “adult” normally. I worry what will happen when I can’t make sure she takes her meds everyday or that she’s taking care of herself appropriately. Even when she makes me angry or upset because she’s said or done something to intentionally upset her sisters or mouths off to my husband, I keep telling myself silently that it’s going to be o.k. I remind myself that she can be kind and caring, compassionate and tender, my child yet a stranger.

I’ll never give up. I’ll always be pushing for more resources, more education, more awareness, and more strength. I’ll, WE, will get through the changes and the bad days. We’ll continue to celebrate small victories and learn from our setbacks. I’ll remember that this is my purpose her one earth. We’ll see the blessing in anything and everything, even the things that seem like they may break us.

I’m trying harder to “Let go, and let God”. I know that whatever I cannot handle only makes my trust in Him stronger and my faith even fuller. Even when I just don’t know what to do, He does.

“For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”- Jeremiah 29:11

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Lately…

Lately life has been, well, busy. Between three kids in school, being school full time myself, having our new fluff-ball Paisley, balancing being a mom & wife…

Lately Audrey has been stable. Ups, downs, good days and bad days, moments of sincere love, happiness and kindness, and also moments of confusion, blind anger, and disappointment in herself. Paisley starts her Puppy Obedience 101 in a couple weeks so I am hoping this will give her a sense of purpose and pride.

Lately I have an overly emotional middle child. She loves everyone so much but then would give anything for a few hours of peace and quiet. She would be content reading books in her sweats or riding her bike alone for a while. She tries so hard to be understanding and tenderhearted in a house where even the most patient person might get twitchy.

Lately my little eight year old has been dramatic. Like, really dramatic over little things. The puppy  scratched her- time to amputate. She has her behavior corrected- all the problems of the world are her fault. She is asked to do her chores- she’s an underpaid maid. She is told she needs to practice her addition and subtraction facts- she can’t do ANYTHING right. I’m not sure why she reacts the way she does. Everything is approached in a level headed manner and in an age appropriate way. The other day I literally just stared at her after trying calm her anxiety over something- I didn’t know what else to say or do. I just stared. On a positive note, she started swim classes and is loving them!

Lately my husband and I barely get anytime to be together alone. The kids are SLOW to get to bed, he works terrible hours (6 am to 330 pm), and has to be in bed by 10 pm in order to function properly the next day. I miss watching our guilty-pleasure TV shows, having time to just talk uninterrupted or to take a day off from everything and just be lazy together. Even with the kids in the house on lazy days we can still give each other some much needed attention. Tomorrow (or today, rather) is his 47th birthday. We’re going to try and get some one-on-one time in.

Lately school has my head spinning. I have a year left, and I just applied for an international internship to Israel. I prayed about it, thought about it, and considered all the logistics of how things would go here at home if I am accepted into the program (which is a short term trip of only 11 days). Deep down I know this is a chance of a lifetime for me; I want this internship so badly. I also became a consultant for Thirty-One Gifts, a company specializing in organizational products, storage products, small purse & wallet line, and a small jewelry line. I was drawn to this company after a friend hosted a fundraiser for our family to help with the costs of getting a service dog. I loved their products and when I realized how much they give back to other organizations every month, it nudged me over the edge. This month they are donating  $75,000 to the Nationwide Childrens Hospital to fund behavioral health research & treatment for young girls. Clearly a topic near and dear to my heart. I am already off to a great start- and no I’m not plugging my business info in here. If you want it, just ask.

Lately I have realized that my family and I are blessed. Yes, life is difficult at times and there are days where I do want to “quit”, but when I put things into perspective it becomes clear that things could really be so much worse. I can get an education and so can my daughters. I can walk safely down my streets without worrying about a civil war going on in my town. I can worship freely. I can help others even when I’m having a bad day. Everyday I am given a new chance to be a better version of myself; to love better, to parent better, to learn better, and to give better. I can access healthcare for myself and my family. I wouldn’t mind a few upgrades in some areas but I have a good life and am thankful in all things.

Lately, when I think I have nothing left to give, God gives me the strength to keep moving on.

Lately, life has been good.

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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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