We need to do better

It has been a week since my daughter has been out of the mental health unit of the hospital. Last Friday at about this time we walked outside and she took her first breath of fresh air in three weeks. It seems like every day there is an article or report about how mental health benefits of being outside and breathing fresh air, yet there is no place at Strong where kids can do that. With all of the high-tech, stat-of-the-art wings at the University of Rochester’s Strong Hospital, there is no safe place for these kids to get fresh air. I think that needs to change.

I don’t know how to do it. I don’t know how to improve CPEP (Comprehensive Psychiatric Emergency Program), increase staff and space, provide more beds so kids don’t have to wait days to be admitted and begin treatment, or how to provide a safe outdoor space to aid in their treatment, but it needs to be done.

It breaks my heart that the adolescent side of CPEP is always packed. Kids and parents spread out on every piece of worn furniture, leaning on one another trying to sleep while waiting up to 24 hours or more to be seen. Some are sent home, others are held even longer while they wait for a bed to open up in the all but forgotten R wing. It was 48 hours for us.

It isn’t the fault of the staff. They do their best and are amazing. But the need is big - bigger than CPEP and the R wing can handle. Too many kids with an invisible illness that takes on so many different forms. CPEP and the R wing are the only place these kids get a respite from the stigma of mental illness. Where they can let their guard down and be completely honest with one another and the staff who work with them.

Unfortunately, I believe the stigma outside that wing is too great to get the financial support they need to do better, to provide more. That is our job to correct. We need to get the right people involved so we can do better for our kids. We need to be open about mental illness. We need to end the stigma and talk about treatment. And we need to support that treatment any way we can. It starts here. We need to do better.

Looking for "normal"

I’m at my wits end. To be honest, my house is a disaster. It hasn’t been scrubbed clean in weeks. The baskets of clean laundry are taking over the living room and there is still a mountain waiting to be cleaned. I expected to get so much more done this weekend since we didn’t have to visit the hospital. Instead it was more exhausting that I expected it to be. And I have no energy to do more.

At least my daughter is home. She came home Friday. It was a nice day, albeit busy. We began moving her into and organizing her new room, the kids and I went to the mall so the girls could get their eyebrows threaded and then went out to dinner. By the time we got home my husband was home from work and my sister, her husband and three kids had come out from Syracuse to see MacKenzie and help with the house. And it was right back to work.

As part of keeping a closer eye on MacKenzie and making it easier to check in with her, we decided to swap her room with our four-year-old son’s - moving her downstairs and him up. This was a more involved project than I had hoped – moving every personal item, weeding through clothes to get rid of ones that were no longer wanted or worn; stacking his things in the dining room while we brought down her stuff. Now all of the leftovers and unneeded items are still in there. We can’t eat at the table as a family until I get all of that cleared out.

Between feeling overwhelmed, hoping MacKenzie was okay, and worrying about the state of my house, I haven’t had much sleep the last few nights. Plus, moving my son upstairs and so far away from me has caused more separation anxiety for me than I expected. And I am dragging right now. I don’t want to keep moving forward; I want to crawl into a hole.

I have job, a husband, three kids who need me, and a house that needs my attention. I am working hard to balance it all, and don’t think I am succeeding. I am thankful to have a husband who is my rock and my shoulder to lean on when I want to collapse. I’d be lost without him. I also have three amazing kids who love each other, and us, very much.  I believe we are closer than most families and am thankful we have each other. I am just clinging to the hope that each day will be better and we will find and settle into our new normal. 

The next step….

My daughter is being discharged tomorrow. She is leaving the hospital and round-the-clock care. It is good news, but it doesn’t mean it’s over. For so many getting out of the hospital after a physical illness means you’re well, or mostly well, and the worst is over. Maybe that is, at least in part, true here. Maybe the worst is over, at least for now, but she is not “well”. This is just the next step on the road to understanding and living with a mental illness. Therapy, changes in medication, and extra support have all played a role in getting her to where she is today and getting her discharged tomorrow. She has a lot of work ahead of her; we have a lot of work ahead of us.

We need to do a better job of checking in with her, monitoring her moods and behavior, and setting realistic expectations. We need to do a better job of listening to her verbal and non-verbal cues about how she is doing. She needs to be better about letting us know when she is struggling, managing friendships and maintaining realistic expectations on how much we can do for her because there is so much that she will have to do for herself.

She has the hardest task of all ahead of her. She needs to be her own biggest cheerleader. She needs to speak up for what she needs and accept that there are going to bad days and difficult situations ahead. She needs to hold onto hope through the dark times, knowing that brighter days are ahead. She needs to hold onto the friends who care and realize that they are doing their best to understand her, even when they don’t get it right. She needs to let go of the people who will never understand and never get it right. 

She also has to be her own strength. She has to reenter school and deal with the questions about where she has been, and the comments about how “she always seemed fine.” She has to go to school with teenagers who don’t understand mental illness, don’t believe it is real, or don’t want to deal with someone who has it.  She will have to face busy teachers who are trying hard to prepare students for final exams. She will need strength to get up and face each day. Strength to address the ignorance with patience. Strength to push through it all to do it over again the next day and every day after that. 

People are going to be under the false impression that just because she is no longer in the hospital she is okay. Everything is fine and life is back to normal. That is not true. This is just the next step. And we will continue taking the next step every single day, one day at a time. 

So proud

I know she is really struggling, but I am so proud of my daughter. Proud of her for asking for help. Proud of her for being committed to treatment. Proud of her for not giving up.

Two weeks ago today I took her to the emergency room where 48 hours later she was admitted to the mental health unit. She has watched other kids come and go. Kids she thinks were “way worse” than her. And although she has been struggling with this, she hasn't given up. She has broken down, but she hasn’t given up. She knows she isn’t ready to leave. That her treatment will take longer this time. That the medications will take longer to become effective. That it will not be an easy road.

It breaks my heart that she is looking forward to a time when she will be “better” because she won’t ever be completely “better”. Not in the I-had-the-flu-and-got-better sense. She will improve. She will learn coping skills. She will have more good days than bad. She will value her life. She will be a different kind of “better”. But she isn't there yet.

I had to spend the weekend looking at pictures of her school-mates in all of their prom attire, while her dress hung unworn in her closet. I got a message from someone reaching out because she wasn’t in any of the photos and questioning why. She wouldn’t have been in them anyway. Because just like the person who messaged me, most of the people in those photos turned their back on my daughter months ago. They didn’t want to deal with her.  They didn’t see her illness as an illness and something she had no control over. And while I understand that and am not angry about it, it still hurts.

That is why I starting writing this blog. Because people need to understand that mental illness is real. It isn’t a choice. It isn’t something you can “get over” like a bad mood. I can’t tell you how many friends have told her she has no reason to “be sad”. That is what makes it an illness. It isn’t based on the good or bad things in your life. It doesn’t go away when you get your way or because you spend more time reading your bible or because you decide to be a better person or because you live in a nice house. It improves with treatment, support, and a shit-ton of hard work.

People with a mental illness need as much, if not more support than those dealing with a physical illness. It is invisible. It is invasive. It is relentless. And it is a daily struggle to manage. There is no relief. And there is so little understanding. That needs to change. 

I am so proud of my daughter. She is beautiful and smart. She is loving, accepting, caring and outgoing. She is open-minded and opinionated. She is thoughtful and giving. She is her little brother's best friend. She is so much more than her mental illness. And she is going to use her beautiful life helping others understand, building awareness, and making sure that others know they are not alone. 

No end in sight

Today is day nine. She was admitted to the mental health unit nine days ago. On average patients stay 7-10 days. Not her. Not this time. Today, they are still not ready to start talking about discharge. They don’t want her thinking about getting back into her daily routine, her life, just yet. No driver’s education, no hours in cosmetology classes, no AP tests at school, just getting “better” - whatever that means when you have a mental illness.

We go see her every day in some combination of parents and siblings, but it isn’t easy. Life is still moving forward and we are moving with it. There is work and school and daycare. There is laundry and dishes and grocery shopping. There is making a sandwich or having cereal for dinner. There is rushing to get things together so we can go to the hospital for a few hours. There is little “being home” before 8 p.m., just do it all again the next day.

And as she sits there, getting “better”, I still can’t help but feel that she is largely forgotten. That I have left her to get better on her own so I can go on with life.  That people think she’s fine. She’ll be okay. She isn’t dying in there. I wish people better understood - I wish I better understood - that she is fighting to stay alive. To want to stay alive. To want to be here. To want to be.

And there is no end in sight. No end to the rushing to see her, no end to the cereal and sandwiches, no end to being home at 8 o’clock every night, and no end to doing everything we can to support her and be there for her no matter what. I wouldn’t have it any other way because the alternative is unimaginable.  

And life just keeps moving forward.  

"If you Fall" by JJ Heller

"If You Fall" 

You are a house that's broken down, you are a house that's burning.

And everything in me wants to run, but that's not love.

If you fall, I fall with you.

If you hurt I feel it too.

Even if my heart turns black and blue, I will love you.

I planted seeds down in the ground, not every one is growing.

When I am tempted to give up, I choose love.

If you fall, I fall with you.

If you hurt I feel it too.

Even if my heart turns black and blue, I will love you.

Beauty and light will fight for you.

Goodness will rise, it shines for you.

If you fall, I fall with you.

If you hurt I feel it too.

Even if my heart turns black and blue...

If you fall, I fall with you.

If you hurt I feel it too.

Even if my heart turns black and blue, I will love you... I will love you.

You can hear it here.

My biggest mistake

I admit it. I failed as a mother. Just like so many others I misunderstood what my daughter was dealing with. While I have always sought help for my daughter when she said she needed it, I was never fully supportive. Because I didn’t think I had to be. Because I didn’t fully understand.

Until a week before this recent hospital admission, I believed my daughter could be better if she really wanted to. I believed that she was choosing not to get better because she wanted the attention. I believed she was using her illness to manipulate me and everyone around her to get what she wanted. Whatever that was. I believed she knew she was sick and wanted to use it to get out of trouble or as an excuse to avoid consequences for her choices. I thought I was doing okay because I at least behaved like it was all true, even though I wasn’t sure I fully believed it. I was wrong. I had failed as a mother.

But my beliefs have finally changed. And luckily, before I lost her forever. I believe that her breakdowns are not a choice or an effort to get attention. I believe it is her illness. I believe she says and does the things she says and does because of the illness, not intentional manipulation or deceit. I believe she wants to be better, but her illness won’t let it happen. I believe that every time she apologizes, she means it. I believe she loves her family more than anything in the world and would never intentionally behave in a way that is hurtful or selfish. I believe she is doing the best she can with the cards she has been dealt. And I believe it is exhausting and I don’t blame her for feeling like she just can’t do it anymore. She wants to be free from her head and she can’t catch a break.

I have stopped questioning motive because I know there is none. Now I can honestly put all of my effort, and all of my heart, behind helping her get better. I will encourage and listen, I will sit through the breakdowns and I will talk her through the lows. And she will get better because I believe her.

I know that many people in our lives feel the same way that I did. I get it. I don’t blame anyone for wanting to distance themselves from the drama that encompasses our family. I know that many will still judge me as a parent; saying that I am too lenient or that I am letting her fool me. I don’t care. Because I believe her. Completely. I will stop failing her and be the mother she needs. I will never fully understand what she is going through, but I will fully support her in her treatment and she will get through this because I believe her.

Stop judging my daughter

Seriously, just stop.

May is Mental Health Awareness Month, and more specifically, this is Children’s Mental Health Awareness Week. Ironic that yesterday I checked my daughter into the Mental Health and Wellness Unit for her third stay in just over three years. So many people have turned their back on her because they don’t understand that she has a mental illness. They think she is just trying to get attention or that I let her get away with too much or she is just overreacting. “She seems so normal.” And to you I say - Shut. Your. Face!

Please spend a moment in her shoes. You know something isn’t “right” but can’t seem to correct it. You know you have no reason for the mood swings, but can’t stop them. You get upset and can’t calm yourself down. Nothing seems to help you. You can’t control your thoughts or behaviors. You know you are being irrational, but can’t control it. You can’t identify your “triggers” because there doesn’t seem to be any. You lose even your closest friends because they can’t handle your neediness or emotional outbursts. To them you are selfish. You think the world revolves around you. You read way too far into everything everyone says and snap on the turn of dime. You can’t escape it. You can’t breathe. You are constantly feeling guilty over how you react, and apologize profusely after the fact, but no one listens to your apologies anymore. They don’t believe you because the same thing keeps happening over and over. They know you are going to do it again. You know you are going to do it again. You don’t want to. You don’t know when it is going to happen until it is too late. You can’t stop it. And no one gets it. You are on top of the world one minute – the person everyone loves to be around – and then you fall off that cliff - so far down no one is there. Everyone walks away and then they wonder why you have abandonment issues. The fear, anxiety, depression, mistrust, and misunderstanding are too much and you want to end it. You plan to end it. When you get the chance, you will end it.

I am not asking anyone to excuse “bad” or hurtful behavior. I am asking for you to understand that it is an illness and be patient with her. This isn’t her choice. She didn’t choose this illness and she doesn’t want to be where she is now. She doesn’t choose to hurt the people closest to her, but it happens all the time. She doesn’t choose not to have friends, but the illness drives them away. It is for this reason and so many more that this is so often a fatal illness. How about we all commit to being part of the solution, to help and support treatment, to hug a little longer and love a little more? How about we help her and everyone struggling just like her to get the support and treatment they need to keep going? To want to keep living. To plan to keep living. Because they get the change to just keep living.