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Sleep

Just a note, after I finished writing I realized it may be too graphic for some to read. I didn’t go into much depth but I talk about images of Ariella in the ICU. If that’s too much for you I advise you to skip to the last paragraph.

Sleep. Sleep continues to be elusive. Once I fell asleep last night I mostly stayed asleep but it took a very long time for me to fall asleep and I was up early. I have a reel of images running through my head and I can’t turn them off. These images mostly attack at night, though I do get flashbacks of them throughout the day. All images of Ariella in the PICU. Shattering images of her scared eyes when they were prepping to intubate her. Crushing images of her with her sad eyes and miming that she wanted to drink. Devastating images of her writing on her white board “What if I die?” and “I want to die. This is horrible. I might as well be dead.” Asking “am I getting worse?” Heartbreaking images of Ariella on her side when they were cleaning her, in obvious discomfort and a tear dropping from her eye. Distressing images of Ariella practically lifeless in bed, barely opening an eye even when being poked and prodded and moved around. These images do not leave me. I feel such anguish that this is how she spent the last two months of her life, mostly awake and aware. She wasn’t in pain but she was extremely uncomfortable and miserable.

Also very sad to remember are the few positive moments we had in the ICU because at the time, they were positive. Ariella being so excited for a taste of popsicle and Rita’s that she wanted me to tell everyone about it. Ariella being so excited for her tracheostomy surgery because it would mean the tube would be out of her mouth and she would be able to drink and talk. That was another milestone she wanted me to share with everyone because she was so happy about it. When Ariella woke up after her surgery she gave me a big smile when she realized the tube was out. We all thought that was going to be the turning point to get her out of the ICU. We had talked about what Ariella should get following her hospital stay as she deserved something big. And she said, well wrote, “how about new shoes?” All the hell she went through and was going through and she asked for shoes. Broke my heart. The last thing she had looked forward to was finally getting water. She was able to get just 5mL at a time about 3 times a day to start but boy was she happy to get just that. That’s how horrific it all was, that drops of water and tastes of a popsicle could bring that much joy. She had everything all planned out once she got out of the ICU. A big glass of water in the purple cup she won playing bingo, milk, Rita’s, and a shower. And then a big steak dinner when she finally got out of the hospital. None of those dreams were realized. She was on the schedule to have a swallow study completed but it never happened because she took a turn for the worse. After that she never fully recovered. The only comfort I take from this is that she was sedated near the end so no longer uncomfortable and scared.

To contradict myself now, I am glad Ariella was sedated for her sake but I regret not having the death talk with her. When she asked earlier in her stay “what if I die?” everyone thought she would recover and come off the vent, her lungs just needed more time. We did not promise her she wouldn’t die but we did say the doctors were doing everything they could to prevent that. When it became apparent that there was a good chance Ariella wasn’t coming home with us she was mostly sleeping so we never got to talk to her about how she was feeling about dying. By then was she scared to die? Or was she ready to die? What did she think would happen once she died? Where did she think she would go? What, if anything was she worried about? We have talked about death before and what happens after someone dies and Ariella believed in Heaven so I just hope with all my being that by then she was no longer scared to die and was ready to go. Because it kills me to think she might have been scared about dying near the end but didn’t tell us.

I started this post about sleep. This lack of sleep along with the grief is leaving me in what I would call a fog. Concentrating on anything for longer than a few minutes is impossible. I get distracted so easily but usually not by anything, I just end up staring into space. I am extremely forgetful and am having trouble just getting through routine tasks from start to finish. I find myself frequently losing my train of thought when in conversation. I wasn’t going to write today but I know if I don’t have something to do I will fall asleep and I am worried that a nap will make it even harder for me to sleep tonight. But maybe I should take sleep when I can.

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A New Month

Have turned the calendar twice now since Ariella died. Almost 2 months without her. Every turn of the page takes me further from her. On the other hand, I wish I could just keep flipping and flipping and flipping the pages to make time speed up. But it’s just the opposite. The days drag and sleep is barely an escape because sleep is elusive. Most minutes of most days are torture and I’m wondering once again how I am actually going to survive the rest of my life without my daughter in it. The okay day Saturday now feels so far away, just 2 days ago.

I can’t even explain what makes one day harder than another. There doesn’t seem to be any rhyme or reason. It’s just what I’m feeling at any given time. I will say that today I was triggered by a Facebook memory of Ariella and my father together at a baseball game. They are both gone now and I was so close to both of them. Ariella and my father very close as well. She was devastated when he passed in 2016. The picture was from 2012 so she was 4 1/2. Their birthdays are 1 day apart and were always celebrated together. I think they have a special connection. He died in February 2016 and she was diagnosed in February 2017. She had her bone marrow transplant in February 2019, one day after the 3rd anniversary of his death. I took that as a good sign, that maybe February would finally be associated with good. But nope February sucks. Now they are just 1 grave site apart.

I have a love/hate relationship with Facebook memories. I do like reminiscing but they make me so sad that we won’t get to make more memories. Facebook itself is a trigger. I actually don’t do much on Facebook but post my updates, check in on my bereavement groups, and check on the cancer families I have gotten to know so well. The rest is just too hard to look at. I may start scrolling but it’s all happy families, family vacations, Ariella’s friends doing things without her. It’s too painful to see what Ariella should be doing and what we should be doing as a family but can do no longer. We know our family and friends and Ariella’s friends are sad and miss Ariella, but it doesn’t consume them and it shouldn’t consume them. But I can’t lie, it is painful to see everyone else going on happily living their lives when we are stuck in the depths of despair.

Summer is a trigger. Not my favorite season but my favorite time of year usually. I haven’t worked the past 3 summers so got to do many mother daughter activities. Not so much in 2017 because Ariella was in the hospital much of that summer but even though she was in treatment 2018 we got to enjoy that summer the 2 of us and as a family. But generally during summers we would go to New York (started that tradition when she was 5 years old) and see shows on Broadway and take at least one other day trip. At least one family vacation every summer. Long days at the pool with evening swims. Hikes and finding waterfalls. Family bike rides. Parks and playgrounds. Snowballs and Rita’s. Strawberry and cherry picking. Going to baseball games and amusement parks. Ariella was fearless. The bigger, faster, and scarier the roller coaster, the better! Last summer as a family we went to Disney World through Make-a-Wish and Ocean City with Believe in Tomorrow. In addition to that Ariella and I went to LA for Dancers against Cancer. So much family stuff happens in the summer. I don’t have much to do this summer but haven’t even joined our pool (though I usually love the pool) because Ariella should be there with me, bugging me to watch this and throw this and play with me. Not sure I can go there without her. Not sure how I am going to survive this summer. I guess like everything else minute by minute, sometimes second by second. In no particular order by year here are some pictures from various summers.

One thing did make me smile today. Not one, but two of Ariella’s friends texted me today to see how I was and let me know they were thinking of us. They’ve reached out to me more than people I expected to and haven’t, and I am so grateful that Ariella had such good friends. I am grateful to her newer friends from 6th grade for welcoming her into a private school where the others mostly had been in school together since kindergarten. It didn’t take her long to have a good group of friends and they were amazingly supportive of Ariella during her treatment (she was in outpatient treatment during the entire time she was in 6th grade, all of 5 1/2 months) and when she was in the hospital. I am grateful to her dance friends as well for reminding her always that she was part of their family even when she wasn’t able to dance. I think many adults could learn a lot from Ariella’s friends.

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New Friends and Game Night

From an okay day yesterday to today. Back to where I was. Hard to smile, hard to want to do things, hard to motivate. Which is fine. Which is where I still expected to be. I’m glad yesterday happened. Maybe it happened when it did to show me that it will one day be possible to experience that regularly even though I’m not there yet. Just to give some light in darkness. The thing is I feel more “right” today. Though yesterday felt okay it also felt “wrong” to feel that way. Not a guilt thing, I know Ariella would have wanted me to have fun. She always cared about how others were feeling, always wanted to make them feel better. Whenever I wasn’t feeling well at home even though it meant I wasn’t paying attention to her she always offered her special stuffed animal to me to make me feel better. She wanted everyone to be happy and well and I’m sure she’d still want that. But it just felt wrong that I could experience joy so soon after losing the most important part of me. How I’m feeling today, how I’ve been feeling, feels more right. I don’t want to stay here but right now it’s where I am and I think where I need to be.

The good thing is that we had plans so I did get out today. We went to brunch at a friend’s house. Someone who also experienced child loss and had reached out to me many times (we have a lot of mutual friends, I did not know her prior to this) when Ariella was sick and after she died. I wasn’t ready to accept until now and I’m glad I did. David and I had a nice brunch with her and her husband and we talked about other things but mostly our kids. And it was good to talk to people that get it. However it is so wrong that instead of discussing school or the activities they do we were comparing hospital stays, funerals, and shiva. They are further out than we are from the loss but I would say it’s still pretty new for them as well. I hate that this was the reason we actually met this family because we will be friends from here on out, but I am glad that we met them when we needed.

While we were at our friends’ they mentioned they were going to game night with their daughter and a couple other families. Game night was my favorite night of the week with the 3 of us. Friday night was either game or movie night but I definitely preferred the games. We had so many games where we had to be silly or do funny things and they always made for a great night. Our only child died. So no more family game nights or movie nights. David and I have very different taste in movies, we always just watched what Ariella wanted to watch. Just one of the ways in which our world has been completely changed. Our family of 3 became a childless family of 2. Most of the week Ariella was either at the dance studio or doing homework, or not feeling great because of her treatments. And David and I may have had plans during the week as well. But almost every Friday night was spent with the 3 of us together. The house is completely different without a child in it. Our routines have completely changed and it is extremely unsettling. Not only are we missing our daughter immensely but also missing everything that went along with having a child, even the arguments and attitude. It’s so hard to figure out how to go on from here. I’m glad I was able to take off the last few weeks of work (I work in the school system so to go back with a few week left would have just caused more stress) but I will need to figure something out soon to get through the long summer days. To end on a smile here is just a sample of one of our game nights.

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An Okay Day

Today was an okay day. I can’t say good day because life at least right now is not good without Ariella in it. But I actually enjoyed myself today, for most of the day, even though I’m sad I can’t tell her about it.

Today good friends of ours held a golf tournament for us. Initially it was to be a fundraiser for our family to help with expenses with it looking like Ariella would be in the hospital for a while. Since she passed away we will be using the majority of the funds for Ari’s Bears. But anyway, I actually laughed quite a bit and smiled a lot at the tournament. Mostly due to trying to navigate the golf cart with my friend (neither of us golf, we were one of the beverage carts). I may have almost tipped us over twice. I’m sure Ariella was laughing. I know we were. But I did enjoy it. The joy came along with the sadness. The sadness didn’t go away, but I was able to carry both together. And it looked like we were in danger from storms for a bit, it even thundered around us and rained a bit, but it held off so the tournament was not interrupted. So it was okay.

I needed this day. This week that just passed has been just so hard, harder than after the initial days. I haven’t slept more than a few hours a night for the past 3 nights (and yes I have tried meds) and yesterday I felt very physically ill for most of the day. I wasn’t even sure I was going to make it to the tournament because I was so tired when I woke up this morning, but I’m glad I did.

I wrote this for 2 reasons. One, well because I’m blogging about this journey and thankfully I’m already finding it’s not without some enjoyment. But also because I know the dark days are not gone and I want to be able to look back at this and remember that despite the dark days there are some okay days and it’s knowing that those okay days will come again that will pull me through. And now I have written proof of it.

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Feeling Empty

Everything is just so hard. I can’t even get my thoughts out right now. Maybe it’s the silence, though I have the TV on constantly for the noise. But that’s the wrong kind of noise. It still seems so quiet. I can’t escape my thoughts, running through my mind in a constant loop. The images change but they are all of Ariella, who she was, her life before and after cancer, the hospital, what might have been. Anytime it hits me that she’s gone forever I panic, I can’t catch my breath, I start shaking. This just can’t be, and yet it is and I have no choice but to live with it.

Ariella of course was our world but she is my world more now than ever. Before she ended up in the ICU, even after she had been diagnosed with cancer I was able to think about things besides her throughout the day. She didn’t consume my thoughts and emotions. Maybe as a baby but I also had my own life to think about, separate from her. Now I feel so intertwined because of her absence. Every single thing makes me think of her, whether it’s something she would like, something we did, or something she never got to do, anything, makes me feel her absence. Even mundane daily chores. One of her chores was to set and clear the table. I think of that every time we have a meal. Cooking. I can count on one hand the number of times I have cooked dinner since Ariella died (actually since mid-February when she went into the hospital) and cooking for 2 is not so different than cooking for 3 except that I don’t have Ariella asking “what’s for dinner?” and I don’t hear her complaining about homework or grumbling about setting the table while I’m cooking. So it is completely different. It’s like that with everything I do.

I’m having a hard time getting out my thoughts today. I’m having trouble concentrating. The emptiness, the silence, the stillness, her absence is ever present and it’s stifling.

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Regrets

There’s not a whole lot in my life that I regret.  Even before Ariella was diagnosed with cancer we tried to live life to the fullest.  We spent time together, went on vacations, played games, imaginary play (so much imaginary play which I did not enjoy but would give anything to have her begging to play with me now).  Sure we were busy and had to do the regular day to day stuff but family and home always came before work for both David and me.  So I can’t say that I regret not spending more time together or saying I love you more or giving hugs, or things like that because I always did.  I have always known life can change in an instant from losing friends in high school and college and somewhat unexpectedly losing my dad (he had heart issues but I certainly didn’t expect him to die when he did).  I never wanted to be the person who regretted missing time spent with loved ones.  And I wanted to spend as much time with my girl as she would allow.  I always used to joke with her that one day she wouldn’t want me always around, that she would get annoyed with all the hugs and kisses and not want to sit on my lap.  She always disagreed, saying she would always want hugs and cuddles and to hold my hand, and it was true, even at 11 she often held my hand when we were out, she loved to cuddle together in bed, and had not reached the phase where she didn’t want to be seen with her parents.  We certainly saw the pre-teen attitude and eye rolls but mostly Ariella liked having us around.

Once she was diagnosed of course we saw things differently.  We always thought she would beat it but of course the thought was always there, what if she doesn’t survive?  So we did even more. Gave her as many experiences as we could.  Said yes to all the opportunities that came our way.  We did not put her in a “bubble” in between rounds of chemo and instead let her go to the dance studio, have sleepovers, go to Build-a-Bear of course, and do all the things a 9, 10, 11 year old should do.

So no regrets with how we lived our lives and spent our time before and after cancer.  But I do have a couple regrets and they are big ones.  I regret not trying to cuddle more with Ariella when she was in the ICU.  It was pretty challenging because of the vent and tubes and they said I could not lie in bed with her (I regret not fighting that too) but we both were aching to give each other hugs and just couldn’t.  I regret not trying harder to give her physical comfort.  I regret not trying harder to wake  her to hear me when she was so sleepy but not yet under actual sedation so she could hear me tell her I love her and goodbye every time I left the room, especially to go home.

But the biggest regret, and I know I am going to get all sorts of arguments and comments about this, is choosing to do the bone marrow transplant.  It was not guarantee of a cure, it is not standard treatment in sarcomas (it was a trial), and she was currently no evidence of active disease and having a good quality of life.  Of course we don’t know if the meds she was on would have kept the cancer at bay but I am certain she would have lived longer and would have had a better quality of life.  If she did decline due to cancer we would have actually been able to tell her goodbye, she could have told us her goodbyes, we could have gotten more hugs and kisses. She could have been made comfortable but maybe not as scared. Instead she had 2 of the crappiest months a child could have, only being able to communicate by writing, not being able to eat or drink, being uncomfortable with complication after complication, not being able to say goodbyes or know or be aware of the love that was surrounding her at the end.  She was scared she was going to die.  We never promised her she wouldn’t.  But we redirected and instead just tried to reassure her that that the doctors were doing everything they could. While of course we were worried about the same thing. Cancer is traumatic.  A dying child is traumatic.  But there is so much more trauma with the way that Ariella died than I can ever put into words and I will never not regret doing the BMT and nothing anyone says will change my mind.  The 3 of us walked into Hopkins together hopefully optimistic that the BMT would keep the cancer from coming back.  But only 2 of us walked out.  Wasn’t worth it.  It’s this, this is what plagues me a good amount of the time.  The actual medical and emotional trauma Ariella went through and that we went trough watching it. The not only not being able to help or comfort your child but feel like you’re the reason she’s in the pain and discomfort. I know we made the best decisions we could at the time given the information we had and we thought we were acting in the best interest of Ariella and everything else everyone is going to say about blaming ourselves.  Intellectually I know it.  But the regret will always be there.

As I said at the start, I don’t have a lot of regrets.  But I can’t let go of the one I do have.  And I’m sure I never will.

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Ordinary

It’s a beautiful summer evening. The type of night Ariella would be outside riding her scooter or bike or playing with the neighbors.  The type of evening we would have to argue with her when it’s time to come inside.  We would be outside with our neighbors all watching our children play. Maybe (definitely) having a glass of wine or a beer. Such an ordinary night in such an ordinary neighborhood and there is nothing ordinary about it.  I love watching the kids outside play but it also pierces my heart.  Because my kid should be out there with them.

The other day a boy knocked on our door.  He was an elementary school friend of Ariella’s, younger than her so they were not in school together this past year.  Anyway, they hung out outside together a lot when the weather was nice, mostly last summer.  Once school started in fall and they were inside more or at activities so they didn’t really see each other.  In all honesty he probably didn’t even know she was sick. Other than her bald head which was usually covered outside she certainly didn’t look or act sick. And actually thinking back she had hair when she hung with him.   So he knocked on the door the other day asking if she was home and could come out and play.  I had to tell this boy, this 10ish year old boy that probably had no idea that anything is wrong that she had died.  In our ordinary house in our ordinary neighborhood and shatter this boy’s ordinary existence.

We haven’t been ordinary since February 2017.  But we got used to it.  There was an end in sight.  Our new ordinary became ordinary but that was because of Ariella.  She never let cancer get in the way.  Even through relapse, we could almost feel ordinary.  Because she wasn’t in the hospital every other week and she was able to swim and go on vacation, dance, and go to school.  Her life was interrupted and out of the norm but not like it was when she went through treatment the first time.  Hell she relapsed in June and between that previous April and October we went to Disney, California twice, Ocean City, and North Carolina.  So actually that’s not ordinary but that’s the kind of extraordinary we like.  What I would give to just be ordinary again.

I always hated the expression the “new normal”.  But that’s what we had when Ariella was diagnosed.  I don’t think that changed when she relapsed, I think we were still in the same “new normal”.  But this, I cannot imagine this ever being our new normal.  What I would give to just be ordinary again. 

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Desperation

Each day I feel more and more desperate.  Desperate to have my child back.  Desperate to have our perfect family back.  Desperate to have our complete family back.  Desperate to find something, anything to help me not feel this way.  I’m crawling in my skin trying to figure out how to function when I can’t have what I want most in the world. It feels like the walls are closing in yet I have no motivation to get out.  Nothing brings me joy or pleasure.  I can be distracted at most for minutes at a time but the memories and thoughts come rushing back in and I’m devastated and desperate once again.  

I was remembering the other day something Ariella said years back.  She was probably about 5 or 6.  Some times she did say she wanted a brother or sister but she didn’t say it often and this one time I’m remembering, out of the blue she said “I love our family. It’s perfect.” And it was perfect.  Until we actually had Ariella David and I thought we would have at least 2 children.  But we had Ariella and our family felt complete.  And it felt perfect.  I loved our family of 3.  We had our moments as all families do but mostly we were a very close family that enjoyed spending time together.  We had dinner together most nights if she wasn’t at the dance studio, we had family game or movie night at least once a week, and we could talk to each other about anything.  We had everything we needed.  What do you do when you are missing something that is a part of you, that you can never get back, that made you whole?

No matter what I am doing, who I am with, thoughts of Ariella are constant.  Some are memories of happy times, some are more recent, but most are just about how I wish she was still here to share my moments with me.  Or heartbreak because of the things she will never get to experience.  Everything is a trigger, a reminder of life without our perfect, beautiful, child.  Last night especially.  We had our first board meeting for Ari’s Bears in the process of becoming our own non-profit.  She should have been there.  She should have been running the meeting.  I know she would have had incredible ideas none of us thought of.  It’s so hard to continue this without her.  But it’s impossible not to continue it.

The point of this blog is to truly express what life after losing a child is like.  And it’s extremely dark.  Every day I beg to die.  I DO NOT HAVE SUICIDAL IDEATIONS.  But I no longer fear death, in fact I would welcome it.  I do not want to live in this world without my daughter in it. The pain is too great. Missing her and never getting to see who she would become.  In talking with bereaved parents who have other children, they too have said they feel the same. And that if they didn’t have to for their other children they too don’t know how they would go on.  But we do go on.  We exist.  But it is just existing.  It’s not living. Parents further out promise that one day, years from now we will learn to live again, experience joy along with the sadness.  But do you know how daunting that is?  It’s not even been 7 weeks and I just feel so hopeless and shattered and sad.  Maybe one day I won’t feel that way but this existence right now is pure hell. 

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Here I Am

I don’t claim to be an amazing writer but I have always found writing to be healing and maybe my publishing can help me and others at the same time.  For those who don’t know me my husband and I just lost our 11 year old daughter, our only child in May from cancer. Well actually from the treatment.  She had complications from a bone marrow transplant which ultimately led to respiratory distress and kidney failure.

Ariella died May 9, 2019 and here more than 6 weeks out I still can’t quite believe she is gone.  I still can’t believe I’m never going to hear her voice, her laugh, feel her arms around me, argue with me. 6 weeks is not a very long time but it’s a lifetime when you have a huge part of you missing that can never be replaced.  When Ariella died we not only lost our world, but our identities, our active daily roles.  People keep reminding us that we will always be Ariella’s parents and she is always here with us and her legacy will live on.  Frankly that’s little comfort.  We are not parents in the way we want to be, need to be, the way we should be. We are not running a child around to her activities, making sure she does her homework, taking trips together.  We don’t get to witness milestones like having her Bat Mitzvah, getting her driver’s license, graduating, becoming the nurse she always said she wanted to even after everything had gone through, getting married and having a family of her own. She always said she wanted 5 kids!  So yes, we may always be her parents but we are no longer parenting and we’re missing out on most of it.  I can’t speak for David but I feel as if all my purpose is gone. My reason for getting up, getting out of bed each day, all of it.  None of it matters. I don’t find joy in the things I used to.  People who are much farther along this grief journey (grieving a child they lost) have said they did eventually feel joy and happiness along with the sadness.  However that seems so far away from me right now and it’s everything I can do just to make it through the day.  I can’t imagine being happy in this world without Ariella present.

As for her always having her legacy, that’s true too.  David and I can assure she won’t be forgotten by continuing Ari’s Bears.  That gives us reason to continually talk about her.  But it’s so bittersweet because she is not here to see what she truly started.  Ari’s Bears was her passion and she never will get to see it reach its true potential. I absolutely love that her friends want to continue to spread her mission but it is also so painful that they are not doing it alongside Ariella.

People keep asking how I am and they are asking in a sincere way.  They truly want to know. The truth is I’m awful.  I have had few moments of smiles and even laughter but they are short-lived and while I had forced myself to get out a bit even that has been next to impossible lately.  Each day gets  harder and harder.  Some days it really is just too much for me to even reply to text.  I will forever be grateful for the support I have received and will say that support from “strangers” on the internet has forever surprised me.  But I’m also disappointed by how quickly support from some has waned or even disappeared.  What people need to understand is that parents who have lost a child are going through something no one can possibly understand unless they have been there.  It physically hurts and sometimes as I said we can’t make ourselves get out, or text, or answer the phone but it still helps to know we are being thought about.  So to those who continue to always let us know your presence, and you know who you are, thank you.  Please don’t stop even if it is some time before I reply or agree to do something. 

If people want to know truly how I am feeling, and how are are moving through this as a family, feel free to read.  I’m writing mostly for my own benefit.  I started 2 weeks after Ariella died by writing letters to her but there are some things that I don’t want to say to her.  I’m not looking for advice or platitudes, just trying to figure out how to get my feelings out there so I don’t constantly feel like I am crawling out of my skin.  And maybe this can help someone else too.  Who knows?