Having a discussion with a friend today motivated me to write about this topic…something I have wanted to do for a long time. This is not just about Jake, and please take no offense. This is real and raw…not directed at anyone. And you may think your kid is empathetic, but you may be kidding yourself.

For those kids who are differently abled…they notice. They notice during the weekend they are at home while their friends are out having a good time together. They notice when they hear friends making plans and wishing so much they could be part of that. They notice when someone runs up to someone next to them with arms wide open screaming you are awesome, while they may get a passing “good job”. They notice thanks to social media what everyone else is doing, while they are home watching it…not living it. They don’t understand why…what is wrong with me, why don’t I have that? They notice when kids date and they wonder will I ever have a date? Being differently abled doesn’t mean they are not able to go out or get out. I am betting that if you asked their parents, they would do anything for them to get out and be with friends. The most heart breaking thing you can hear as a parent is this makes me sad, because I can see what is going on, but I can’t be a part of it. Only watching on line and wishing it was me too…they notice. They notice when a game is played with the directions of run up on stage and grab a partner, and by the time they get there no one is left. They notice when the tables at lunch are full of friends talking, while they eat lunch alone. They notice all their friends jumping into a car to go somewhere, while they get to tag along with their parents. They notice people making plans for the future, while they hope for a cure for a life limiting illness. They notice…so please notice them. ❤

On the outside, always looking in
Will I ever be more than I’ve always been?
‘Cause I’m tap, tap, tapping on the glass
Waving through a window
I try to speak, but nobody can hear
So I wait around for an answer to appear
While I’m watch, watch, watching people pass
Waving through a window, oh
Can anybody see, is anybody waving back at me? (oh)

…Dear Evan Hanson

My son had an amazing girlfriend, beautiful inside and out. Well, drugs did that relationship in after a while. We have remained FaceBook friends and she was married last weekend. She looks so happy and found a special person and the wedding looked amazing. I am sincerely so happy for her, she deserves it. Looking at the pictures made me happy for her, yet sad for my son. Sad where his life is, and how he is starting over again at almost 30. I was out today and stopped at Panera for lunch and I saw his ex-girlfriends Mom. I almost avoided saying Hi, as I seriously thought I was going to have a breakdown in my tomato soup. I sat away from her and faced away…but on my way out I stopped by and gave her a hug and said congratulations and how happy I was for her daughter. She asked how the family was, we chatted a bit then I said goodbye. Walking to my car I began to cry for all the things that I have missed with my son, and how uncertain I am for his future. I know you should never compare, but I did and I was so jealous of this wonderful life they have and how I wondered if this would ever happen for my son. It really punched me right in the gut, like hard! I sat in my car for a bit and forced myself to come back to reality, today is a good day. He has a place to live, and he has a job. He is not homeless, hungry or unloved. I think when your kids are born you have hopes and dreams for their life, but I guess it doesn’t always work out the way you expect it to. I have always wanted the song “Simple Man” to be our Mother/Son dance at his wedding someday. This is my favorite verse in the song…

“Boy, don’t you worry, you’ll find yourself
Follow your heart and nothing else
And you can do this, oh baby, if you try
All that I want for you, my son, is to be satisfied

And be a simple kind of man
Oh, be something you love and understand
Baby be a simple kind of man
Oh, won’t you do this for me, son, if you can”

Songwriters: Gary Rossington / Ron Van Zant

I pray every-night that we will get the opportunity to have this dance together…

Love Sheryl xoxo

As I drove back home from New Bedford this morning after dropping my son off at his Sober House, I tried to recall how many times we have been in this vicious circle of “recovery”. Detox, Program (if insurance will cover it), Sober Living. Round and round we go…when will it stop? Nobody knows. And you know what? I simply can’t remember how many shots at recovery it’s been. Now, today is a good day. My son is clean, working and has a place to live all on his own. I am always cautiously optimistic, because as much as a day clean is a good day, we have been here so many times before. You don’t want to bring up the past, but I just can’t run from it either. I think we all have experiences that just don’t leave us because its convenient or we would rather forget. They stay with us…for a long time. It was nice to have him around this weekend since its been 3 months since I brought him and all his shit to New Bedford. But at the beginning of clean time, its a rough time for us all. Trying to get to know each other again, realizing how far apart we have become. Trying to be supportive and trying to not get annoyed…and for me who totally does not have a poker face to not SHOW the annoyance. To see a younger brother who doesn’t even really know is older brother, except for what he remembers. And many of those memories, were not great.

Enable, don’t enable, what really works anyway? I learned that its different with all families. Until the addict wants to recover it really doesn’t matter how you handle it. Best I advice I have ever received was when I called Right Way in Boston. The gal on the phone told me to never work harder on his recovery than he does. Which means don’t call to see if detox/programs have open beds. Don’t buy them the 3rd car because they cracked up the first 2. Don’t bail them out of jail when they have done crime. They need to do the time. The addict needs to do ALL of the work. You can’t always save your child from pain…addict or otherwise. We all need to feel that pain. I listened to a pod cast recently and and they were discussing that so many parents try to save their kids from falling. Always with a pillow under them so they never fully hit the bottom. But look, in life we all fall. What you want to teach your kids is to keep getting back up. And I have to hand it to the kid, he keeps getting back up and trying again. I can’t imagine the strength that it takes to keep getting back up. But he does, so I pray for him and pray that he can kick addiction for good and get on with what he will bring to the world. He’s a special one…I have no doubt whatever happens it will be a lesson and a wonderful mark on this world. Pray for addicts, and don’t judge. IT CAN HAPPEN TO ENYONE! xoxo love Sheryl

During all my time as an addict’s Mom, that is the word thrown around quite a bit…Detachment. Well, what is detachment anyway? For me it has meant that when my addicted son (AS) is doing well I talk to him, help and support him. When he’s not doing well, I detach to protect myself. Which means I don’t talk to him and I don’t help him i.e. give him money, food, or support. It wasn’t always that way for me, as a Mother detaching from your child just seems cruel right?!?! Once I got over the guilt, and resentment I learned that not only was my son addicted to drugs, but I was addicted to saving him. I mean what parent wouldn’t do anything to save their child? It takes time and for me it took therapy and actually talking to recovering addicts. Trust me they are in meetings (AA, NA) talking. They tell you what to do…you just gotta listen! What they tell you to do is hard, man like REALLY hard. How do you turn your child away? I recall one day my husband was in Germany and my AS was not in a good place. He knocked on my door in the pouring rain needing a place to stay. I had to say no, but I drove him to Mcdonalds with a quarter to use the pay phone. Was it hard? YES…was it right HECK YES! Doing the right thing is so hard as a parent of any child, but even harder with an addicted child. It broke my heart to have to turn him away, but I had decided, and he knew, when he was not doing well he was not welcome in my home. And he knows that I have a line and that I will not cross it no matter what. Which brings me back to detachment. I detach when he’s not doing well, and reattach when he is. The detachment is really my mechanism to protect myself, my marriage and my younger son. I liken it to a brick wall, it goes up or down depending on how my AS is doing that day. If I didn’t detach, I would have likely had a nervous breakdown for sure. And how would I take care of my family, friends or life that way? It takes time and it’s truly not for everyone. With an addicted child you HAVE to have consequences, otherwise why would they change their behavior. Same with non addicted kids, consequences work…why change a bad behavior if there are never consequences for the bad behavior? And are you really helping them, or are you just trying to make yourself feel better? Think long and hard on that one. When I first went to an Al-Anon meeting they told me that I had to recover, and I’m like “What?” I’m fine, its my addict that is causing all the problems. It took me time, but I realized I could not help him with his recovery. That was all on him, but I sure could help myself recover by first detaching myself from the addict in my son. I’m not perfect, but I am better then average. I encourage anyone dealing with an addict, get help. You can’t help anyone else until you help yourself. There’s a reason on a plane that they tell you to put your mask on first, before helping your loved one. Self care and yes detachment are crucial for you and your addicted love one. I had a friend who lost a family member because his mom gave him $20 and he used it to buy drugs and Overdosed. I tell everyone, don’t make it your $20 that buries your child.

Much love…Sheryl xoxo

Well my last post about being lost had lots of comments and messages from people feeling the exact same way I am. While I am sad for those people, I felt like I was not alone…which for me was a comfort! I felt like I had hit my rock bottom the day I wrote about being lost. So, I had to look back at the times in my life that I felt that way, I mean I have tons of baggage (like 53 years worth) that has weighed me down a few times in my life. What did I do to pick myself back up…normally I push that shit down and move along. But I did something different, I made myself vulnerable on Facebook even and you know what? Just letting it out felt so amazing! Sharing my crap with my friends and how blessed with so many of them reached out to me personally! Sometimes you need your friends! And when you continue to make things look easy, sometimes people forget how lost you really are.

Self help is something I have done for a while, but I kind of stopped doing it. So I shared, cried, screamed even and then I got back up. I got back to what used to work…making the sales calls, telling people how I felt and what I needed. Last I checked most people are not mind readers, so tell people what you need. You may just be surprised at how many people are really in your corner! Back to exercise and back to not comparing myself to all those so called “perfect” people on Facebook. I am me…beautiful me and sometimes I freaking forget that. Well, I am back to doing what scares me and even though it was only one or two sales calls, its a start. Thank you to all of you who shared your sorrows and made me feel a little less alone in my sorrow. I am truly blessed and I am going to embrace the suck from now on because if I don’t that darkness will come creeping back. So don’t shut off your emotions…embrace them. Whether its good, bad or really ugly. I thought if I didn’t shut that emotion crap down, that somehow made me weak. Now I realize it’s ok to have weakness and to embrace it all! I felt if I felt that shit, like really felt it, I may never come back from it. WRONG again Sheryl! 🙂

We all have our shit right…so let’s all embrace the suck, while embracing the blessings all around us. Love to you…xoxo Sheryl #LIVE

I am lost…and need to be found. I have felt lost for a few years now, but lately I am really fucking lost. I don’t know what it is…is it my addict son? That the life of living with a drug addict is like a ride that you desperately want to get off, but you can’t. It just keeps going. How much is too much help, when is enabling too much? When will he get it together? Is it my Duchenne son who can’t walk, and who EVERYTHING is hard for. Who just wants to drive, but its utterly a long and ridiculous road that has put us in and out and soon to be back in debt? NOTHING is easy, its all phone calls and crying to get him what he freaking deserves. Is it worry for my grandson who also has Duchenne and the thought of my daughter dealing with it hurts. Is is the fact that my career which I loved doesn’t exist the way it once did which puts my in a position of having to figure out what do to about employment at 53! I don’t know what it is…or is it all of it put together? I am struggling to get back onto the right road. I am trying all the methods that used to work and while it helps for the short term, it doesn’t last. My Nana made me a tough one and usually I just push that shit way down into the dark and move along. But there is so much down there I can’t fit anymore. I am also struggling with fatigue which I am fairly certain has to do with my life…I mean who wouldn’t be freaking tired? If it wasn’t for my husband, not sure where the heck I would be right now…

For the first time I am thinking I need a medication to help me out for the short term. Not sure that’s the right path, but I need something for sure. I wish my counselor took my insurance because she sure helped. Working out is huge, but not filling that void lately. I just want to be back to the Sheryl I used to be. I really liked her! 🙂 Do we as women just go through this every once in a while? Life is so hard sometimes…I know this will pass, but hurry up already! Thanks for the listen…what do you do to get through the hard times? I am grateful for some amazing friends who love me whether I am lost or found. You know who you are! Pray for me…pray for my answer. Thank you…Love Sheryl

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I think one of the gifts from Jake being diagnosed with Duchenne is we are always trying to make wonderful family memories together. Sometimes the cost may be pretty steep, but sometimes you have to just say what the heck! My grandaughter loves Jo Jo Siwa, I had no idea who she even was, but when the tickets went on sale last year before Christmas I just had to get them. I bought 3 tickets and upgraded to a VIP experience. I really wanted to get the meet and greet, but I was beat to that by lots of other people! Still the tickets were pretty pricy, but what a great memory right?!?! So I kept them a secret until her Birthday, and that was a long time for me! Like a whole 7 months…I gave them to her at her Bday party and she was excited even not really understanding the VIP part. She was thrilled, which made me very happy!

So now the good part, we get to go! This concert was at a casino in CT, which was an interesting location for a kids concert, but the theatre was really nice and comfortable. We rented a room for the night (which cha ching was also very expensive!) and we drove down together and had a fun trip there! The check in line was long and so many girls with the JoJo signature big bows in their hair. I also had a Grammy one which was black…go figure! 🙂 We went to dinner at Guy Fieri’s place and the food was so delish. I highly recommend the trash can nachos. Then we made our way to the venue and waited in line for our VIP swag, which was a cool poster and VIP lanyard. We made our way to the seats and joined hundreds of screaming girls waiting for JoJo to come on stage. I knew none of the songs, but I just loved watching as my daughter sang along with Ellie and I thought she is the most adorable thing I have ever seen, and I MADE THAT!! Made my heart smile a million times over and I am pretty sure Ellie had a blast screaming out the lyrics from JoJo whom she loves! Of course, we needed some glow sticks to wave around during the concert, so the expenses just kept adding up. But in reality all the money in the world can’t make memories in the bank. I am not saying to get crazy, but dang it all spend the money…take the trip and drink the $18 dollar glasses of wine, because the memories we made this weekend will last a lifetime. I had the time of my life and I think I love my daughter more today then ever…if that’s even possible. The best advice I ever received is to LIVE! And I intend on making a million more memories in my lifetime…<3

My daughter has a lot of competition sharing my time with a brother who has Duchenne and one who is an addict…so any time I get to spend with her is very precious and I never take that for granted. I love you Katelynn Mary…to infinity and beyond!

Sorry kids, its been a while. Got me thinking that things get so crazy in life it’s really really hard to stay consistent! Sometimes I wish I could clone myself so I could be everything to everyone. I feel like I am always saying after this event things will get back to normal, but yet something else always comes up! So how the heck do you fit it all in? I think of myself as a mom, wife, daughter, sister, niece, cousin, payer of bills, DMD advocate, trustee, sales person, accountant, blogger, care taker, sister-in-law and friend. Jeez just saying all that makes me want to go take a nap! Zzzzzz…but seriously I am trying some different methods to at least keep me mostly on track.

#1 is Google calendar, its amazing. I can share all the events with the relevant people and boom it’s done. I schedule my son’s Personal Care Assistant days and invite him to accept which has saved a LOT of text messages. I can share Jake’s theatrical events with family and they will get all the pertinent info. I also have a Bill Pay category (which is green, go figure!!) which can help with the budgeting. It’s taken me a few years to get to something which mostly works. As with anything its a WIP (work in process)…you shouldn’t use your head as a calendar because like me you WILL forget something, so better to have it all in front of you in black in white or in my case black, white, yellow and green!

#2 Daily to do list…this is a must and the more consistent I am with that the better I am with time management. Doesn’t have to be the most explanatory list, just bullets. I feel like when I cross something of my list I actually feel better! Like yay I accomplished something! And if you’re like me you have several different categories of stuff you have to do, so better off to have it all written down. Then if you don’t get ‘er done that day, move it over to the next day. Here is my list from the last few days…oh and FU means follow up! 🙂

#3 ORGANIZE your work space. If you’re like me and have a million things to do that are in completely different categories of your life, you need a folder for everything. I have 2 filing cabinets in my office, one for personal items (like dream file, dogs, household equipment manuals, and divorce papers (think its time to get rid of those, its only been 26 years!) ) and one for my Medical Sales Business and 4 Jake’s Sake (a charitable foundation I am the trustee for), other related health and school paperwork. When you have a kid with a disability and an IEP at school you have a VERY LARGE amount of paperwork. And don’t even get me started on my Mass Health file…Oy my head! My favorite folder is called the Atta Boy file, which is all my complementary info from others over the years that I look to often to realize how damn good I am at what I do! Seriously, keep that shit and look back at it when you doubt yourself, you likely have a lot to be proud of! I have to do a major clean up every Monday morning, and I do lots of shredding and recycling! Buy a label maker, and label the shit out of everything! This way you can even direct your husband to find something in the office! 🙂 I have a little office, but I sure pack a lot of stuff in here!!! When I am organized in my office, it helps me remain calm in the mist of all my chaos! Which reminds me, I have some filing to do! YUCK!!

Please share what you do to help you keep organized, I am always looking for new and better ways to stay organized and give myself more time to sit out back with a glass of wine! 🙂 Ok, off to finish my to do list for the day and be DONE with it!.

Disclaimer here, I am not posting this to single anyone out. But when things don’t directly affect you its easy to sort of tail off. I guess it is just how I have been feeling with this upcoming fundraiser…

When Jake was first diagnosed with Duchenne in 2011 just before his 8th Birthday the outpouring of love and support was amazing! Our first muscle walk we had over 80 people walk with us and we raised a ton of money for the MDA. The second year was pretty much the same. As the years go by you notice that people can’t make it to your events and sometimes even wonder why you do so much fundraising. I guess when it’s not your kid with a life threatening disease its just easier to forget. And I get it we all have lives and we never expected people to come hold our hands all day and still don’t. I had a conversation yesterday and we were talking about how at first I had anger in my heart and thought why? But I had to take a step back and let that shit go…it doesn’t help anything. And really people do love us, and life does get crazy and things happen! When we help other families get the equipment they need and see the smily faces of those beautiful boys happy to be able to get around it makes all the CRAP worth it. Doing for others is never a bad thing and for us it helps us deal with this shitty disease. Doing for others can never be a bad thing…ever! I put a video together the other day and after looking at all those faces of those we have helped I realized that no matter who comes or the outcome of our next fundraiser that we ARE doing good things and will just continue to do so. I laid it all on the table and did the best I could do and I know it will be a success! For those of you who are asking themselves what can I do for people dealing with disease? If you know someone who is dealing with this call them, ask them how they are doing. Send them a card or email that you are thinking about them. Just be there for someone in whatever little way you can. And for the love of God don’t bring lasagna! 🙂

Sometimes I think that because we are so positive and just get things done people don’t think we need anything…and really we do have all we need, but compassion and caring can really go a long way to peoples hearts. I am not saying by all this that we are not supported, because we are! But sometimes you get the most support from who you wouldn’t expect! I know that I am not alone with my feelings…most of you can relate. And I for one will try better to have more compassion and be more supportive. I never want to be over a casket with regret for not being there…do you?

Not even sure where to begin with this one, but I have been thinking about this topic for years, but the other day it was a burning subject when I had not heard from my addict in a few days and no social media posts from him. My son Cletus is 29…almost 30. He was my toughest birth, requiring 4 hours of pushing to get him out. I guess God may have been in some way preparing me for the future. He walked early and was an amazing athlete, he was good at all sports. He was smaller as a kid and really excelled at gymnastics, but when it was all girls and him, he decided football suited him more. And again he was amazing, carried off the field by his teammates many times. His HS football career was tough as he went to a small Catholic HS which meant only one team not separated by Varsity and Jr Varsity. But he was still played well, the other team would never see him coming. He has such a kind heart and always will to help those who needed a lift up, but never so good at lifting himself up. He started cutting himself around 15 and I took him to a few therapists who all said he was fine, which clearly he wasn’t. His Dad and I did not get along very well and there were a few traumatic scenes I wish he didn’t have to see, but I guess we all have trauma in our lives at some point. John his step Dad was an amazing father and they did lots of things together. Our house was a loving one. High School was tough as he was really hard to live with, he was very disrespectful and just a completely different person. He kept to himself and didn’t seem to care about his appearance and was just cranky and tired all the time. Later I learned those were GIANT red flags, but it takes time to really see them. He became a person I couldn’t live with and we had to ask him to leave. He made home a crappy place to be and dealing with Jake and Duchenne I had to choose him or me. I chose me… and sometime I wonder if that was the right thing to do…but its in the past now. Between his Jr/Sr year of HS he decided to join the Army…that will make him respectful right? He made it though boot camp and when we went to his graduation he was a completely different kid. Phew I thought…dodged that bullet. However things started to go down hill again fast. Many times I thought I misplaced money and one time I found a transaction from my bank at 1am…if you know me and John we are never up that late. I called the bank and they looked at camera footage and yup it was him. I knew nothing about opiates then, but sure was schooled quickly. I could say wrong crowd or a million other excuses, but he really made the decision to get into that world. I asked him to leave then, not really sure what else to do. Then he came back and stole pretty much all the jewelry I had, and trust me it wasn’t much. He also stole other things and I went to the police and had him arrested. That MUST be his rock bottom I said to myself, man was I and still am I wrong. Not sure there is a bottom for him yet. I remember him calling me when someone bailed him out and told me I ruined his life by having him arrested and what kind of Mother would do that. This Mom did it and I would do it again. A few years later his sister was getting married, such a wonderful time in our lives we were so excited for the event. Cletus seemed a bit better and was asked to be in the wedding. I couldn’t wait for this wonderful day. A few days before the wedding Cletus was arrested and drug tested and didn’t pass. This meant while we were celebrating a wonderful day he would celebrate in jail. Consequences right? I sent an email to my family and told them the scoop, but I wanted her wedding day to be all about her and for no one to ask any questions. It was a beautiful day, but I did have to step out once for as happy as I was for Katelynn I was sad for Cletus. Well a few days after we went into our first program…and its been a blur ever since. Cletus has lost touch with his family, but sometimes we see hope and we see several months of clean time where he was a joy to have around and seems happy! Heroin is a demon mother fucker I am here to tell you. It doesn’t care about anything but getting high.

He met a girl and was in love, they were basically 2 drowning addict victims trying to save each other. They were together for a while and she had a daughter that she lost custody of. Her story was a sad one, but I won’t get into that now. Apparently they were engaged…and could not take care of themselves never mind a relationship. November 29, 2018 Tamica died of an accidental overdose. I say accidental, because I really believe these addicts don’t want to die, they just chase the dragon and eventually its either jail, death or clean. All parents pray for clean, but its a tough battle and many just don’t get to that. I was in Florida, if you reminder from my last blog, and chose not to rush home but to finish out our vacation. Coming home was hard, he was so broken and couldn’t stop crying. I believe he suffered some PTSD being the one who found her dead. I don’t think he will ever get that picture out of his head. This HAS to be rock bottom right…nope. He lived with us for a few weeks and continued to use, so we had to drop him off at another program. He is currently in a sober house, knowing he needs to work on himself. But I am not sure he really is…I guess time will tell. I ask that rather then judge an addict harshly, have pity on their tortured soul and pray for them. No one wakes up one day and says you know what? I want to be an addict, I want to loose my family and everything and everyone I ever loved, they just don’t. Getting clean is easy, living sober is hard. Thanks for listening and I hope and pray that none of you ever has to live through this. One word of advice from an old meeting…You didn’t cause it, You CAN’T control and and you sure can’t cure it. I have received lots of advice over the years from people who have never dealt with addiction, and do they not think I would try ANYTHING to get my Cletus back? Pray for addicts and their families, we could use all the help we can get. I gave my addict to God, I hope he can save him, because try as I might I sure can’t.