I am a very lucky man – I’ve got an amazing wife and am the father to three wonderful kids. Lylli was born on Halloween in 2008, Gracie was born November 2010 and although she only lived for 17 months, she will remain as much a part of this family as the rest of us, and Mickey Gray, our first son, was born in June of 2012. I’m not going to say that life has gone exactly as I would have wanted, but it is a good life and I am determined to make the best of it.



This blog is an attempt to document my quest to become a dad that my family can be proud of.






Wednesday, December 4, 2013

SteveO's LIGHT


Many of you know that my good friend Steve has been struggling this week.  If you are not familiar with his story, please see the following Caringbridge site:  www.caringbridge.org/visit/stevemoll

I was very happy to see the turnout of people putting SLP blue lights outside of their homes to show support and encourage that to continue until he comes home. 

 

I have worked with an artist to design a t-shirt continuing with the blue light theme.  The printing shop has setup a web store for those interested in purchasing.  All proceeds to be donated to the Moll Family.  

 

The web store is not super advanced, but we recently did this for another effort and it worked great.  A couple of things to keep in mind when ordering:  To get the best rate on the shirts, which will result in more money to be donated, they all need to be printed at the same time.  That said, the web store will be open from now until January 3rd.  At that time, Rebyl Sports will then print up the shirts and I will pick them all up.  From that point, delivery is up to me (delivery or pickup will make them more money than if I need to pay for postage, but  have priced accordingly so however you prefer).  I will try to get them all in the mail or arrange delivery/pickup within a week of picking them up.  I’m sorry that I couldn’t get this all done and delivered by Christmas, but a hand-made gift card for one to be delivered later would still make a great gift – lol. 

The shirts will be priced at $18.  There will be two options, a standard T-Shirt or a more fitted ladies version (if the ladies version is not there yet, check back, they are still working on adding it, but I want to get this out there ASAP).   


Please consider sharing and passing this along to anyone you can think of that would like to support or just get a cool shirt

Thank you for supporting The Moll family during this time.  I know first-hand what it means to know during times like this that there is a strong network of friends and family there to support you.

Any questions, please contact me at delaney44@msn.com


Wednesday, November 21, 2012

A Life With Grace

I had limited exposure to people with Down syndrome, up to a certain point, in my life.  I have a couple of amazing people in my extended family, but admittedly had not take the time to get to know them like I should have.  My wife is a special education teacher, so as I got to know her, I was exposed to some of her students, etc.  Her good friend/co-teacher's son was born about 6 months after we started dating.  I went with Carrie to visit them in the hospital.  Will was beautiful.  I think it was seeing someone with Down syndrome as a newborn baby that sort of started to change my thinking.  Even earlier in our courtship, before there was ever thought of us turning into a long term thing, Carrie had been exploring the idea of adopting a little girl that she knew with Ds.  It wasn't to be – in the end, it turned out that the girl didn't need a home after all.  As things got more and more serious, Carrie informed me that some day she wanted to adopt a baby with Down syndrome.  She repeated this often, and I heard her, but admit, most of the time, I ignored her.  While we were engaged, we spent quite a bit of time with one of her students.  She was from a single parent home – her young father was admittedly overwhelmed with raising his daughter.  She would occasionally spend a night or two, but there were a couple occasions where she spent a couple weeks.  I fell in love with that little girl – she was a little spit fire and knew how to charm a room.  Everywhere we would go, I was amazed to see the smiles that she would bring to everybody's faces, not to mention mine.  We even spoke seriously about adopting her if she ever needed a permanent home.  For two years, I played Santa Claus at the Miracle League Christmas party.  For many of these kids, I was the first Santa they had seen in person because a crowded loud line at the mall can be a bit too overwhelming.  I really loved doing that and for the most part managed to keep my beard and glasses intact.  But I do have to say, the most memorable kids to sit on my lap and tell me what they wanted for Christmas were the kids with Ds.  Between the people that I'd met, time spent at Carrie's school events, Miracle League games, and  Down syndrome walks, I was no longer as afraid of Down syndrome as I had been in the past.  Don't get me wrong, I was certainly not yet in agreement with Carrie when she repeatedly reminded me that someday she wanted to adopt a child with Down syndrome.  My standard answer after we got married was "Let's just see what happens naturally" – of course this was in attempt to buy time, hoping that after having some kids, she would forget her plan.  Never in a million years did I think that we would actually give birth to a child with Down syndrome.  I mean what are the odds that she and her coworker, both special ed teachers, working side by side every day, would both give birth to kids with Down syndrome.  We should have known right away that Gracie was an odds beater, because on November 22nd 2010 – exactly 5 years to the day after Will was born, we became the proud parents to a little girl with Down syndrome.  The days leading up to her birth were much different than most families – early on she was given a 3% chance to be born and her diagnosis of Down syndrome changed her odds to 50% -- her heart was pretty messed up, so that was our main concern.  We knew beyond the shadow of a doubt that if we could get through the journey needed to get her heart fixed, the Down syndrome part was going to be a piece of cake – a lot of parents are faced with fears and tears when they become parents of children with Down syndrome.  We knew there would be challenges, but we were so excited about and determined to get that chance.  We love that little girl as much as any parent ever loved their child – if I could change places with her right now, I would without the slightest hesitation.  I can proudly say that we did everything we could to give that little girl the best chance at an amazing life – We sought out the best doctors, surgeons, and the best therapists – She was so beautiful and bright - So much more than just a sick little girl – so much more than what most people got to see.  Having Gracie  has changed me more than anything in my life.  I cannot begin to describe to you how proud I am to be able to tell you that I am her father.  She is and will be with me through every remaining step of my life and will continue to be just as much a part of my family as any of my other kids.  I can't begin to tell you all that she has taught me.  She has made every single person in my family a better person by having her in our lives.  She taught us so much about courage and strength and what we are all capable of.  We could never replace Gracie in a million years and would never want to.  We miss her every second of every day and have so much to be thankful to her for, including giving us that distinctive status of becoming a family with that extra chromosome – and if I can say, a damn good one.  It's because of that, I'm excited to say that we have started the process and paperwork to find and adopt a baby with Down syndrome.      

Monday, November 19, 2012

Tangled Up in Gray

It's gotten way too late on this Sunday - everybody else has retired for the night.  I turned the TV off awhile ago, but I just can't get myself to stand up and go to bed – I admit, I dread Monday every weekend, but I've especially been fearing this week for some time. As I sit here staring at and talking to the pictures of my daughter on the wall under the shelf with her remains next to the electric candle that we keep going 24x7 in her honor, I'm thinking about how earlier in the evening I was looking over my wife's shoulder as she put the final touches on this year's family Christmas card.  Since May 1st, the toughest question I am asked is "how many kids do you have?" – it was such an easy question before that day.  There are so many things that changed and have become more difficult the moment we lost Gracie. I'm also thinking about the time we spent at Target today -  Despite the fact that we haven't yet even had Thanksgiving, the store was filled to the brim with everything Christmas – I'm usually all about the commercial aspect of the holidays – I love getting and giving presents, drinking hot butter rum, and eating way too many cookies, but this year, everything is different – and I guess now that I'm thinking about it, that's kind of saying a lot considering last Christmas was spent in Boston.  Our Christmas dinner was a hodge podge of microwavables and snack foods bought from behind the desk of the hotel lobby – Santa was so kind as to deliver gifts to Gracie's room because Christmas was only a few days after her final heart surgery – The surgery that finally fixed her heart – my sweet girl Lylli, still so happy to unwrap her gifts sitting on a window bench seat, silver bells and a three year olds carefree Christmas morning replaced by limited visitation surrounded by the beeps and alarms of the ICU - watching Lylli propped up on a stool leaning against the side of Gracie's bed happy to be watching cartoons with her sister on the goofy tv that resembled a dentist light hanging above - But the most important thing was that we were together – These last three holiday seasons have taught me more than any previous about this life.  Gracie was born in November, we got out of the hospital the day before her first Christmas, we weren't able to bring her out to see our family and friends that year.  This would have been her third Christmas, but the first one where we weren't dealing with pending or recovering from surgeries – the first one where we would have brought her out to see everyone.   I was really looking forward to all of my kids having a normal routine this year and will always regret that she never got to experience one.  Speaking of Thanksgiving day this Thursday, it would have also been Gracie's 2nd birthday.  A day that has been causing me more and more anxiety every day as it approaches. I will do my best to make it a happy day, but I'm afraid it's going to be a tough one.  This blog post was not meant to be a whoa is me sympathy plea – I wrote it because the best thing I can do to honor my daughter is to share what I have learned from her, so to anyone that will listen – As you prepare for your turkey day celebration and the pending holiday season, I just want you to try to remember that it's not about getting the most expensive Barbie Castle that you can find or about how many events you can fit into each day, it's a time to give thanks and enjoy the greatest gifts of all – your kids, family and friends.  I've always said that the toughest lessons you learn in life, you learn after you can use what you learn from them – I guess that is true for the incident that taught you that lesson.  But life is full of "If I knew then, what I know now" moments – and I'd like to suggest something based on what I've learned,   Take some time over these next days/weeks/months, a real moment to sit with your kids/loved ones and hold them and tell them how important they really are to you and to tell them how proud they make you – take a step back and really feel how blessed you are to have them to share times like these with because you truly never know what tomorrow will bring and if God forbid, that day comes where they are no longer around, you will regret every single kiss you didn't choose to give them.

I wish everyone the happiest Thanksgiving and holiday season 

Saturday, August 4, 2012

Been a Tough Week



I got this thing in the mail today from the funeral home.  It told me that for many people, the initial shock of losing someone doesnt hit with the full effect at first, but after a bit, it hits you like a truck.  The author of the pamphlet even said that he recommends to businesses to let someone come back to work quickly after a loss, but to be prepared to give them some time away in a few months.  I found myself there this week.  The loss of my daughter hit me very very hard.  that coupled with a job that I don't like and the fact that despite busting my ass in the gym, I was mistaken last week at my work picnic for a very big and unhealthy guy at my work put me in a tailspin.  I went to my family reunion last weekend and we participated in the first annual Gracie Delaney Memorial 5 mile run/walk.  It was amazing but was tough -- I'm not complaining about it at all because it meant so much to us and I know this is the pain that Carrie and I need to go through in order to heal (or "grief work" as my wife's friend that also lost a child says) -- My wife did a Caringbridge entry for Gracie's site on Wednesday because it was the three month anniversary of her death -- she mentioned how we do have times of happiness these days, but they are all bittersweet without our Gracie to experience them with us.  I know its going to be so hard to watch all of the kids in my family around her age grow up -- We were so much looking forward to watching our Amazing Gracie defy stereotypes and knock down walls.  Carrie also mentioned something in her post that I really liked -- if losing Gracie is the price we have to pay to be able to say that we are her parents, then so be it -- The proudest thing in this world to me is that I am Gracie's Dad.  To be able to say that is well worth my pain and whether she is alive or dead, nobody can take that fact away from me.  Reading that pamphlet from the funeral home today made me feel like I'm not alone and that its normal for some to take awhile for the real pain to kick in, I'm not going crazy --- its just something I have to go through. 

I took the week off from the gym - I got an email from one of the owners of FXB asking how I'm doing and how he can help -- You know that feeling that you get that tells you to quit sometimes - as an athlete, the more you train and get into better and better shape, it gets easier and easier to suppress that inner voice, but when you are out of shape and struggling, it can sometimes be louder than any music they pump through the speakers at the gym - Let me tell you, that voice gets amplified tenfold when you lose your child -- there are those moments, lots of them, when you say WTF am I doing and FTW - I truly can't tell you how close I have been to walking out of a workout several times these last three months.  I'm ashamed of the fact that I've gotten to that point where I let that voice win sometimes.  That voice won this week - but I'm tougher than that.  I'm not going to beat myself up over it anymore.  There's absolutely nothing I can do to change anything in the past and I will no doubt live the rest of my life with a broken heart -- but that doesn't mean that life still can't be great and it all starts with getting happy with myself

Monday morning is 40 days before my 40th birthday.  It's on!
 

Monday, June 4, 2012

Smells Like Updog in here


I should just start every post after a certain amount of time between posts by saying that I, once again, am at that point where I don’t even know where to start.  May 2012 was the hardest month that I’ve ever had in my life.  I started the month by saying goodbye to my amazing Gracie (and will come back to post about that when I’m ready).  We had a celebration of her life on Friday May 4th – a beautiful afternoon in the park (the same pavilion where we were married).  Hundreds of people stopped by to say goodbye to our girl – it was everything that we imagined.  The day was kind of a blur - there were so many people to talk to – but I noticed the obvious absence of a good friend.  Jayme was in our wedding in 2007 – I have decided to not post pictures of that day in this post because he was bald that day due to cancer treatment and I know he was uncomfortable during that time – So just over 5 years ago, he started his battle with brain cancer.  After the initial radiation/operation/battle they had everything held at bay.  The sensitive location made it impossible to remove the tumor, but they were optimistic that they had it under control – he followed up on a every so often schedule to check to see that things were OK and then awhile ago, they found more tumors.  I can’t say that I know all of the details and am kind of ashamed to say that – I guess I’d been so caught up in everything that we had going on with Gracie in the last couple years, that I didn’t dig too deep when I spoke with him.  I admit, due to my priorities, I took a step back from all of my outside relationships.  We exchanged emails and went to lunch several times in the last couple years – he was not the type to burden you with his problems.  I admire that about him – I am in a lot of ways, the exact opposite – people know when I’m going through things.  I guess I’m a drama queen.  I would always ask how he was doing, he would go into a little detail and then quickly say “but that’s nothing compared to what you are going through with Gracie” and turn the conversation back to her.  I would respond with “that’s not true”, but I didn’t press it at that point, because I knew he would rather not go there.  What a wonderful man – he knew he was dying, but didn’t want me to worry about anything more than what I already had on my plate.  Some people are best known by the things they say and people like me apparently try to get as many words out as possible – you know, throw it against the wall and hope something sticks – ie this blog.  But Jayme was the opposite – he didn’t have to say a lot.  Don’t get me wrong, he knew how to get the job done.  He single handedly grew a division of a company with no presence in the area into a very successful business.  He was a harsh negotiator and all business when he needed to be, but that had a time and a place – the rest of the time was using himself as the butt of a joke.  Where some attempt humor by talking, Jayme was the master of silence – he was one of the funniest people I knew and thrived on making people think he was serious when he wasn’t – someone at his funeral talked about his love of putting on socks with sandals and a “What you talkin’ about Willis?” t-shirt and then walking up and down the Vegas strip making people think he thought he looked good.  I had tried to call and text him a few times in the weeks before Gracie’s death and had not gotten a response, when I didn’t see him at Gracie’s celebration, I asked a few others that were close to him and they hadn’t heard from him recently either, we came to the conclusion that something had to be up – The next day, I started attempting to prod everyone that might know for more info and as suspected, one week after Gracie’s funeral, Jayme was put into Hospice.  I went to visit him on Saturday, May 12th – he was weak and very tired.  A few of us hung out in his room for a couple hours, Jayme waking up once in awhile and adding in a one word response before falling back to sleep – We proudly continued our conversation of goofy stories all knowing that he could hear us and would appreciate the laughter as we reminisced about old times – When I left that day, he was pretty much sleeping, I crouched down next his bed and told him that it had been a good run, that I loved him, and asked him that when he got there, to take care of my girl.  I didn’t go back to see him before he died two weeks later – I regret that I didn’t go back, but I said what I needed to say and didn’t want to fuss over him – he wouldn’t have wanted that – OK, I admit, it was just too much for me at this time.  This past Saturday, I got the honor of being one of the pall bearers at his funeral.  They sang Amazing Grace at both the funeral and at the Cemetery.  I believe it was his way of letting me know that he indeed is with my girl and will make sure she is OK until I see her again someday.  It was a beautiful funeral filled with beautiful tributes from his closest friends, but was a very difficult day - I hope he knows what he meant to me – I will miss him very much.

Monday, May 14, 2012

Tough One Today


After a long sad Mother’s day, I headed to bed a little after 10 pm last night.  It was later than I would have liked given my planned 4 am wake-up time, but I just couldn’t make my way to bed because it meant that today (Monday) would get here sooner – that same sort of logic you use when you’re a kid. 

Once I finally got there, I noticed my not so wonderful neighbors felt it ok to let their kids/grandkids that show up from out of nowhere every few weekends yell and scream late into the night.  But even without the added noise, I’m afraid I would have had a tough time falling asleep.  I have so much on my mind these days – I battled the anxiety that today is my first day back at work since Gracie passed away.  It’s so hard to be here pretending that I’m still not devastated by the loss of my sweet girl – I really miss her.  It’s a pain that may dull over time, but losing her has changed me forever.  Despite being worried about going back to my office filled with pictures of her, I was more worried about being away from Carrie today – this is tough on me, but as the mom, much tougher on her.  I don’t feel like I did her justice on Mother’s day – I can’t convey to everyone how amazing of a mother she has been to our girls – I know what people have seen from afar has been amazing, but let me assure you as the closest one to her during Gracie’s whole journey that the tireless and thankless things that she did every single day were even more amazing than it would appear – I am as proud of Carrie as I am of Gracie.  We are working through things in our own ways, and I try to give her space, but I do prefer to be close in case she needs anything from me. 

To add to my already spinning head as I tried to fall asleep, I couldn’t help but think about my good friend who I learned was moved to hospice on Friday.  Several of us had left him voice mails and texts recently and hadn’t heard back from him – he was diagnose with a brain tumor 5+ years ago, the treatment went well and for a few years things were calm, but the last year or so they found some more growths and despite his character to not trouble others with his issues, it was obvious to many of his friends that things were getting worse than he lead us to believe – When I didn’t see him at Gracie’s funeral, I knew that things were not good.  He was in my wedding and, one of the few friends of mine to come and visit Gracie in the hospital in all of her stays.  Every time we would meet for lunch, I would ask how he was doing, but he would quickly switch the conversation back to how Gracie was doing instead.  He is a good friend, a creative type like myself – we always joked about starting a t-shirt company to sell shirts with stupid sayings – we even went so far at one point as to look at a setup someone had in their basement that they used for family reunions, etc on Craigslist  – we left the place to think about it over a couple of beers and we were all set to buy it, when we realized that we loved the idea of coming up with ideas, but neither of us wanted to actually do the work.  I wasn’t close to him growing up, but in my adulthood we have become pretty good friends.  We don't see each other all the time, but he means a lot to me.  I visited him on Saturday – he was pretty out of it.  I don’t have to tell you what hospice means, but it’s evident that it is only a short matter of time.  He was sleeping when I left, but before I did I asked him that if there is such a place as heaven, to please find my girl and make sure that she is taken care of – I’m sure he heard me and I know he won’t let me down. 

With all of this going on in my head, I laid there and tossed and turned until 3:05 AM when I finally made the decision that I had to text my workout partner Chad letting him know that I just wouldn’t be able to make it to FXB this morning – I just hadn’t slept and the idea of getting up in 55 minutes and facing today’s kickboxing workout seemed impossible at the time – of course now I regret not going but just I just didn’t have it in me today – I know a tougher man would have sucked it up and been there, and I’ve tried very hard to get back to my routine, but I’m afraid, with everything going on, I’m not quite ready.  I’ll be there tomorrow though for legs and abs - I can only take things one day at a time right now.   Sometimes I think I’m not sure if I would’ve started this if I knew all that was going to happen during this time, but then I realize that for some reason I was drawn to that place and the added support and stress relief it is bringing me could not have come at a better time – without the structured program, I’m sure I would be in an unhealthy spiral, but for the most part FXB has been keeping me positive and on the right path – to me it’s not about the 10 week contest – I lost my chance at that a long time ago, but it’s about the lifestyle change, and remembering more and more each day how much better life feels when I am healthy – but most importantly for me right now is the daily reminder that when things get tough in the gym (and they do daily in FXB) as in life, as bad as you want to give up and quit sometimes, as long as you push on and keep trying and working hard, things will be OK. 
Love ya 12

Thursday, May 10, 2012

Words from Gracie's Celebration

I was emptying my pockets from that day and found the words I spoke at Gracie's celebration of life -- I wanted to have a record of what I said before throwing the printed copy away, so I am including them here:

 

Last time I prepared something to say in front of a group like this was a year ago as we prepared to go to Boston.  I came up with pages of things to say about our journey with Gracie up to that point – we were very scared, but at the same time, very hopeful – this time was much harder, believe it or not, I'm kind of at a loss for words. 

 

We want to thank you all from the bottom of our hearts for sharing in the journey with our Gracie.  I can't adequately convey to you how proud we are to be able to say that we are the parents of that little girl.  It is overwhelming to us to see all of the people that she impacted in her short life.  It's impossible for me to put into words what she has taught me.  She has made me a better man.  As cliché as this sounds – At night, in the sky there are millions of stars – most of them you can't see and the ones you do, look like they're staying in one spot – some brighter than the others, and once in awhile if you're lucky enough to be looking up at just the right time, you will see a bright star streak across the sky and before you know it, it's gone – often gone so fast that you are unsure even of what you have just seen – I know I'm biased, but I believe that Gracie was one of those shooting stars.

 

Many of you had never met her in person and I'm sorry you never got to see the Gracie that we knew.  She was not just the miracle baby hooked up to all of the tubes and wires that you saw in the pics from her hospital stays, but was a smart, funny, and charismatic little girl that we were so excited to share with everyone.  For those that didn't meet her, we didn't want your only memory of her to be in a funeral home in a coffin, so I ask that you take a look at the many beautiful pictures of her that are here today – She truly was as beautiful as she was strong.  I have needed to remind myself of her strength a lot these last few days and will continue to use that as the source of my strength in the difficult days, weeks, and years to come. 

 

As difficult as losing Gracie is to us, we are very proud to be able to say that we tried everything we could to give her the life that she deserved.