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Our Home Has a Name

Last July we moved into our dream home on 10 acres.  We have an ever changing animal count, but today there is 2 horses, 6 chickens, 2 dogs, 2 indoor cats and 7 barn cats.  It's my goal to fix up the old barn and use part of our 6+ acre field to create a riding arena where we can ride and maybe someday have riding for kids with disabilities to honor Gracie.  Now, I just need to win the lottery and we'll be all set!!

7 years

Today and tomorrow each year are always tough days – it is hard to believe that early tomorrow morning will mark the 7^th anniversary of the day we lost our Gracie.  I always feel sad on these days and in an odd way, giving myself permission and purposefully being sad, reminds me of how important she still is to me.  As a parent that loses a child, you get-by by forcing yourself to become numb and you spend a lot of extra energy forever wondering if you should stop yourself from being happy when things are going well because part of you just wants to be sad forever – Its strange to say, but part of me feels guilty to be happy.  However, I also know that is no way to honor my girl, so I try to keep things together when it comes to Gracie most of the time and give myself permission to be sad on May 1^st every year – And somehow writing this out and sharing it helps me although I’m sure it also illustrates some alarming shortfall that I have to need to do it, but I frankly don’t care.

 

When our first born, Lylli, was a baby she caught RSV and had to spend a couple of nights in the local hospital.  I remember how scared we were and how we freaked out when her Oxygen level got in the low 90’s and how they finally brought a bed into her room because they busted Carrie crammed into her crib sleeping with her too many times.  I guess they figured the risk of her falling out of a bed onto the floor was less than the risk of being smothered by Carrie (Although after what I’ve learned from watching Carrie as a mother to Gracie, I know that laying there crammed in with Carrie was the safest place Lylli could’ve been).  We were so scared and I’m certainly not discounting those that have had a bout with RSV with your typical child because it really is scary regardless.  I will say however, that it’s crazy how a parent’s perspective can change once they live with a medically fragile child – For reference, Gracie, until her heart had 4 chambers, lived her life with her Oxygen levels in the 70’s.  Mid-April 2012 Gracie had a follow up appointment with her cardiologist Dr Hills who noted how amazing her heart looked.  We did it! All of the traveling and surgeries and ignoring those that said it couldn’t be done was worth every second – Our Gracie’s heart was whole and stronger than ever.  However shortly after, she caught a cold and on April 21^st Gracie was admitted into Minneapolis Children’s hospital with pneumonia.  I was reading the journal on her Caringbridge site and after going through all that we had with her, the journal entry noted how it wasn’t a big deal and that we were excited to get her home and joked about how we would someday sit with her and read through all of the entries to show her how much of a miracle she was. 

 

We had been through it several times before – Carrie, Mama bear, stayed with Gracie around the clock to make sure she knew that her Mama was always there.  That last stay was amazing because Carrie was 36 weeks pregnant with Mickey and would still stand on her feet for hours over Gracie in her bed so she could hold her hand or console her or whatever she could do to make it easier for our girl.  My job was to go to work and take care of home and shuttle Lylli back and forth to the hospital each night so we could have dinner together as a family.  After dinner, Carrie would spend some time with Lylli in the Ronald McDonald house while I spent some time upstairs with Gracie.  That was the routine almost every night, except for on April 30^th.   Gracie had improved enough to be taken off the ventilator but as often happened after extubation she was very crabby.  Carrie didn’t feel right being away from her for any period of time that day, so since I had to take care of some things around the house, we decided it would be best for Lylli and I to stay home that night and have some Daddy/Lylli time.  Later that evening, Lylli and I were able to skype with Carrie and Gracie.  Gracie was doing a goofy little thing similar to how a kid kind of hiccups or catches their breath with a small huff-huff when they are trying to regain composure while they are crying.  It was a bit odd, but was so much better than seeing her on a ventilator.  I often feel guilty for not going to visit her that night, but at least we got to Skype so Lylli and Daddy could tell her we loved her.  As we ended our Skype call we agreed we would keep our phones nearby for any updates on either end.  I can’t remember exactly what we would say when we would get off calls during these times apart, but it was something like “You take care of that one and I’ll take care of this one”.  Knowing she was there with Gracie during her many hospital stays made it possible for me to function outside of the hospital and I hope she felt the same about me taking care of the outside details.  Without her, there is no way I could’ve done things like flown home from Boston while my daughter was on a ventilator.

 

We got off Skype and I read Lylli a story and tucked her in next to me.  She was always so excited that on the nights when Gracie and Mommy were in the hospital she got to sleep next to daddy, but truthfully, she was the only part of my whole world that wasn’t away in the hospital so it likely helped me more than it helped her to have her right there next to me those nights.  The next chain of events play way to often in my brain like a movie – Sometime after midnight I got a call from Carrie saying that Gracie was not doing well and they were working on her and I better get there ASAP, that she crashed and they were working on her.   I quickly woke up Lylli and told her how forgetful daddy remembered a meeting that we were supposed to have at the hospital and that I was late.  I wrapped her up in a blanket and had Carrie call her mom to meet me there.  I swear I drove from Coon Rapids to Children’s as fast as that car would go but it still felt like a two hour drive.  I remember Lylli being confused and asking lots of questions - I think I even told her at one point that Mommy really needed her glasses to read something.   I’m sure I was not doing the best at hiding how scared I was but I was trying anything to not freak her out as I was screaming inside!  I got to the parking garage where I normally park and ran to the door, since it was that early in the morning, it was locked.  I remember the feeling so vividly as I ran carrying Lylli in her blanket as fast as I could down one flight after another of stairs trying to open the doors on every floor until I ran out of doors and was below ground – We made our way outside by running up the down ramp and somehow managed with her in my arms to climb up a retaining wall and forced my way while covering her up through a bunch of bushes in a flower garden and ran across Chicago avenue through the front doors of Mpls Children’s hospital.

Carrie’s mom was there waiting for us, so I handed her Lylli and I remember fumbling through my wallet to find my license to get through the guard, but then finally saying, you know what I don’t have time for this I need to get to my wife and daughter – I’m not sure if I threw my license to him or my mother-in-law, but nobody stopped me as I ran to the elevator.  I went up to the Cardiac intensive Care unit where Gracie was and I remember hurrying around the corner and seeing Carrie standing there scared outside the wide open doors of her room while people frantically ran in and out of it.  Carrie looked at me and said “I can’t tell them to stop”.  I looked in the room and saw a bunch of people frantically trying everything they could to get her back.  Then I looked back next to Carrie at Dr Kendra - I don’t remember her whole name, but feel the need to personalize it a bit because she was much more than just a doctor, she was an intensive care doctor that  we were very thankful for because she had saved her life in the ER on a previous visit.  I asked her (more like told her) “ she’s going to be OK, right?”  I will never forget the look in her eyes when she told me “No”.  At that moment, it became very obvious that they had been doing CPR on her since the phone call with Carrier telling me to get there and I’m pretty sure most of that time was for us to make sure I was there with Carrie before they stopped.  The hardest thing I’ve ever had to do was walk into that room and say “Hey guys, thank you, but that’s it – Please stop”.  One by one, people started clearing from the room.  They took Carrie into the room next door while stood over her shaking so bad and started pealing wires off of our girl.  The nurse helped me wrap her up in a blanket and I carried her into the room next door where Carrie was.   We were both in shock.  I remember standing on one side of the room holding her so close, rocking back and forth and patting her bottom like I would often do to sooth her.  Carrie and I spent some time with our baby and then we had to hand her over to a nurse for the last time.  And that was it, we were done, she was gone – it was time to go home.  Since we had been there for about 10 days, we had a bunch of stuff there. I asked the nurses to bring our stuff to the front door for me to pick up and Carrie and I slowly and in shock made our way to the car.  I drove like a robot away until we realized we had to go back to the front entrance and pick up our stuff.  I can’t remember if a word was said on our long ride home.  I just remember getting home around 4 am on May 1^st without our girl and realizing that our lives would never be the same. 

Not a day goes by that I don’t think about Gracie - Not a holiday or life event or first time experience by one of our other kids passes without a little pain wondering what her same experience would’ve been like.  She continues to be very much a part of our family and I miss her every single minute of my amazing life.  I know we are very blessed, but today and tomorrow, I will be sad. 

 

What They See

Wow – It’s been awhile since I’ve written anything on this blog.  I don’t know who followed along before, but if you did and are still around, how are you doing?  Long time no see. 

 

Been doing some thinking lately and decided to share.  I’ve been reminded the last couple of days that it is so obvious how body image and self-esteem is very much influenced by how parents act.  It has also become obvious to me that there is no need for a parent to apologize or negative talk about anything when that parent is trying.  Today was “Butterfly Day” in my daughter’s 1^st grade class (or however you say that in Spanish? Dia de something or other).  Mom left for work early and I have the luxury of working from home most days, so I was tasked with preparing Lyl for the day – not much for me to do anymore now that she is 7.  She came to me with a Ziploc bag full of colorful broken Halloween makeup and asked me to help paint her face like a butterfly.  It’s going to be almost 90 degrees today, so she was wearing a pink bedazzled tank top and flowery shorts – it’s kind of one of those racer back tanks, which allowed me the space to draw some wings on her shoulders/upper back – these were obviously drawn by Daddy.  I followed it up by a butterfly on her face and some pipe cleaners attached to a headband in an attempt to replicate some antenna’s.  As I told her OK kiddo, it’s not the greatest, but I tried, she walked to the bathroom to checkout my handy work in the mirror and her smile could not have been wider.  It’s very obvious that I’m no makeup artist, but the lesson I learned from her smile was that it doesn’t matter.  I’m her Daddy and I took the time to help her out and she wouldn’t have it any other way.  It didn’t do either of us any good for me to obsess about how it wasn’t perfect.  That got me thinking about how I recently took my 3 year old son to see Marvel Universe Live.  I splurged and got us front row seats – it was such a great experience, Just me and the boy – a giant smiling face painted like Spiderman, light up sword, and mouth full of cotton candy as we sat up close and personal with the cast of the show.  It occurred to me this morning that I learned something from that day as well but it took me until this morning to get it.  We were so close to the action and there were times that he wasn’t so sure about the bad guys running around.  When Hulk came out, he was probably 8 feet tall and full of muscles and ANGRY – smashing cars and knocking out guys with one smash – All that it took for him to not be afraid was for me to tell him that I would protect him because to Mickey, his Daddy could handle any bad guy no matter how big or ANGRY.  I’m 5’9” on a good day (probably not even that in my Chucks) and no longer bench press 500 pounds.  Heck, with my health issues these last few years, I get winded on a brisk walk by the time I hit the corner (which is 1 house away) and would be lucky to lift my weight – But – the thing is that my kids don’t see that – they see their Daddy and to them, I am there hero and invincible. 

 

I guess what I’m saying is when I work to lose this weight from the prednisone and sedentary life style I’ve had these last few years, I need to understand that they hear me when I talk about how I’m fat or look terrible or can’t fit into my clothes, etc. – That type of negative talk does not only not do me any good, but it teaches my kids how to face things in their own battles.  They see me when I sit on the couch and stare at the TV and pout instead of making the most of my day --   It’s time to concentrate on letting them hear and see that I’m working to get healthy and that I love them and doing my best and making the most out of this life that sometimes hands us some crummy cards  – To them, it doesn’t matter if I’m Mr. Olympia, an underwear model, or a genius, I am their Daddy that would do anything for them and that loves them more than words can say and that is all they ask of me.    

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 3^rd.  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).   

link to the webstore

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

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 22^nd 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.      

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 1^st, 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