They lived…

Real talk….
Our 10th [Church] Wedding Anniversary was yesterday [April 19th]. It sucked. It was a rough day. We fought. Probably more than we should’ve. Marriage is not easy. There is no “and they lived happily ever after…”

There’s just a “they lived…”

Right now we are in an extremely difficult stage of life. Being an active duty military family is stressful; there’s uncertainty and not much control in your actual life of what your days will look like. Redeploying and reintegrating (aka coming home after being gone a year) is stressful. Moving is stressful (we just got his stuff from Korea last week and still don’t have this whole house unpacked anyways). Preparing for yet another deployment is stressful…and we have all of this going on at once. Not to mention everything that goes with all of that related to the kids…life is stressful.

I also deal with chronic illness and the demon of depression. Troy deals with his crap. Spring with all of its beautiful splendor of nature and warmer temperatures (for us at least sorry peeps who are still getting snow) is a tough time of year for us. This time of year brings back memories of the friends we lost to war. It starts to bring up memories of Troy’s incident as well as Tedy’s diagnosis. It brings up memories of the child we lost and that we still mourn for that child even 7 years later.

Old wounds were opened and salt was poured in yesterday. That’s what marriage can be like. Yet I wouldn’t change it for the world. I can’t go back in time. I can’t fix any of it. I can only move on from it. We can only grow and learn from it. These tickets showed up today.

Troy’s gift to me for our anniversary, tickets to see Ben Folds. Ben Folds sings our song, The Luckiest. Truly I am the luckiest. Life isn’t easy, marriage isn’t easy but I wouldn’t want to go through it with anyone else.

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Month of the Military Child

April is the Month of the Military Child.

Spring break for us this year fell during the first week of April. I can’t remember the last time Troy was actually home for spring break. This year and the last two years for sure he wasn’t and I feel like the year before he was either still gone or just getting home from a mission or something like that. This is a real talk post here – my feelings – my experience. I know that everyone is different and I try to meet people where they are. I know that we chose this life and continue to choose for Troy to serve in the military. Actually our kids are a big reason why he continues to reenlist; because it does allow for at least one of us [me] to be home with the kids. Yet still…pangs of jealousy hit me every time I see people post pictures of themselves with their families on spring break trips. Even if Troy was home we most likely wouldn’t be able to take trips like that. Our military service members pledge to protect our freedoms and yet they have few freedoms themselves.

I grew up a military child but my dad was toward the end of his career when I was a kid. I didn’t have to go through what my kids go through. Yes my dad went TDY [aka temporary assignments away from home] and deployed during Desert Storm; but things were different then.

I don’t mean to sound whiny or anything I just want to show some perspective to the reality of the situation. I say Daddy because Troy is the one who serves in our family but I know and acknowledge that women serve as well so the same can apply the other way around. I want to show what it’s really like to be a military child. It’s not all that the media shows. The big surprise welcome home reels are just that, highlights into this life. Most of it is trying to teach a child how to be ok with her Daddy being gone. It’s trying to teach that no we can’t just up and call Daddy whenever we want. It’s lots of maybe Daddy will be home for _____ or by _____. It’s comforting a child in those difficult times when they just don’t get it. They don’t always understand why Daddy can’t be around for a birthday or a holiday or spring break. They don’t always understand that Daddy has to leave again. Yet they cope and they are proud of him.

My tip to other parents living this military life is to acknowledge your kids feelings and to not be afraid to use counseling services. Your child may not have anything “wrong” with them but being a military child can be a big burden to bear and sometimes it helps them to talk with someone. Sometimes a professional can help you and your child cope better with all of this.

To all the military children serving in a life they didn’t ask to serve in, I salute you. I know first hand how tough it is to move and have to start all over again. Yet remember the dandelion, it’s your flower – don’t ever let anyone tell you it’s a useless weed. Next time you see one close your eyes and make a wish.

Adventures with Autism – what did you do to your hair?!

What’s in your hair?! What did you do to your hair?! Don’t put that in your hair. It’s time to cut your hair…

Hair…

I’m constantly talking about Tedy’s hair. He’s constantly putting random stuff in his hair like mulch, dirt, gobs of toothpaste, etc. Yet he HATES having his hair washed or cut. Yes he enjoy bath time but don’t you dare touch his hair!

Everyone else’s hair is fair game to touch for him though. He’s notorious for pulling hair. Even men’s hair that’s so short you think there was nothing to grab onto and pull he somehow manages to find a chunk. It also doesn’t matter if your hair is up or down when he’s upset and wants to lash out he will find a way to entwine his fingers and pull hair over and over again.

Yet he also touches hair to show affection. Especially towards Troy. He will rub Troy’s short hair and it’s like he’s telling him he missed him.

Saying people with autism don’t know how to show affection is one of the biggest myths about autism. Their love language is just different than most people and probably isn’t in a book.

Hair though is a common problem amongst people with autism. Many have difficulty having their hair cut or washed. If you’re fortunate enough to have a hair stylist who has experience in working with children with autism you’ve found a rare gem.

I’m not a hair stylist but I do cut my kiddos hair. The following links are not affiliate links, they’re just two great tools that I have found and been using for a couple of years to cut Tedy [and my other boys] hair.

Calming Clippers are basically hair cutting scissors with a blade guard that you attach on. These are very easy to use and what I recommend when first starting to cut your kiddos hair. For months I worked with Tedy’s ABA therapist to get him used to these scissors. We started out by just having them on the table and then slowly progressed to being able to use them. Patience and not being overly worried about what your kids hair looks like is key. It will get shaggy, he will have a bad hair day and anyone who judges you for it can go suck an egg. When introducing these scissors we found that Tedy likes to watch what you’re doing. He has to be able to feel like he can trust you so having a mirror present helped. Also having him “count” helped as well.

Noiseless Water-proof cordless hair clippers are first of all not completely noiseless. However, they are very quiet in comparison to any other clipper on the market. They’re also cordless [you just have to initially charge it and recharge when needed]. These clippers I highly recommend to anyone with boys, autism or not. They’re what I use to cut Mikey and Audie’s hair as well. These clippers come with a few guards and work great with doing fine cuts especially around the ears and on the back of the neck. When using them on Tedy again he likes to be able to see what’s going on and have you cut on his terms of counting. Remember, patience.

I hope you find those tools helpful. Even if you choose to not cut your kiddos hair I recommend discussing using them with your trusted stylist.

One more thing about hair…

I dyed mine blue! April is Autism Awareness and Acceptance month. I’ll be wearing blue in my hair all month long. It’s something I’ve been debating doing for the last several years but didn’t want to have to bleach my hair at all in order to do so. I used Splat and streaked it throughout my hair. Oh my goodness maybe it’s because the dye is blue but I don’t remember dyeing my hair being this messy (it’s been over 13 years since I last dyed my hair). The color is pretty subtle but the mess and subtly totally fit with the Autism Mom life. At first glance Tedy looks like a totally “normal” kid. Just like my hair now looks dark. Yet when you’re around Tedy for a bit you see that something is a bit different about him…same goes for my now blue hair.

Remember today, this month, and everyday…show some compassion – first glances can be deceiving and things aren’t always as they appear to be.

Why I wear blue

It’s been 14 years. 14 years since I saw Lauren’s [a college classmate] heart break. I grew up an Army brat but I was still fairly naive until then. I thought we would march in and out of Iraq without issue. Man was I a fool.

It’s been 14 year. 14 years since word swept through the dorms of Regis College that Lauren’s [boyfriend] Jeff had died in combat in the war in Iraq. How could it be?! Didn’t we just see him?! Wasn’t he just here hanging out with us?!

It’s been 14 years. My how times have changed. That war I so naively thought we would walk in and out of still rages on. That young Marine, Lance Corporal Jeffrey Burgess, and so many others never came home.

I only knew Jeff through Lauren, he was always so kind when he would visit her at Regis. One of those people that greeted you as if you had known each other for years even if it was your first time meeting him.

Back in College I would run the James Joyce Ramble every year, a 10K in my hometown. The year after Jeff’s death was the year they assigned names of the fallen to runners. I had written about Jeff and this race for my Rhetoric class. My professor sent in my piece to the race director and they took the time to make sure I was assigned his name. That was the first time I officially ran in his memory.

When I decided to run my first Marine Corps Marathon, continuing to run in his memory, and for all our fallen. Our fighting service members were on my mind as well since my own husband had now joined that group who raised their right hand in service to our country knowing full well that a war is still going on.

I’ve never healed from the bite that the running bug gave me over 8 years ago. My steps have grown more purposeful with each one I take. One year while running the Marine Corps Marathon I was brought to my knees as I approached a sea of people in blue holding American flags. The reverantial spirit I felt that day was like no other. I looked up who those people out there were and came across wear blue: run to remember.

When we moved to San Antonio there was a wear blue community there and we joined them for Memorial Day. I was 35 weeks pregnant with Mikey and the weather was miserable. It was humid and buggy and then it down pour rained! Yet it was an amazing day. Not a single person complained. Troy ran on doing a mile for every service member in the 4th Brigade of the 3rd Infantry Division who was killed in action during their deployment to Afghanistan the year before, a place he himself almost didn’t come home from. I knew then that wear blue would be an organization we would be dedicated to as a family.

Some how I ended up becoming the coordinator for wear blue in San Antonio. I took a break as coordinator while pregnant with Audie but I still regularly continued to run in blue and still called out the names of the fallen on Saturdays. When the San Antonio coordinator position came up again I wasn’t going to take it on again. I had too much going on. I had five kids and my husband was deployed again, I couldn’t possibly take this group on again. Yet God had other plans for me and lead me to say yes because this mission is not about me. Whenever things got hard as a coordinator or a runner I could hear whispers of this isn’t about you Liz; remember Jeff, this is for Jeff. Remember Sgt Adam Kennedy, this is for him, for PFC Barrett Austin, it’s for him, it’s for all of the fallen. It’s for all of the families left behind that you’ve gotten to know over the last several years. The tears you’ve shared with them as they tell stories of their loved ones. It’s for all the fighting.

Upon leaving San Antonio I was asked to step into a new role with wear blue, as a community lead. As I discussed the position with various friends and family members I got an array of answers but when a friend described back what it was like for her to watch me go through the wear blue mile in San Antonio and for her to experience the mile as well that’s when I knew my answer would be yes.

Every volunteer with wear blue helps keep the mission alive. Runners, flag holders, community leads, community coordinators, donors, etc…they all play a vital role in this organization and I am so blessed to be a part of it.

It’s been 14 years since Jeff died and he is truly the start of how I got to where I am today. He is why Sophia and I went out on a cold rainy morning to volunteer with wear blue. It was amazing to be on the other side of the wear blue mile and watch other runners go through. As the winds blew the flags I knew the spirits of all the fallen were with us.

I’m 60% Crazy…MCM #4

“I signed up for the Marine Corps Marathon! Towards the end of my pregnancy with Tedy I decided it would be a good idea to sign up for a marathon – Troy tells me that Bill Simmons (The Sports Guy) says something like women get 12% crazier when they have children (I’ll have to Tweet Bill Simmons to see if he’ll comment) so according to that theory I’m about 24% crazier than I was 2 1/2 years ago!

I wrote that several years ago when this blog was still in its infancy and I started a series on training for my first marathon. You can read the whole thing here and go back to 2010 if you’d like to read even more in the series. Using the 12% crazier math and multiplying it by 5, since I now have 5 kids, I’m a solid 60% crazy. I have lost my daggum mind! Here I am again, 8 years later and am officially registered for my 4th Marine Corps Marathon!

Since finding out about the MCM Runner’s Club I have had this goal of running this race at least 5 times. When we were living in Virginia and Georgia that goal seemed attainable but when we moved to Texas my dream started to fade. A couple of the years that we were in Texas I was offered bibs to run this race; however I always ended up having to turn them down because it was just too much for me. The travel alone was too much and the whole trying to find someone to watch my brood of kids was too much as well. Plus Troy was constantly gone so the training wasn’t in my heart to do either. Living in Texas was an extremely trying time for me. I was depressed the entire time we lived there and had been in and out of therapy for it. I still battle with the demon of depression but when we left Texas I felt a dark hand lift off of me. Don’t get me wrong, I made some amazing friends in Texas but those closest to me can tell you that I struggled. I’m very good at hiding my struggles for the most part. I’m very good at putting on a mask and marching on but the dark beast lingers and was very heavy the last several years.

I haven’t run a marathon since completing MCM in 2013. Since my MCM Runner’s Club dream was so faded and since some friends were planning on entering the 2019 MCM lotto I had recently decided to not enter into the 2018 MCM lotto. Some of you may be thinking – Ok Liz you said you weren’t going to put in for the 2018 MCM then how the fork are you registered?! Rush registration…MCM announced the other day that they were opening up a slim number of slots for just 25 minutes before opening up the lotto. I was intrigued and shared the post but wasn’t going to try my luck. Then this morning when I hoped on Facebook I saw another post on my feed about how Rush Registration would be opening in an hour (actually 30 minutes by the time I saw the post). Troy just so happened to be texting me at the time so I asked him what he thought and he encouraged me to go for it. Truly, if he said no, then I wouldn’t have made the attempt. He has such a strong faith in me that I often don’t have in myself. We have a ton coming up – we are reintegrating and staring down another deployment all at the same time. Yet that’s been our life for the last several years; our Army life is truly active. Troy was gone for all of my marathon training when I first went crazy. Knowing that he will likely be gone again is only a minor factor. I know I can do this. I know I am capable especially because I know he has faith in me to do so. The toughest part about completing my 4th MCM will be making sure someone is watching the kiddos the day of the event. I’m not overly worried about that either though. Our family has been amazing during Troy’s time in service. They have continually stepped up to help me still race when he’s gone. I probably haven’t thanked them properly for how much support they’ve given me. All of them at some point or another have been tasked with watching my brood while I raced, and I am extremely lucky to have them. It may seem selfish to others that I’m partaking in this event; but I need it. I need the escape. Care giver burnout from being an Autism mom is a real thing. Having this escape helps me. I am confident that the details of this race will fall into place, and I am thankful for my family support.

Here’s to reigniting my MCM Runner’s Club dream. You can expect me to post more about my training as the day gets closer. To all my other friends running MCM this year, CONGRATS – I look forward to seeing you post about your training and of course on the big day!

Happy 10 year sickiversary to me!

Sickiversary –

A made up word to commemorate the moment when you became so ill that your life took a major pivotal turning point. That you basically start a completely new life due to this. It could suck and honestly it does suck buuuuuut if we just wallowed in that suckiness of sickness then we couldn’t celebrate. My friend Julianne posted this word after her daughter hit her one year sickiversary. It’s stuck with me and I am sharing mine with you. So happy 10 year sickiversary to me!!! Yep it’s been 10 years since I started my new life as a chronic illness thriver! Yes I’m a thriver. Somehow I am not just surviving but thriving in this new life. You see 10 years ago my body thought it would be fun to attempt to kill me just weeks before my church wedding. I know I’ve told some of this story before but for new readers here’s a brief recap.

I was living in Nashville at the time but had flown up to the greater Boston area (aka home) with my sister and baby Sophia to finalize wedding plans. It was supposed to only be a weekend trip. I ended up staying about 6 weeks instead. On one of our last nights there we were at my aunt’s house and had enjoyed one of my all time favorite foods – pepper & onion pizza from one of my favorite local pizza places.

Rewind a bit – I didn’t go back to grad school after my first year there because I had some extreme health difficulties that the school had told me over and over again were all in my head and that maybe Vanderbilt just wasn’t the right fit for me to continue my studies. Y’all TMI coming up – throwing and going (you know what I’m talking about) is NOT in your head!

Anyways…so after dinner my sister said she had to use the bathroom but BAM nope sorry Nanc, I had to go first [these throwing and going things would hit me at a moment’s notice from seemingly out of nowhere]. My poor sister – you see, my aunt’s house only has one bathroom and I made it in there first and when I came out well all I really remember is paramedics carting me out of the house and off to Newton-Wellesley ER I went.

My sister probably still has the picture of me somewhere so Nancy if you do – go on and post it for good measure because it’s hilarious and is the first moment of me in my new life. My rebirth sort of photo. I was doped up on morphine in the ER and here’s what I remember…

There was a nurse who had red hair and her scrubs had flames on them and she had a scrunchie that had flames on it too and I have no clue what she was asking me something about an anal exam and my response was “rectum damn near killed him” and when she left I said “someone should get that woman some water because she’s on fire”. Y’all don’t believe me?! Ask my cousin Katie, she was there too – I was hilarious in my rebirth…probably had something to do with the morphine. My poor mother was so distraught she didn’t want to laugh but how could you not?! You see, I shouldn’t have been alive at that moment. My blood levels were so toxic and so messed up that there’s no reason I should’ve lived through it. Divine intervention is the only reasonable explanation for my survival – I believe in science and medicine however there are times when other powers, call them what you want, but other forces take over. Since I’m Catholic I believe in the power of the rosary and know that my mom said it for me the fateful night.

My body tried to kill me and I said fork you body we’re not playing these games right now don’t you understand I have to have my marriage convalidated in a few weeks?! I say my body tried to kill me because after spending a week in the hospital undergoing numerous tests and drinking some of the nastiest things out there – which none of the nurses would take shots of with me but my BFF Isabel did [I’m forever thankful to Isabel – every single day that I was in the hospital she came to visit me at least once, many times twice a day] – anyways, after all that madness I found out that I had a rare autoimmune disease. I was diagnosed with both eosinophilic esophagitis [which has become more known through childrens food allergy awareness campaigns] as well as eosinophilic gastroenteritis. Oh and somehow I had a parasite too and since I had recently had bronchitis the steroid I was on then made it take up a ton of space in my intestines – super nasty – one of those omg that’s so gross it’s so cool looking x-rays… so that had to be treated before treatment could begin for the rest of my body.

There, that’s the brief version of my sickiversary story. So here I am 10 years later and thriving through it. I have had 5 more major relapses 4 of which took place around 6 weeks postpartum and one about a month after my miscarriage. There isn’t any scientific evidence to back it up but I’m pretty sure hormones and organs going back into place have something to do with the major relapses. Luckily I have not been hospitalized since I was diagnosed; though I have had to go in for some IV treatments during flare ups. There isn’t really a cure for what I have and it’s been a lot of a guessing game. Much of my disease is food based so I have eliminated many foods from my diet but have also worked closely with allergists and GI docs over the years to do food challenges and immunotherapy as well.

I have drastically changed in the last 10 years. Depression is a demon of chronic illness. I have other things that have crept up now which are likely due to having an autoimmune disease such as: osteopenia, Raynaud’s, chronic pain (still trying to pinpoint if indeed it is fibromyalgia) and a couple others that we are still trying to figure out what’s up. I don’t share this for pity but I share it to show another part of my story. I feel like over the last 10 years so much of me has been lost with becoming a mother that the title of Mom over shadows Liz DeLise. Also, the whole Army Wife thing casts a tough shadow to live in as well. Troy is an amazing guy though – 10 years ago many people didn’t think we would make it to the altar because I had been released from the hospital just two weeks before our wedding. Yet he stood there and I bawled as he said the words “in sickness and health” because I knew at that moment he truly meant it because we had been living it.

Again, I don’t share this story for pity but to hopefully give some perspective. I truly believe that staying active helps keep my body in check. Again I don’t exactly have the scientific evidence to back it up but let’s just call it a gut feeling. Also, as a reminder that you never know what a person may be going through. On the outside I know I appear to look totally “normal” but on the inside I’m very broken still. I deal with pain on a regular basis and can’t exactly take medications to help me with it. My struggles have helped me gain compassion for others and realize that so often people are fighting things in their lives and in their bodies that we can’t necessarily see.

So happy 10th sickiversary to me – I think I’ll go celebrate with a donut.

Adventures with Autism – Why I Run

I’ve been asked this question before and I’m sure I’ll be asked it again… “Why do you run?”  My “why” has somewhat changed over the years but the base of when/how has always been the same. “What was that pivotal moment? What made you take those first steps?”  Hopefully this story will help reveal more of my “why” to you.  I got to thinking about that question more when I found this trophy while unpacking…IMG_20180215_205542

This trophy is a perfect example of the #autismmomlife…
Victory and brokenness…
I remember this race. I was 27 weeks pregnant with Mikey, our 4th kiddo [we have five total].  A year had yet to go by from when Tedy received his official autism diagnosis. I ran this race for Tedy. For our new life as an autism family. For all the struggles we faced and would face again…

I actually started running as an adult just after Tedy was born. My pull to even begin to lace up those running kicks came in the last trimester of my pregnancy with him.  Blame hormones or something but for some crazy reason I decided that I was going to run my first marathon in 2010 (the year Tedy was born) and my first step was to sign up for a Marine Corps race (at the time it was a 10K at Quanitco but now it’s the 17.75K) that would guarantee me entry into the Marine Corps Marathon.  Looking back now I feel like it was God’s way of giving me an outlet before I even knew I needed one; because God was about to give me a gift, one that would prove to be more than I could handle.  A blessing in the truest form – a beatitude style blessing; one with greater purpose in my life.  Even though I ran prior to Tedy being born I never really considered myself a runner.  He was my turning point.  Before him I was a former college athlete who had ran just because I was required to as part of my other sports conditioning.  I had done the James Joyce Ramble and a handful of other [local] fundraiser style 5Ks; just as part of this former athlete life but until Tedy was born, I was not a runner.

After Tedy was born I poured so much into my running.  I have an entire library of books now that are all about running; from how to train to memoirs of runners.  I’ve been to clinic after clinic after clinic and have watched video after video to work on my running form and improve in this sport.  The photo below is from the same race as the trophy but the year before.  This was the year that I was heavy into competing and started being on the podium at runs and triathlons on a regular basis.  This was in the midst of all the testing that led up to the fateful day when I would officially be told that Tedy indeed has Autism.  DSC_0128

That was the worst week of my life.  In just a few days I was hit with so much – Troy had been injured by an IED in Afghanistan and I received Tedy’s official diagnosis.  It’s a good thing that I had a long drive from Jacksonville, Florida (where Tedy’s team of doctors were) to Fort Stewart, Georgia to decompress and just cry and cry and cry.  I was such a ball of emotions.  I was grieving over so much – I still didn’t know all of what was going on with Troy exactly and then I began to grieve over this new life with Autism.  Yes I was grateful that Troy was alive and yes I was grateful that my son was otherwise still healthy but it was a major turning point in our lives in so many ways, all at once and it was ridiculously overwhelming.  I am forever thankful to my friend Lisa for being there for me in those days.  She made sure I got the simplest of things done like eating.  She kept me going because we still had a couple of races left in the triathlon series we were signed up for.  2013 was the most difficult year for me because of all of this crap going on but it was also a very successful year.  It was the year that I hit my 5K PR and I ended up qualifying for triathlon age group championships (though I was unable to attend because a trip to Omaha just wasn’t realistic at the time).  Dealing with all the crap in my life running was [and continues to be] my outlet.  It would be so painful as the last leg of the triathlon but it allowed me to get out so much pent up anger and emotion that I was dealing with on a personal level.

When I race, I have been able to leave everything out on the course.  I continue to train and have been lucky to be surrounded by friends who would let me vent and don’t judge me for my thoughts and feelings – or who would just let me be at peace with our run.

While I haven’t hit those PR numbers the last five years running is still there.  Tedy is still my “why” – autism life is HARD!  Back to that broken trophy…I was happy with my performance at that race but the trophy didn’t last long.  That’s this life. Happiness is brief the victories over the struggles in autism are brief and then it all comes crashing down and breaks and you keep trying to put the shittiest puzzle back together again.  Some days I go run as that emotional/physical outlet and some days I go sprint quickly after Tedy; because he escaped from wherever we were at and I need to keep him safe.  Autism is not only mentally and emotionally taxing but there’s a physical part with it as well.  Again, go back to my disclaimer post about the Autism Adventure series but this is my story and my experience.  As a caregiver to a son with autism I keep active because I fear the day when he will totally be able to overpower me.  I fear that one day he will be able to run faster than me and that he will get harmed because of it.  Yet I also pray that he will be able to reign in his speed and be able to complete his own 5K race.

We’ve come a long way since that broken trophy but we still have a long way to go and I know running will continue to be a part of my life and help me navigate this puzzle brick road of being as an Autism Mom.

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