the last hoorah

Well, geez…it is the last day of Fragile X Awareness month and the last day for this blog. I recognize that I did not super focus on Fragile X and that it was actually normal. I do not focus on Fragile X. As I have said before, it is only a small part of what makes my guys tick. I talked a lot about what they like and the things that they enjoy doing. Like you and I, there are many things that they do not like and do not enjoy doing.

Mathew, for example, does not like spicy food. Luke, on the other hand, will put an entire thing of wasabi in his mouth (he spits it out, but he has no fear of food, he also loves spicy food). Luke HATES fire alarms, smoke detectors, loud car alarms, HATES them all. Mathew, totally unfazed and usually gets a book to try to stop the smoke alarm when I burn something(thank goodness for him). Luke is the most empathetic human I have ever met. If someone is crying or upset, Luke completely takes that on. Mathew will try to comfort you, but will not cry with you. Luke does not like to draw or write in any fashion, Mathew is a budding artist with any medium. Neither of them drink soda and they really don’t care for sweets(cake, cookies, ice cream), this is a blessing and a curse, because I usually get stuck with them and I have no shame on certain days.

They love when we read together. I have been buying them book sets for Christmas and then we take the book out on CD and listen to it in the car. Mathew ‘follows’ along and it is just awesome. We have already completed the Harry Potter series, Percy Jackson series, and we are on book 3 of the Lord of the Rings series. We listen to the books and then rent the dvds from the library. I buy the series because I want them to keep these books as memories and hopefully when I am gone, someone else will read with them. If you have any recommendations, I am always looking for new ones! Up next is the Chronicles of Narnia and Diary of a Wimpy Kid and another Percy Jackson series 🙂

We definitely do not have it all together on all days. There are some days I feel like SUPERMOM and other days I am lucky that I drag myself out of bed. I don’t know how single parents do it… My house is never as clean as I wish it was and my garden is never as tidy as I wish it was and sometimes I forget things that I actually really need to remember. This month though, this month was a really amazing month. As more time passes and I continue to do this on my own I feel like I get stronger and happier. I have more of an ability to open myself up to other people and accept help when I need it(even admitting when I need it). I sit on my porch and look around me and I am amazed. This is the tiniest sliver of the world, but it is ours and it is gorgeous.

Who knows what the next year will bring? I keep seeing there are new medications for individuals with Fragile X, no gluten, yes gluten, no cheese, yes cheese…I do know that I will keep doing my best. We have recently started taking CBD oil and I have seen significant improvements in both of the guys. Luke is eating more and just generally more mellow and same with Mathew(although he always ate more than a normal person). I have no assumption that it will cure their Autism/Fragile X, but if it can take the edge off and make the anxiety a little less and the world a little more bearable without insane side effects, then I will try it. I am so happy medical marijuana is where it is today. It is going to save lives, I have no doubt. We are not there yet…we will stick to the CBD oil for a bit and see how that goes(it has only been since June).

There are 3 weeks left of summer camp and then another week and a half before school starts. I cannot wait to get back to the grind. The treadmill at work is calling me…the weight machines miss me, I just know it 😉 Plus, I have to get super ready because come January, I am going to be taking the 200-hr Yoga Teacher Training! I am beyond excited for this opportunity and amazingly blessed to be able to do it. I have to call and order wood, so we have heat this winter. I cannot wait for the time when we get to sit in the living room, with the wood burning stove crackling…literally dreamy to me. Things can only get more amazing.

This last blog is bittersweet. I will miss posting about our lives and the stories and memories it has stirred up in me. I will miss your feedback and constructive criticism…oh, by the way, my Mom wanted me to mention that when Mathew almost drowned at my sisters wedding, we were not all shit faced! I guess it was like 10:30 in the morning, but I love me some mimosas, so I am guessing I had a few and after, I probably had some more. My memory is not as solid as I wish it was, so there is a good chance I did not get all of these details 100%. Please know, I did not speak out of turn on purpose and as I told my Mom, I was recounting my drinking, not everyone else (even though I did say everyone was drinking) I am sorry.

Also, I guess I should address the drinking since I did mention it a bit. It is funny(not funny) to grow up with parents who are alcoholics, as many of us did and do. I am beyond lucky that my parents have been sober for many years and I am THE MOST PROUD OF THEM. I struggled with the IDEA of addiction for many years. By all accounts, I should be an alcoholic…but I am not. Have I had one too many drinks, one too many times, hands down, yes. I used drinking as a coping mechanism and sadly, 9/10 if someone else was drinking, I had the ‘if you can’t beat them, join them’ mentality. I vividly remember drinking with my ex and I would pour drinks and I would always give myself more, so he would be having less, because for him it was an addiction. I knew this, and I was doing what I thought was the lesser of the evils. I have watched so many people I love struggle with addiction, and I never understood why they couldn’t just stop. I could. I still can. I also keenly remember growing up and being straight edge and promising myself that I would never allow myself to be ‘out of control’. I wanted to be in complete control of my body…

Mental health is the issue here, for me. Whenever I was super anxious or depressed, I would drink more. I would work through it and then stop drinking. I have never experienced withdrawals or anything like that. I would just wake up and not drink for however long. The funny(not funny) things is now, I drink and I just feel like crap. I don’t get that happy buzz any longer, I just feel full and then I usually wake up with a silly headache and this is only after 1 glass of wine!! Listen to your body, it knows.

Anyhow, thanks for sticking with me for this month. I have to give a huge shout out to this amazing woman in my life, because without her, I probably wouldn’t have done this blog. It was her tech savvy ways that taught me a little bit more about this blog world and encouraged me to do it. I am so glad that I did. Thank you xoxo ❤

Thank you to YOU. To every single one of you who have been a part of my life, Lukes life, Mathews life. On this adventure you have shaped our path. You have taught us something that is invaluable for our growth as individuals and as a family. We laughed with you, we cried with you and every where in between. I hope you have a beautiful remainder of your summer! Please, do not be strangers. We love company and we are getting out there more for visits, be persistent and patient 🙂

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Thank you. Thank you. Thank you. Seriously, thank you.

 

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Red Sox game!

IMG_9721Pictures are worth so many more words than I am able to produce at this juncture. It was HOT today and me and heat, we don’t get along too well. I am fighting a pretty snazzy migraine, so I will do my best. We had a really great day! The sun was shining, the guys had a nice time, and it was so great to do something with my Dad!

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We arrived and everyone was starving, so foot-long hot dogs it was!

Mathew started off the day in a bit of a funk. This was a totally new experience for them. We are used to our local ball field, where Mat can bring his glove and he usually gets a ball. We were high up, surrounded by many, many people. It was pretty overwhelming.

Mat and my Dad were into it! My Dad was telling Mat the score and keeping him updated on all of the things that were happening ❤ I told you it was HOT. These were our second bottles of water, Luke couldn’t get enough.

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I have so few pictures of my Dad and I. I love this one 🙂

Just some Red Sox fans walking back to the car. The Red Sox may have lost today, but all in all, today was a win for these guys ❤

Thank you, Dad for driving and parking and EVERYTHING. We love you so much and I am so happy we could share this day with you!

I leave you with this photo: today was a good day.

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g & g II

I have to admit this has been the most peaceful, least anxiety producing visit I have ever had in my adult life. I am not kidding. I hated coming to Worcester, everyone knew it. At one point in my life when I was in a foul mood it was referred to as my ‘Worcester face’. Worcester does not typically bring out the best in me. This has zero to do with my parents and more about me and my own personal experiences here. But, this visit is different…Ego says, “Once everything falls into place, I’ll feel peace.” Spirit says, “Find your peace, and then everything will fall into place.”

I have never felt more peaceful than I do at this time in my life. Everything is great. I look forward to each and every day, I have a constant smile on my face and there is no doubt in my mind that tomorrow will be even better than today ❤ I feel like I am seeing the world through fresh eyes. The guys woke up early this morning and hung out in the living room. I got up with them and fed the dogs and let them out. My Mom got up and helped with the dogs and then allowed me to go back to bed. This was amazing! I snoozed off and on and she made the guys a beautiful breakfast and they were watching a movie when I did finally emerge around 9am. She even made me these amazing pancakes with blackberries from the Cape! So blessed.

I ran to the local Starbucks for coffee with Escobar, because that silly guy loves to go for car rides. It was a really peaceful morning. I left my phone at home, listened to the radio and pet my buddy. I snagged a green juice because I was feeling low on greens and my venti soy mocha. We headed back to my parents and when I was pulling in, both of my guys were out doing yard work with my Dad 🙂 I didn’t have my phone to take a picture, but believe me, it was adorable. My Mom and I were going to go back to school shopping for the guys because savers was having a 50% kids clothes! Win! I was able to pick up a bunch of clothes, a Christmas present for Mathew and some neat art in really expensive frames 🙂 I love shopping with my Mom, we look around for things and then when I lose her, I walk around the store yelling, “Moooom” in the most annoying, lost child kind of way. We also just have a really nice time, we get to catch up and we actually enjoy the others company.

We called my Dad on the way home and he was just headed back to the house from the dump and we would cook up a smallish lunch. We did that and I took the opportunity to see how Escobar would do outside with the other two dogs and he did pretty well…there may be hope for him after all. (when we met him originally, he was completely fine with Butch, but since coming home, he has been a bully) My parents got ready for church with the guys and they headed out. We rarely went to church when I was growing up, except with my Grandma and Papa, and even then, I went because I got a killer breakfast afterwards lol But, whenever the guys are with my parents they go to church and like being spoiled by them, I’d like to think my guys have a nice time at church. My Mom always reports that they are on their best behavior and that many times people compliment them for such well behaved guys ❤

While they were gone I cleaned up the front of my car, in case another human ever sits there. I did a little laundry and I got dinner ready. My Mom got everything together for shepards pie, I did a little of it, and threw it in the oven. It was ready when they returned from church and we all sat to eat. Something you might not know about us; we say grace at every meal we have together. We said grace growing up and when the guys and I sit down to dinner we also say grace together. We hold hands and repeat; ‘God is good, God is great, we thank him for our food, Amen. Bless us, oh Lord for these thy gifts that we are about to receive. From thy bounty through Christ our Lord. Amen.’ Which is immediately followed with, ‘Does anyone have any special prayers?’. This is the time where we give extra thanks for anything amazing in our lives. Most of the time, it is that we are all together having this beautiful meal. When I was growing up, it could have been, ‘Ruth did really great at her swim meet’, ‘Sara made honor roll’. If there are new people at the table, we give thanks for their presence with us. It is a really beautiful thing. I may not be super religious, but this is one of those things I want to do. We should always give thanks for the food we have and the people we get to share it with. When I am on my own or in a crowd I always do it silently ❤

After dinner we all just relaxed. Mathew wanted to watch space(Star Trek TNG), so we watched a few episodes. Luke and my Dad watched the world go by: IMG_9703

Mat played a new card game he got for his birthday, my Mom and I cleaned up a little and now Luke and I are watching Coraline. I cannot believe he is still awake. I just want to watch V for Vendetta and chill. Mathew is beyond excited for the Red Sox game tomorrow and I have to admit, I am really looking forward to it. We are going to drive in, as opposed to the train(thank you, Dad for understanding my anxiety 🙂 ) It is a 1:30pm game and we have the potential to get home at a decent hour. I am going to do my very best to take so many pictures! The guys have their Red Sox gear ready to go and I have some CBD oil 😉 I will leave you with a photo of this little bully. When he rides in the car with me, I refer to him as Bird. He perches himself on the center console to await my arrival if I run in to a store really quickly. He has been living it up at my parents and it is really cute. IMG_9700

 

 

grams & gramps

Happy Friday 🙂

We are visiting my parents this weekend so we can go to the Red Sox game on Sunday, for Mathews birthday! These guys LOVE my parents, Grams & Gramps to them. My parents of course love them too. Every time my Dad sees Luke he says, ‘Hi Luke. Love you Luke. Hi Gramps.’ lol Mathew gives big hugs and kisses and then 4 or 5 more. Mathew is such a love bug. He helps Grams in the kitchen, he plays cards with Gramps and of course does the lottery with him. Luke gets waited on hand and foot 😉 They get to watch ‘real tv’ and my Mom fills their bellies with so much food.

It is actually pretty neat to see them completely function in a totally different environment. They each have their own rooms and their own toys here. They have their own routines too. It is a really beautiful thing. These guys feel completely safe and happy and loved here, because they are. I feel like the outsider 😉

It has actually been fun for my parents and I to figure out new roles with new humans to share. When I adopted Luke I was a very strict vegan and I tried to get my parents to follow our diet. To their credit, they did a little. But, then my Dad would take Luke to Coney Island for hot dogs and my Mom would just run through the drive through at mcdonalds…egh. It was a losing battle and one that I used to think I had to have and now, it isn’t the end of the world. These fun meals are special treats for my guys and that is alright with me.

I remember spending the weekends with my Grandma or I would go to her house when I was sick and couldn’t go to school and she would spoil me like no other. I loved it! I want my guys to experience the same thing with their grandparents and my parents do not disappoint. It is a mutual experience for all. My Mom didn’t get to experience babies from either my sister or I…I just showed up with a couple of 10 year olds. Luke might be almost 19 and Mathew 15, but they still love to snuggle. They smile and genuinely want to be close and connected to the people they love in their lives. How many 15 or 19 year old guys do you know that want to spend time with their family?? I know my Mom will hang onto this for as long as she can…and life is too short. These guys will eventually get older and probably more ornery. We won’t ever have this time again, keep spoiling them Mom & Dad ❤

My parents have been the most supportive parents I could have ever asked for. From day one, they embraced both of these guys as a Mikulski. They are such an important part of our lives, the most visible family we have. They have both supported my personal choices with my own life and the choices I make for the guys. I throw ideas by my Mom day in and day out. She is a trooper. My Dad asks about everything that is going on and always makes sure that we are doing well. I didn’t get to choose these parents and they didn’t choose me, but I am glad we got each other. I am so thankful that my guys got to have grandparents for as long as they have and will continue to have. It is a special bond that cannot be replicated.

Feeling so much love in Worcester(I am just as shocked as you are).

who is your superhero?

Obviously, I love my guys for so many of the same reasons and so many different reasons. I love that Luke is almost always happy, he has greeted the day with joyous song ever since day one. Luke is like Buddha, if you Google, ‘Can a person become a Buddha?’ here is the response:

This person can help others become enlightened too in a proper way. There are ideas which are said to lead someone to enlightenment. They are called the Dharma, meaning the way or the truth. Anyone can become a Buddha, it is said, but it is very hard.

I don’t want to get all woo-woo on you, but I believe that Luke is enlightened. His patience and compassion and wise eyes tell you something more is going on there.

I love that Mathew is always yearning for more! More knowledge, more independence, more playing ball! He is tenacious. It is like he knows how awesome it is to be alive and he does not want to squander it, ever. Mathew is a text book superhero. Quick like lighting, ready to go at a moments notice and so, so kind. Saving the world one scraped knee at a time 😉

Yesterdays blog left me in a funk. I wanted today’s to leave me in awe of these guys and what they are bringing to this world. I am in awe of them every single day and I hope you have been able to feel that.

Here is Mathew at work:

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2009: here is Luke, much younger, taking some space at our very first Special Olympics event(I was still fostering him…or maybe not even yet, this could have been a weekend visit) I call this The Meditation Walk:

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I had many more photos to share, but I cannot find where I saved them…bleh. I will leave you with this last one. This week was superhero week at Mat’s camp and I took this picture to share that he got an award and medal for something. When I looked more closely I realized it was for me. All good parents deserve an award like this, so I share it with you amazing parents out there, killing it day in and day out. You know who you are! Mom & Dad! You are definitely in the running for best 😉

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this blog is called what happens in july for a reason :)

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If you know me, you know I am terrible with dates, times, years and anything having to do with the past. My Mom and I were chatting yesterday and she asked, ‘Do you know what tomorrow is?’…my response: Wednesday.  She told me I was the funniest person she has ever know(I am exaggerating) and reminded me today is the day I adopted Luke in 2010. This whole time I thought it was 2009, but I am guessing that is when he officially moved in with me(duh, I fostered him for a year).

Yesterday I told you all about the things the guys like to do, but I forgot about one thing Luke LOVES to do. See above picture. Luke loves lining cars up, in this picture it is trains, but really he loves lining up anything with wheels. He has his own rhyme/reason for why he chooses the ones he does and what order he decides they go in. He can do this for hours. He recently added a light up jack-o-lantern to the mix and that is kind of funny and terrifying(he lines them up in the spare bedroom, which I have to go through to get to bed, and sometimes it is startling when he leaves the light on).

I already told you everything I could remember about Lukes adoption day earlier in the month, but I wanted to share this photo of him. I had to acknowledge that today was the day so many years ago 🙂 Today, I also ponder life and wonder why things happen the way that they do and for what reason. I hope this blog will remind me to ask my friends who adopted their boys this question: What did your family think? This has come up in a large percentile of my dating life with kids. Everyone thinks I am a saint for adopting these guys, but when it starts getting too close to home, they get pretty nervous. I have spent countless hours talking to a therapist, my Mom and friends about this: no one would actually choose this life for their adult child, and that is ok.

People used to get married, have children, raise them and hope for beautiful grandchildren. Two point five, white picket fence, dog, jobs, etc. No one actually throws children with disabilities into that dream. Who would choose such a life?? I used to think it was a big deal to get married and have a partner who actually wanted to be a parent to these guys just as much as I did, even go so far as to adopt them with me. That is a reality that will actually never come. I am not nay saying it, and I would not turn it down if it magically appeared…but I can say with 100% confidence that there has been the conversation with parents of partners choosing to date me to proceed with caution in regards to my kids(and me…I was a crazy person lol). I even had a candid conversation with my Mom about this and if we are being honest, she would have not chosen this life for me. These guys are a lifetime commitment like no other. My guys will not go off to college, potentially they will not get married, leave home, and if I am being very honest, I hope to all the gods that I am never a grandparent. And to raise them as a single person in the middle of nowhere…completely insane. Now, my Mom would kill me if I did not follow that up with: She loves these boys more than life itself and has and will do absolutely any and everything for them. She cannot imagine life without them and let’s be real, neither can I. Would she have preferred an ‘easier’ life for me, sure! Who wouldn’t!? But one of the best things about my family; I chose it.

Sometimes reality hits me, hard. What will happen to these guys when I die? I don’t have enough money saved if anything ever happened. I live paycheck to paycheck with the hopes that I will pay this house off sooner than later and then be able to save some money. What would happen to them if something happened to me this year? That one makes me cry. Would they think I just abandoned them?? No one would love them like I do. No one would know their quirks or the things they like or don’t like. No one would know how far to push and when to give space. I’d like to think my sister might step up, but she hasn’t really been a part of our lives since I adopted Mathew… Sure, I have friends, but they have lives. More terrifying, what will happen to them when I can no longer take care of myself, never mind them. This is just a constant reminder to live in the moment and love all the special people in your lives.

I can’t control
My destiny
I trust my soul
My only hope
is just to be

There’s only now
There’s only here
Give in to love
Or live in fear
No other path
No other way
No day but today ~ RENT

Whoa, this got deep, quick.

I have been on edge ever since we elected a president. Today, with the banning of transgender people from the military?? He is such a piece of shit(he hasn’t changed since day one…continual piece of shit). I have been terrified for my guys, for everyone in the LGBTQIA community, and really anyone who isn’t white and privileged. I have also really tried to stay out of politics and areas where I don’t want to fight with anyone…but I will absolutely not be quiet any longer.

I don’t actually ‘identify’, which is hard for some people when we live in a world where we need labels to identify who we are, where we are going, what we are doing. I mean, I am Ruth(fact) and I am a lady(opinion statement). I respect and love everyone who does identify, however they identify. I have crossed paths with all letters on the LGBTQIA letter board and they are all amazing. I don’t care who you are, if you are a good person, who believes all humans deserve human rights, then you are alright in my book, oh…and animals and their rights… 🙂

I think what is really not sitting well with me is this question: what are we missing? Is this really a distraction for some even worse stuff that is happening in our country? And how do we know?

If you haven’t seen the movie, V for Vendetta, I strongly recommend it.

V: People should not be afraid of their governments. Governments should be afraid of their people.

the best of both worlds

Every day I find new things to be grateful for and I hope this never stops. I am blessed beyond belief. BBB ha! When people have kids I am sure they wonder what they are going to be when they grow up, what kinds of things they will like, will they be sporty spice or posh spice…I mean, these are the questions I ask myself. 😉 The answer to these questions is that Mat is sporty spice and Luke is posh spice and I freaking love it!

Luke reminds me of Kurt from Glee. He is a diva in his own right. He randomly puts my dresses on and heels, often times grabbing a purse. Luke rocks this look, he owns it. He LOVES singing, theater and anything artistic. He will ask you to stop singing if you are off-key, but if you can really sing, he is your best audience.  He wants to be the center of attention whenever he can. If we are at a wedding or any party where there is dancing, Luke is literally in the middle of the dance floor and people are all around him. His smile takes up his entire face and he is in his glory.

We try to go to at least 3 theater productions a year. It doesn’t matter what it is, Luke is enthralled. Last Christmas, we went to see A Christmas Carol done by a local group and it was just ok, but for Luke it was so much more! At the end, he stood up and was laughing and clapping and screaming(joyfully) so loud that the guy called him out. I let him express how happy he is, never try to dull someones light. We got tickets to see Little Shop of Horrors, which is one of Lukes favorite performances. I bought tickets as far away from people as possible, because I knew he was going to be super excited. We got there and the people were so happy to tell us we got bumped to better seats…I was probably the only one is history to dread that. We tried it…lasted 6 minutes before people were shushing us and telling us to be quiet and giving us the dirtiest looks ever. I didn’t want to ruin other peoples experience, but give me a break! Luke was happy and excited and I don’t know how you can try to shut that up…it wasn’t a Broadway show people! We eventually moved to the seats I originally purchased and all was well with the world.

Luke also loves all things spooky. Halloween and Christmas are his favorite holidays and ANYTHING by Tim Burton is for Luke. He is in love with Coraline, wants to watch Corpse Bride and Nightmare Before Christmas all the time. I really hope that Luke will stay awake late enough one year so I can take him to see Rocky Horror Picture Show…I think he would die from excitement! Luke (and Mathew) love most Disney/Pixar movies and can talk about them all day. Luke loves to read and be read to. He can also sing a mean country song called ‘Lover, Lover’. I recently started listening to country music in the car with the guys and it was impressive how they started singing along. Country music is slower and you can understand the words, so both of the guys can be heard singing along in the car and I love that. I don’t super care for country music, but if it means I get to hear my guys sing, I love it.

Mathew is pretty much the opposite of Luke. Mat loves all things sports. If it is a sport, he wants to play it or watch it. Mat is the reason I got the season tickets to the baseball games last year and it was worth it. LCC has been an amazing place for Mat because he can play all sorts of sports there. They even had a hockey club and Mat was really good. I got him his own hockey stick for Christmas and he loved every second of it. I want to bring him to some local games this year! Mat will play ball all day and never get tired of it. He has the energy and the skill for it. People constantly comment on how good he is, and he really is. His hand/eye coordination is incredible. Mat is a ‘mans man’. He loves my Dad, Gramps. My Dad does his lottery and Mat goes with him. He helps him with the yard work and working on stuff around the house. It is a beautiful thing. Mathew is also a complete card shark. He can play cards all day if he had the choice. I wonder what he would do if he had to choose between cards and baseball?? Mat loves board games, with Sequence being an all time favorite. He cheats like no ones business, but I call him out on it all the time haha. He also really loves to draw. He loves water colors and oil based crayons. Mathew is really creative when it comes to art projects and I hang them all over the house.

I feel like this is kind of odd to be good at, but Mat is really great at being a foster brother. He asked that we foster babies this time around and we have fostered a few. Mathew is very helpful and I think it is super important for him to be able to show and teach a smaller human how to navigate this house and this world. I think every time we foster, Mathew grows an inch and learns so much. It always comes with ups and downs, but for the most part, Mathew does wonderfully. I have already told you that he is a caregiver at heart and he is with animals and humans alike. He is nurturing, kind, patient and has a wicked sense of humor. This kid.

They both love riding their bikes, and honestly, spending time as a family. We stack wood together and we all have our own gloves. We go to the CSA and pick up our share every week. We go grocery shopping together and meal plan, laundromat, taking care of the animals… You know, I never dread doing anything with these guys. I know we will have a blast no matter what it is and they are willing to try new things! We went zip lining just the other month and I definitely didn’t think Mat would do it, but he did and he was so amazing! I want them to experience everything that life has to offer and most likely I will not say no to trying something out. I want them to be happy, feel comfortable with who they are and know that they are safe with me to try it all!

could this be more interactive?

It is the 24th day of writing in this blog, I guess 23 since I missed a day. I have all these ideas for how I will finish out the month, but just in the last five minutes I thought to myself…I wonder if people have questions? Wondering about adopting? About Fragile X specifically? About anything that I have written about that sparked a ‘tell me more about that’ feeling? I looked at this blog through the eyes of a reader and thought about how many adventures I have had with these guys.

From moving to MA with Luke, traveling to the Fragile X conference in Detroit with my Mom and Luke, going to FL for Christmas to be with my sister, going to FL again for my sisters wedding and Mathew almost drowned. Let’s talk about that for a moment. So, I was still fostering Mathew and they allowed me to bring him to FL for my sisters wedding. Great! She rented this big fancy house on the water with a pool. So, all the adults are hanging out drinking more than we should have been and having a grand old time. I forget if they told me Mathew could swim or not, but he wasn’t really interested in going in and I didn’t want to push it, so I let him be. Luke is a happy swimmer, so he does his own thing. I will set the scene:

Beautiful day in gross FL and there are 30+ adults hanging poolside. Everyone is drinking and having a gay old time. Kids are running around, there is music in the background and myself and others are in the hot tub(in FL…that is stupid). I do know that my Mom and Dad were sitting close by and we were laughing and such. All of a sudden my Dad takes off like a rocket and is swimming like an olympian towards the other end of the pool. It is not a really large pool, but it felt like it in that moment. He gets to the end and pulls Mathew out of the pool. His face was blue and he was coughing, thank goodness. He coughed a good amount and everything got quiet. Holy hell. Had my Dad not looked over in that moment, things might have turned out differently. I was in shock. There were SO MANY people around, yet no one heard or saw a thing, except my Dad. That is probably the most terrifying thing about kids who drown…it happens so quickly and it is completely silent. My Dad is my hero, for this and many, many other reasons. Needless to say, Mathew really did stay away from the water for a long time. He definitely loves the water now, but is much more cautious. Well, that was one adventure.

We have had many adventures camping, there isn’t one that sticks out as the most adventurous, but I do have my favorite park. Bash Bish Falls in Copake, NY is for me. It has this really great bike trail, a deep swimming hole for people who can swim that also feeds a smaller, more shallow area for kids. The little country store is adorable and sells all of the gross things you eat/drink while camping. The weekend we try to go is Copake Falls Day! It is just everything I love about this part of NY. There is a small parade, church tag sales, a BBQ and live music and even fireworks…I love it there.

I feel like we laid low after the FL vacations we had taken(3-4 years), until this past summer. My Mom, Dad, the guys and I went on a Disney cruise. Now, don’t even get me started on how we are ABSOLUTELY NOT a Disney family. But I will say, for the guys, this was a really neat vacation. It is a cruise, so you are almost totally safe and would have a really hard time getting lost. All you can eat food, because it is Disney, there are Disney movies playing 24/7. We happened upon ‘pirate week’, which was pretty cool for my guys. My parents got a cabin directly next to us and we had balconies. We had a lovely dinner every night with another family who tried to talk to Mathew all the time lol

There was a water slide on the boat, actually two. My Mom and I took the guys up the first time. Luke was with me and Mat was with my Mom. Mat was a little nervous, but he did it and when it was over, he was over it. Luke screamed and scratched me and tried to bite me, when it was over he jumped up and wanted to go again! So, we did. Mat decided that he was better off on the little kid water slide, it was a little safer and you could slide down on your body as opposed to a tube. The smile on his face was brighter than any sun. Luke could not get enough of the big water slide and wanted to be on it at all times. On our last night, the lady who was working there and saw Luke freak out and then want to go again, brought him an award for the most brave tuber…so stupid adorable.

We did get off the boat one day to go to the island that Disney made…I forget the name now, but that isn’t super important. That day, we floated around in the ocean, watched a wedding, ate some really good food and sadly, watched someone die…I mean, we didn’t actually see the person die, but there was an emergency and we saw the vehicles and people running around. From what I understand a person had a heart attack and didn’t make it. I cannot imagine.

I was so blessed to be able to bring my guys on a proper family vacation and even more blessed to have my parents with me. I forget if I was a basket-case on this vacation, so Mom & Dad, I am sorry if I was. Please know that I had such an amazing time with you guys and I know Luke & Mat did too. This was hands down, one of my most favorite vacations ever. I am so glad we all got to share this experience together. We love you so unbelievably much! One of my favorite parts of this vacation was that they take pictures at the dinners and all over. They cost a fortune, but since my family was never good and is still not good about capturing moments with pictures we bought them. My Mom even had one blown up of all of us, it is actually a good one, and she gave it to us for Christmas this year. It hangs in our living room and every day I look at it and smile.

We don’t have much planned until Christmas 2018, when we are going to Hawaii!!!! I am pretty thrilled about this.

This summer has been busier than expected. Between foster kids and foster dogs, our weekends have been go-go-go. Trying to plan things is a challenge. But there is time that I am taking off, when the guys don’t have camp and school hasn’t started yet. I am hopeful that our new foster pup will have found a permanent home by then, because juggling 3 dogs is a bit much, not to mention Escobar is kind of being a bully to Butch…we are working on it. This was my second summer alone out here and I am getting a better feel for it, to be more prepared for next summer. Also, come November 26th, I will have already booked the majority of our camping trips, NY look out!

I hope you had a great adventure today, because everyday is one! Thanks!

 

i forget how lucky i am some days…

One of my most favorite friends came to visit yesterday! We used to work at the the same place where I was the Director, she was also the summer Director. We both left there a little worse for wear, but our connection was instant. We both moved away from the Pioneer Valley around the same time. Sadly, she and her husband headed towards Boston and we headed less than a mile from the NY boarder, nothing like complete opposite directions. It was so great to see her. We are the same age, but she has some health stuff going on in her life and I know she struggles, yet her outlook on life is amazing. We got to catch up and she got to see the guys 🙂 it is so refreshing to have people in my life that look forward to seeing my kids. She told me about Hygge. (because I don’t call things by there real names, I call it huggie. That is not the pronunciation.) Do you  know what that is?

http://hyggehouse.com/hygge

I found this link and I just loved the description.

“Hygge (pronounced hue-guh not hoo-gah) is a Danish word used when acknowledging a feeling or moment, whether alone or with friends, at home or out, ordinary or extraordinary as cosy, charming or special.

Hygge (or to be “hyggeligt”) doesn’t require learning “how to hygge”, adopting it as a lifestyle or buying anything. It simply requires being present and recognising aa moment that feels so sweet, cosy, charming, special or nice that you just have to name the moment.

So whether it’s making coffee a verb by creating a ritual of making it every morning to a cosy evening in with friends where you’re just enjoying each others company to the simple act of lighting a candle with every meal. Hygge is being aware of a good moment whether it’s simple or special.”

We all could use a little more of this in our lives. I learned something new from my very wise friend. Thank you.

My friend and I talked about our new lives in our new places, friends, relationships, work(old & new), health and the guys. She couldn’t believe that Luke will be 19 soon and that Mat is 15! She has been in our lives for 5 years…time flies so quickly. Throughout our visit my guys entertained themselves; Mat went for a bike ride, Luke sat on the hammock flipping through the new Bob’s Burgers book, then Mat threw in a movie, Luke went upstairs to play with his cars…there was no structure. This is a parenting fail or win depending how you look at it. It is documented that kids with disabilities thrive on routine and structure and I agree that it is so important. But, in the same breath, that is not real life. Shit happens that we do not plan for all the time. The guys know that we just go with it. Sometimes we make plans and they happen and other times they don’t. I will say that Mat asks me every single day what we are having for dinner; sometimes I know, sometimes I make something up. Regardless, we have dinner and he is fine with it.

Even today, we got a call for an emergency foster pup placement yesterday. So, when the guys woke up, we jumped in the car to meet the woman and came home with an additional dog(obviously not the original plan today). She is beautiful, let me know if you are interested in adopting her! We then got home and I had to mow the lawn, so the guys did their own thing. Mat jumped in the shower and cleaned up a little, Luke is wiped so he is fighting sleep on the couch. It has just been a low key day and I kind of love it. No devices, music in the background, nice breeze coming through the windows, sleepy pups all over the floor, we have a really full life. I am so lucky.

 

today is officially Fragile X Awareness Day! i am also calling this ‘super blog’ to make up for the missed one yesterday.

I have already talked about how I do not share the same genetic code of my children or of women who carry the Fragile X mutation, but I still like to pretend that we are connected. I follow the The National Fragile X Foundation on fb for updates and maybe there are new studies about how to work with kids/adults with Fragile X. Luke and I even went to Bostons Childrens Fragile X Department once to see if he was a full mutation, he is not. (I feel like there needs to be a joke here…egh sense of humor) He is a full mutation…of AWESOME. So, I find that often times people focus on the negative of a disability, but NFXF has done a really nice job of highlighting the most amazing features of humans with Fragile X. Here are a few:

I really like all of these. It is funny, but I look at them and I think to myself, these actually apply to every single person alive. It isn’t unique to Fragile X, it is the way we should treat one another; with patience, kindness, understanding and a good sense of humor 🙂 and for the love of all that is good in this world, respect people when they need space!

I have never treated my guys like they have a disability. I have always treated them like normal guys and I have the same expectations of them that I would any other 18 & 15 year olds. I also have realistic expectations based on what I know they are able to do vs. where they struggle, as we all have strengths and areas of improvement.

I have been told that I am too hard on Mathew sometimes and I don’t disagree…completely. HE IS CAPABLE OF SO MUCH AND I SEE IT. I see him having his own place someday, I see him in a loving relationship with someone of his choice, I see him with his own dog and cat, I see him with a job…He is a natural caregiver. Example: he was at LCC and my friend who works there fell and busted her knee. He told her not to worry, he would clean it up for her and get a band-aide…and he would. I meet them where they are, and encourage them to be the best version of themselves that they can possibly be.

Luke, on the other hand, is different. I want all of the same things for him that I want for Mathew, but reality tells me that it will look quite different. Luke will probably need support throughout his life, and that is OK. With Luke, I pick my battles and I am always asking myself, is this something I should push or is this just where he is at? I do not always get it right. I will say that I have stepped back significantly when it comes to letting Luke do things on his own. The only areas I am more hands on with have to do with cleanliness(which is my OCD and my wanting him to be safe from ridicule). Luke still needs help when he has a bm, so I work with him to wipe properly. Luke still needs hands on assistance in the shower, he would just stand there if I let him…but every time we work on these skills he gets better. It will never be 100%, but as long as we keep plugging away. He is still capable of soooo much and when he does things independently or makes his own choice, my heart blows up!

July is that month that makes me remember how long we have been together. On my fb feed a memory popped up from 5 years ago. It was the day I adopted Mathew in PA. They are so tiny!

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Even in this moment I get choked up thinking that these beautiful boys were in the DCF system. I will never stop encouraging people to adopt rather than birth their own children. I don’t actually understand the desire to create new life when I look at the world we live in and know how many kids are actually in care…I digress. I don’t mean to offend anyone. I respect your choice.

This brings me back to when Mathew arrived, but then even earlier, when I got to take Luke out for the first time. Both of my guys have these toys that have been with them since day one. For Luke, it is Woody from Toy Story. I was visiting him at St. Charles Childrens Home in NH and we got to go out for the afternoon. There wasn’t very much to do in that area or many places to go, so we went to Kmart. He loves all toys of all kinds and anywhere we go, he wants me to buy them all. He is a driven young man 😉 So, on this day, I told him he could pick out one toy and I would buy it for him. You would have thought he won the lottery! He picked Woody. Woody has been a figure in his life since that day and Woody goes everywhere. Woody and Luke have adventures and I really think Woody is his confidant. Thank goodness Woody is so popular, because there have been several…Once, Woody went flying off the roof of my Moms car. Woody lost a foot that I could not repair. Woody has been through a lot. Here is Woody without his foot. I kept this one, I am not sure if it is the original, but sometimes I am a sentimental fool.

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I splurged one year and got Luke the collectors edition Woody…in hindsight, I should have just found one at goodwill or something, but here he is, in all his glory.

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This Woody has both of his boots, but a lot of his hair is missing. Luke and Woody go on rescue missions where Woody gets dropped from our 3rd floor to save someone. He also gets his head stuck between the stair railings and pulled back and forth until I cannot stand the noise it makes lol

Mathew…I had no idea Mathew would even connect with Zebra the way he has. His first night with us in Holyoke, I had this Zebra floating around because I was going to give it to one of the guys for Christmas and because Luke had plenty, I put it on Mathews bed when he arrived. Zebra has been there since day one.

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Zebra also goes everywhere with Mathew. He packs Zebra if we go camping or to Grams & Gramps house. This Zebra has been had his ears chewed, been throw in the washer several times and has this lovely pink hue to him because these flannel sheets leaked all over Zebra. Mathew does not play with Zebra the way that Luke plays with Woody, but he is Mathews constant sleep companion and when I look at Zebra I just see love. These guys love each of these toys as their own velveteen rabbit. The connection they have is truly beautiful.

I am going to leave you with a couple of pictures from this morning. I feel so much love in my heart that it hurts, but in a really amazing way. Bob’s Burgers has been off Netflix for some time now and I know the guys miss it. We received an incredible gift: The Bob’s Burgers Burger Book Real Recipes For Joke Burgers. It is a book with recipes for how to make all the burgers that they make on the show! Luke has been walking around all morning wanting me to read him a story from the book and Mat has been looking at all of the recipes, deciding which one he wants to make and telling me what we need to get at the store. Happy Fragile X Awareness Day!