Breaking up is hard to do…

March 16th 2019 Saturday.

I feel like I was broken up with today. You know how your heart aches. And you can’t quite see how you’re going to move on! There is no light at the end of the tunnel. That’s how I feel. Maybe I’m being a bit dramatic but not really! I even think James felt my heartache today.

Kyle had his quarterly appointment with Dr kundell this morning. He actually did the best, I think, he’s ever done! He walked in with lots of reminding that when he got into the office and sat down he’d get a sucker. Then we were able to go straight back and he let the dr weigh him(185 pounds 😳)-this is huge (not Kyle 😂 well i guess he is too, but the fact that he allowed for this to happen)because it’s always a struggle. Always. AND he let him get his height. What?! Who is this kid?! He did all this with no fight-he even smiled! He didn’t drop to the ground once!!! 😭Then he walked back to the room sat in the chair and ate his sucker! You guys! Seriously this never happens. Dr. Kundell was very impressed! And so was this girl!

We went over the usual questions and updates. He was able to get Kyle’s blood pressure and pulse (another miracle, Kyle didn’t even spit! I was in shock but waiting for something to go bad)! After about 10 minutes Kyle was done and walked out to help himself to another sucker. That’s when the ball dropped….

Dr. Kundell started to make jokes about him coming up on his 70th birthday in a couple of years. I could feel it coming….he said “and with age comes…” I finished his sentence, hoping he’d have to correct me, “retirement?” But he nodded. I tried to just make jokes so I wouldn’t cry right then and there.

James has been trying to prepare me for this day. Knowing it was eventually going to happen. But I refused to believe he’d ever retire! He couldn’t! But he is…and he just told me it’s happening in 2 years or less. And I need to start preparing…

We talked for a few minutes after James took Kyle down to the car. He told me how he has mixed feelings about retirement and that he loves all his patients, but he’s getting old and getting pressure from his wife. We laughed and he talked about how hes looking forward to enjoying his hobbies more. As we walked together out to the front, He ended with “what a journey we’ve been on together with Kyle!” He’s right. After all he started this journey WITH us.

He didn’t break up with us cold turkey but is definitely trying to prepare us. We used to see him every 3 months. We are going to every 6 months with my homework being to find a primary care that he can communicate with as the transition occurs.

But I’m still sad. Im still scared of not having him as Kyle’s dr. My heart still hurts.

He is the one who sat across from me and when I asked the question, “how do we fix this thing called fragile x?!” He’s the one who had to look into my tear filled, young 23 year old eyes and say, “we can’t fix it”.

Maybe it’s silly that I feel some sort of bond to this dr. But I do! He is the first piece to Kyles puzzle. He is part of my support. He has steered us through this journey. And I don’t want it to end.

I hate change. I hate it. I have no doubt-ok I’m lying I totally have a lot of doubt that we will be able to find a dr that will be as amazing as Dr. Kundell. Will we? Who sees patients on Saturday, because they know certain patients can’t deal with the chaos and the waiting that occurs in a doctors office? Who sits with a mom of a special needs child and tells her how awesome she is, because he sees she needs it? I’m not sure we find that again. I guess this is the part where I don’t see the light at the end of the tunnel. Sigh.

I have met some of the most kind, most genuine, most amazing, and by far most selfless people through mine and Kyle’s journey. It’s the best and worst part. Because that teacher doesn’t always stay Kyles teacher, they move on. Because that therapist doesn’t stay Kyles therapist forever, they move on. Because that respite worker doesn’t stay, they move on as well. So I guess the same goes for drs. Dr. Kundell has to move on. But the best because I will never forget those amazing souls. And the impact they had on my sons life. And in turn, my life.

I just need to focus on what great things those special people contributed to Kyles journey. To my journey. And Dr Kundell was definitely one of those special people, and one that made a huge impression on my heart. And THAT will last a lifetime. ❤️

Fear=reality

2/13/19

One of my fears with getting a dog for Kyle was that he would become so dependent on the dog that he wouldn’t be able to function without the dog. Well, my fear has slowly become reality.

Kyle has become so dependent on Gooding that fairly easy tasks or even preferred activities have become extremely difficult for Kyle to accomplish- unless the dog is visible. Kyle also struggles when Gooding goes outside or the kids take him for a walk. To say it’s frustrating is a complete understatement. I’m over it.

This was Kyle today toward the end of his meltdown because cody took Gooding for a walk around the black. He was gone 10-15 min and Kyle didn’t get up off the ground and calm completely until the dog was home.

Why can’t something just go super awesome for once? How come something I do to try and help Kyle just help him? Ugh. I am meeting with Erika tomorrow to come up with a plan to help overcome this bump in the road.

Always. Always something to work on.

Another day in the life

3.9.19. Have I said how much I despise weekends? Well I do. They are long days filled with meltdowns by Kyle. And eventually my patience dies and I have a screaming meltdown which leads to me yelling and more of Kyle crying and kids that think I’m mean. And a husband who probably thinks I’m crazy.

I have a sore throat and achey body but that means nothing. Except my patience dies quicker.

Kyle was up yesterday at 5:15-probably because he knew he wasn’t going to school. Because he NEVER gets up by himself on a school day before 6am. Then this morning again 5:15am he’s up. What did I do to deserve this? Seriously.

We decided to take a drive this afternoon. Like most saturdays. But he won’t get in the damn car without the damn dog. We are trying to make him less reliant on the dog. Because he has become so dependent that it is disrupting skills he has mastered without the dog but all of the sudden cannot do it unless he knows Gooding is right there. He doesn’t like when Gooding is outside or on a walk or not in the house in his view at all times. It’s super frustrating and a fear I had would happen when we were contemplating a dog. And of course here we are dealing with it.

Back to the drive…he had a major meltdown when we told him no dog for the car ride. He screamed and cried and sat down. Stripped. Hit himself. James can usually get him into the car but kyle got outside and threw up. All while a young mom and her kids were trying to take a walk. Super awesome.

I hate moments like these. It’s embarrassing. It’s awful. The woman turned around and walked the opposite direction. Away from us. I’m sure I would have done the same thing if I was her. But it still stung. It still sucked. I hate this.

At this point We got him back in the house and didn’t go on a drive with him. In order not to reinforce the behavior, he didn’t get the drive. He has to learn that the dog is there to help him when he needs him not something Kyle relies on for everything.

Moments like these make me hate the life we have to live. HATE. It’s not fair to any of us.

The day went on. A few more meltdowns when I said no to food or his iPad wasn’t doing what he wanted. Then….

Cody was getting ready to take Gooding on a walk and kyle lost it again. My patience was done. He got up stairs and refused to get undressed and into the bath. He was crying. I took his iPad away and turned the tv off. He still refused. The frustration level was at maximum. Finally after he knew my buttons are all the way pushed he finally got up and into the bath. Still crying of course.

I just want to give up. I’m so overwhelmed. Erika is only coming in once a week and it’s not enough. I’ve reached maximum capacity. I’m done.

The problem is. I can’t be done. I have to wake up tomorrow with a sore throat and endure another effing day. And if he still has a runny nose on Monday, guess what he stays home AGAIN. I keep praying for relief but a couple of hours or a day isn’t enough. I feel like there is no light at the end. And that is so depressing.

I finally text Erika tonight to tell her we need to get someone else in here more since she can’t be. I need more support. She is going to work on that. But in the meantime, I have to still show up and suck it up. Every single day. Cuz this is my life.

3 day weekend

March 7 ’19

Welp, Kyle woke up stuffy and is now full blown sick. Which doesn’t mean he lays around and relaxes. It just means he is cranky and has a yucky nose. AND has to stay home from school. So here we go…3 day weekend. Awesome.

Praying he is the only one who gets sick and praying it’s gone by Monday. 🙏🏻

THE missing piece

03/06/19

Today while the kids were at my moms for session with Erika, I mopped my floor. Yup, that’s what I did, for the hour and a half I was kid free. Then I sat in the quiet and admired my clean floors…that would only stay clean until the kids and dog came running through my doors. So for a grand total of 45 minutes, my floors would be clean.

While I sat in the quiet, my mind wandered. It started to think of all the things we have tried with Kyle. Stuff we have tried in hopes to make his and our life easier. Some causing a lot of sacrifices. Like getting a dog.

We got a dog for crying out loud. I am not a dog person. Like not even a little bit There I said it. My house has always been my safe place. I love my house. I keep a very tidy house. Having a dog has infringed on my safe place. There is hair everywhere. I hate it. Having a dog has caused me greater anxiety and even made me realize I have some minor ocd tendencies. We now have 4 vacuums. Yup, 4. The roomba that i run throughout the day, a shark for the carpet, a dyson upstairs and the dyson cordless downstairs for the hardwood. And I vacuum at least 3x a day and I have my kids vacuum in the evening. I have a candle burning all day. Plug ins in every outlet to make sure my house has ZERO scent of a dog. Even my car has dog hair in it. I can’t escape it. Sometimes I feel crazy. But I seriously can’t help it.

Kyle loves Gooding. And Gooding is a great dog. I would even go as far as to say I love the dog…now. All my kids love him. I am grateful for the joy he has brought to my kids, especially Kyle. BUT with that joy comes sacrifice and anxiety for me. A lot of sacrifice. I live for Wednesday when the dog goes with Kyle to my moms for session. Because I can vacuum and mop my floors, and for a short period of time, I can pretend like my house is dog free.

Did Gooding do all the things we hoped he’d do for Kyle? No. Does he bring happiness to Kyle? Absolutely. Is it worth the extra anxiety and stress I gained? Sometimes I’m not sure.

I found myself pondering why I continue to try, sometimes, crazy things (Like get a DOG) even with the uncertainty that they’ll even work? I guess the simple answer is, I’m a mom. Wouldn’t you do anything for your kid, even if it meant you may experience hardship? The more complex answer and maybe it’s a mixture of both…as much as I have accepted Fragile x and autism, there’s a small piece of me that hopes with every crazy new thing we try….maybe THAT will be the missing piece that will make our life easier…Maybe this is the answer! So until we find it I guess I won’t stop trying…even if it means 4 vacuums and anxiety meds for me. 🤷🏻‍♀️ Because I’m a mom…with hope.

Good night kyle

March 4th 2019

Twenty five minutes (at least) of this every night…but add in hair pulling and a lot of playing with my face. I try to think of how sweet it is and how it’s his version of snuggling. 🤨But most nights it’s hard to enjoy my hair being pulled out and my face being touched over and over.

This is my life

I feel like right when I think things are starting to get easier, I’m instantly reminded that this is my life forever and it will never be easy. And It sucks.

Kyle spent the weekend at his dads. Not long enough for me to catch my breath even. Not long enough for me to regain the strength to keep going. Ugh. I hate this. I hate feeling like this. HATE IT.

When things get this hard, my mind wanders to a year from now or two years then ten years, and I start to cry and can’t breathe. This. Is. My. Life. Forever. It’s not fair.

We celebrated Ethan’s birthday tonight. And I’m upstairs laying next to Kyle crying. Crying because I feel this weight on my shoulders that doesn’t seem to get lighter-in fact it is heavier. He got mad because his iPad won’t connect to the internet. I think his iPad is old and probably been thrown one too many times, so it’s calling it quits. But the problem is he refuses to use the brand new iPad downstairs. He knows the difference. So I fought with him to get his pajamas on and into bed. Now I’m exhausted. Mostly mentally exhausted. And guess what, I get to wake up tomorrow at 5 am and fight more.

This is my life.

He’s been at his dads for a couple of days. Why am I not rested? Why am I not refueled? Why do I feel defeated already and he’s been home all of 3 hours? He doesn’t go back to his dads for another month. I have to do this for another month with no break. Cue more tears. With spring break mixed in. Cue even more tears.

This is my life.

I can usually power through Kyle’s everyday struggles. But my mental strength these days is at empty. I feel like I never get past a quarter tank before Kyle drains me again. And then the cycle continues.

This is my life. And it sucks right now.