The tough gets tougher

Clearly I’m not a great blogger.
I apologize if you are someone who actually reads this!
My last post was April 2018–nearly one year ago. Crazy.
So much has happened since then. Curtis finished out third grade. He had a great year. He made new friends, loved his teacher—just had an all-around good year.

Summer was fun and went by much too fast, as always. Curtis spent about a week in Oregon with his brother and sister and dad. They all visited with his dad’s side of the family and had fun camping and exploring Oregon and the Oregon coastline. I have never been away from any of my kids for longer than a day or two so that was an adjustment for me!! After a week, I picked the kids up in Portland and we went on to explore Seattle then went off to Montana to visit with family.

It was a fun summer trip, but not without its challenges. Curtis’s behavior was all over the place. He was almost impossible to bring out to restaurants and was having more frequent bathroom accidents. I always made the excuses of “he’s out of his routine” or “he’s tired from walking around/staying up late”—but I knew this wasn’t “normal”. It was just hard to travel with him—and his siblings were becoming increasingly frustrated with being around him a lot of the time. Not an ideal family situation and not how anyone wants their vacation to go.

We finished up the summer and prepared for everyone to start their new school year!
Curtis is now in 4th grade. I had high hopes for this year—I knew it was going to be more challenging, but we had everything in place in his IEP. We had such great second and third grade teachers and are at such an amazing school.

It wasn’t long before the bubble was burst on that dream. Nothing was working out. His teacher didn’t seem to understand Curtis and his needs and we had a lot of drama very early on in the school year (think “emergency” IEP meetings and lots of discussions with my advocate). There were a lot of safety issues that weren’t being addressed at the school and it took months to get things back into place with that. I won’t go into specifics—but let me say that no parent should ever have to put up
the fight that Curtis’s father and I did for 2-3 months. Meetings, emails, phone calls, signatures—not to mention the anxiety, stress, and sleepless nights. Luckily, most of the school issues have resolved. Yes, it’s mid-February, but they’re resolved.

During this time, things at home with Curtis we’re getting increasingly worse. More bathroom accidents, memory problems, behavior issues. He was at a neurologist appointment when I brought this up. The neurologist was still concerned that he might be having seizures but she didn’t want to make him go through another video EEG. Instead, we increased his seizure meds—by half a pill then a full pill. The change was almost instaneous. He went from having bathroom accidents 4-5 times per week (maybe more) to none. He no longer asked me questions like, “did I go to school today?” after spending a full day at school (yes—those moments scared me—how could he forget a full day of school? But he was. And more than just a few times). We have kept his seizure meds dosage up. Since then he’s had one episode where he’s had an accident and seemed to have memory loss after. We are continuing to keep an eye on this, but assuming he’s having episodes of seizures. This, of course, terrifies me.


A few months ago he had neuropsych testing done again, too. The results came back mostly the same. She still gave him a diagnosis of ADHD (impulsive type), among other things. He has learning disabilities. He has a lot going on. We have seen a lot of outbursts with him recently, he’s always been impulsive, and most of the school-related stuff was spot-on. So, basically— a lot of what she said fit with what we’ve seen. And, honestly, the 30 page report was A LOT to digest. Still trying to process most of it.

We only have about 4 months left of school and Curtis still doesn’t entirely seem to have found his groove this year. Socially he’s struggling. He only has a few kids that will even give him the time of day and I think his outbursts sometimes make those relationships rocky. One of his best friends from last year was a little boy that had just moved here from another state. That kiddo moved away again. His longtime best friend is still around—but this year things are not the same somehow. As he is getting older, Curtis is more aware of his differences—and the other kids at school are less understanding and less interested in making sure that he is “part of the group”. I am concerned that Curtis will literally have no one to spend time with. The thought devastates me.

Curtis is a tough kid. I have done so many things to try to understand him and his complexities. It’s so, so hard. I can put him through a 72 hour EEG and a 6 hour neuropsych rest. I can get a 30 page report that tells me all I should want to know about how he thinks and learns and I still feel like I can’t figure him out a majority of the time. Maybe I never will. Like I said, he’s tough a one.
But not so tough that he doesn’t deserve love. And my fear is that, especially as he gets older and bigger, people around him will stop wanting to try to understand him. They will only judge him. They will see his shortcomings and failures and instead of giving him a chance, they won’t bother.

You can’t protect your kids forever—isn’t that something they say? But I’ll try. I really will. Even if I seem overbearing and whatever else. I’ll try to protect him forever. And I’ll also hope that even though he’s having tough times now, and will surely have tough times in the future, that people can see him and show him love. Because it’s the only way to make it through the toughest of times! ❤️

The trouble with travel

This is a post I could have and should have written after our trip to Maui last spring—when Curtis was fresh out of foot surgery and barely able to walk. How we managed to even get to the island is still a blur—me, 3 kids, luggage, a wheelchair, one kid in a brand new leg brace, airport security completely clueless about what to do with said brace (“can he take it off?” “We need to call someone to see what to do about it...”). Somehow we all got on that very early morning flight in one piece AND survived (and enjoyed) our vacation. Miracle of miracles. Actually, that and lots of help from family!!
We took another trip a few months later to visit family in another state. It’s a shorter flight than Hawaii, we stay in a rented house vs a hotel room, and we only have an hour time change. All in all, that trip (which we take every summer) seemed to go ok.
I will say this—
No matter what, traveling with kids is a challenge. Whether you have kids with disabilities or not (I have both), traveling with kids is just plain not easy. They get off routine, they are sleeping in a new place, everyone is often staying up later than usual—it’s a perfect recipe for a meltdown. The good news is that as they get older, it gets easier.
Or does it?
For Curtis, this has not been the case.
My “little guy” is only about two months shy of 10 years old and things seems to be just as difficult as ever, if not more so. He has a really hard time with changes in his routine. He struggles with sleep the first few nights and then everyone suffers the consequences in the days that follow. He loves the extra play time, but can’t handle it when we tell him it’s time to come in from the pool or the beach. Add to that the fact that he’s big and he’s loud, and I think you can probably imagine what an epic Curtis meltdown might look like. Stares from strangers don’t help.
What is the end result of all of this? Well, we still travel. I try to plan ahead as much as possible. Curtis loves video games and movies, so we prepare for any travel with plenty of both. He gets “hangry” justs like the rest of us so having snacks on-hand is also a must. Even though he’s almost 10 yrs old, I can tell when my boy needs a good nap and I honest to God force one on him if I have to—for the good of everyone on the trip. Meltdowns? I’m still trying to find the best solution for those, as I am not used to dealing with them much past the toddler stage. It’s hard to know exactly when or why they will come. That’s the most frustrating part about them. It can be really difficult—for me and his siblings (and everyone, to be honest).
I feel like there is still so much I have to learn  about my boy. What sets him off? What can I do to prevent certain episodes of anger or frustration in him?
I don’t travel very often without extended family there to help. It definitely takes a village!

**Curtis is being admitted to Rady Children’s on Monday, 4/16 for a 72-hour EEG after some suspicious episodes a few months ago. Hoping to get a few answers/more insight...

Battle of the Brace

“I hate this brace.” 

“What do you mean you hate it?”

“I just hate it. I hate wearing it. I just want to be normal—Like the other kids.” 
And my heart breaks. 

“Wait, buddy, did someone say something? To you? About the brace?”

“No. I just hate it. I hate that I walk different.”

I have him come over to me and I pull him into my arms. I rest my chin on top of his head...

“OK. I know. But you know we are all made different, right? So you are made different than me. I’m different than JoJo. She is different from her friends. So, really, it’s normal to be different. And having a brace is just your normal.” 
I pull him in closer. “You’ll be OK, lover.”

“OK. But I still hate it.”

He walks away. 

And I get it. I hate it, too. But it’s not the brace I hate. I hate that he feels like his “different” isn’t “normal”. We all feel that way about something about ourselves at some point, don’t we? (Or maybe at many points). But for him, I know it will be an uphill battle. 

I hate it. 

I hate that because he can’t run as fast as the other kids or because he doesn’t walk the same way, he feels like he belongs in a separate category. Normal vs not normal. I hate that people will judge him and make assumptions about him. 

I hate it because I look at him and I just see my little boy. Different, yes. But he’s mine. 

And, besides...we don’t really mind different over here. 

Actually, we love it. 

**It’s been almost a year since Curtis’s cast came off after surgery and he is still in his AFO almost 100% of the time. He is soon to be 10 years old (yikes) and we anticipate that after this brace, which provides a lot of stabilization for his ankle, he will transition into a carbon fiber AFO for his drop foot. So...we will need to "embrace the brace" for a while longer.

"Lover"

Is it possible to love someone too much? If so, then I love him too much. I think we all do. We love him and love ON him too much. We always have. He is the baby, after all. 

And once we learned of his diagnosis (diagnosES, I should say), we loved him all the more. I know it's probably not something you should do--or should you?--love a child a little more once you hear that they will likely have medical issues and struggles throughout their life. But I do. It's not to say I love him more than my other children, but I do feel like I take more moments to pause and look at him and take him in. I baby him a lot more (is that not a given? Would I not have done this even so?) 

My nickname for Curtis is "lover". "Good morning, lover!" "Come here, lover." "What do you want for dinner, lover?" I don't know how it came to be, but that is him...he is my lover. He went through a phase at one point where he would just look at me and gaze into my eyes and tell me he loved me. And with everything in me I knew that this child was something so special. And I hoped that he felt even half of the love from me that I felt from him. 

On Thursday, Curtis goes in for orthopedic surgery on his left foot. It's called a "Triple C Osteotomy". In the last year or so, his left ankle has started to collapse and he has developed more of a flat foot on his left side. And it's starting to become painful. And it's starting to affect his leg, hips, and back. His AFO (ankle-foot orthotic) isn't helping this at all, and surgery is the best option. And this is the age to do it, even though I absolutely hate the thought of it. 

He will be admitted at Rady Children's in the morning and, barring any complications during surgery, will be there for at least 24 hours. He will be in a cast and wheelchair for 8 weeks and he will be strictly non-weight bearing on that left side for the full 8 weeks. He will then be in intense physical therapy and will get a new, custom brace once the cast comes off. (And we are going to Hawaii for some swimming therapy and R&R when that cast comes off! Hallelujah!!) 

So, in short--Lots and lots of adjustments coming our way in just a few days. Curtis still relies on others for a lot of things during his daily life. But, especially as he gets older, he likes to try to be independent. That is out the window these next 8 weeks, when he is going to need assistance with everything from getting dressed to being carried upstairs to going to the bathroom. It is going to be tough. Not just for him, but for all of us. Big bro and big sis are going to need to be helpers and I wonder how they will fare seeing him this way. They know what is coming, and I see the concern in their eyes when we discuss it--he is their baby, too, after all. (And I'm so grateful for their help and their love through all of this, I can't even tell you--what would I do without them?). 

I will send photos and updates on the little man. Please send positive thoughts and vibes and prayers and whatever you do his way. They will be so appreciated from this stressed out mama!! 

One Year

It has been one year today. One year since our weekend away turned into the biggest nightmare of my life. One year since Curtis went status epilepticus and my world turned upside down. 

May 11, 2014

I still think about that day, and the events leading up to the moment that I realized what was happening to Curtis, nearly every day. My older kids still talk about it, still ask questions--sometimes they will still cry when remembering the events that took place. It was traumatic for the three of us, and remembering everything is hard. It's awful. When I think about it, I often think not only about Curtis, but about how my big kids were separated from me for a large chunk of that day while I was in the hospital room with Curtis and how they must have been so scared. I think about their resiliency and bravery and strength...my god, their strength! But despite all the bad memories, in some strange way, I think it has also made us all closer. My older kids now feel more protective of Curtis. And in this past year, I feel like I have caught a lot more moments like this: 

    

So much has changed in our family in this past year. It has truly been a year of ups and downs (mostly downs, if I'm being honest). The events of that day formed a bond between the 4 of us that I think has really helped all of us get through a lot of "yucky stuff", for lack of a better term. I love that my kids have each other. I love how my big kids love their little brother. I hope they will always watch over him and take care of him. 

Of course, these days Curtis usually doesn't want anyone taking care of him. He is, after all, in kindergarten. The big transition went OK, overall. There were a few hiccups here and there in the beginning, but after a few months he was settled in nicely. He has always been more than happy to be at school. In fact, he never looked back. Unfortunately, the year as a whole hasn't been a huge success. Despite increasing services throughout the year to try to hit his goals, he didn't meet them. Fine motor skills remain a big issue. I had some issues with his school team that I am hoping to resolve, as well. Between all of that, outside therapy services, and me working more with him at home, I'm hoping that things will pick up and he'll be back on track ASAP. His seizure meds are staying steady for now, so that shouldn't be an issue (they were increased halfway through the kinder year and they can make him drowsy and irritable...not fun when you are trying to learn...or ever!)

kindergarten musical performance

As for the seizures--we just don't know when or if another one will happen. In December, we think he had another (much smaller) seizure and his meds were increased. Since then, we haven't noticed anything. Curtis did go in for a 24-hour EEG as a precaution to check for "silent seizures", but while the EEG wasn't normal (it won't ever be...his neurons will always fire abnormally, I've been told in the past), it didn't show any seizure activity which is really good news! I can't even comprehend him having little seizures throughout that day or while he was sleeping. I know it happens, and that terrifies me.

Otherwise, we're going day-by-day. Just like most people with their "average" kids. Some days are good days, some not so good. Curtis' behavior changed a lot after his seizure and even one year later I still feel like I'm having a hard time adjusting. He screams a lot. He gets mad and frustrated more easily. It's stressful, but he's my little lover and, just like I tell him every night before bed, my "most favorite little boy in the whole wide world". 

Champions League

Finally coming off of my blogging hiatus!! Life has been so busy and crazy (I know I always say that--but it's true). 

If you follow "Lefty" on Facebook or Instagram, then you saw the photo I posted about a week and a half ago of Curtis after his first t-ball game. A few weeks ago, a friend told me about something called the Champions League, and I instantly contacted the head of the organization to see if there was still a chance to get Curtis on a team. I was SO happy when I got an email right back saying they had a spot for him. A few days later, we headed to the field for his first game.

The Champions League pairs kids with specials needs with Buddies to assist them during what I would really describe as more of a modified game/practice. During this hour, the kids and Buddies practice different baseball skills, including throwing, catching, and fielding the ball and hitting off a tee. The Buddies remain with their same Champion player the entire season, with the hope that a relationship forms and the kids get excited to head out to the field to play each Saturday. 

So far Curtis has played two games. He has absolutely loved each one of them. His Buddy (and all of the Buddies, I believe) is a high school student and he is amazing--so sweet and patient. Curtis adores him. 

Here are some of the many photos I took from the first game:

One of the coolest things is that this league was started by a 15 year old kid! I find that amazing. 

To read more about the league or to find out how to sign your child up to either be a player or a Buddy, you can visit the La Costa Youth Organization website and visit their CHAMPION DIVISION page. Until then...Go Padres!!! :)

School Daze

I am happy to report that we are done with week 3 of kindergarten! Curtis is a happy camper. In turn, mama is also a happy camper.

Here are some photos from the first day of school--

(many are repeats if you follow us on Facebook or Instagram) 

 Curtis meeting his kindergarten teacher...

Testing out his new playground...

Below is a photo from his first ever "Circle Time" in his kindergarten class. The parents were allowed to stay in the back of the room while the teacher read a book to the kids. The story was "The Kissing Hand", and it was impossible to hear the teacher read it without getting tears in my eyes and a huge lump in my throat. In fact, I was cussing her out under my breath. I wasn't alone. Curtis is in class with a few kids whose moms are my dear friends. We looked at each other with frowny faces and red eyes. These are our babies--the youngest of three kids for each of us. We wanted to run out of the class so they wouldn't see us crying, yet at the same time wanted to savor this sweet moment--to cherish every last second and stay in that room as long as we could before the last "goodbye" and hug. When the story was over, the kids were allowed to come and give us a kiss on our hand so we could keep it with us all day. Curtis choked up for a second when he said goodbye to me and I thought I was really going to start sobbing in front of everyone. I thought he might lose it, too. But then he turned around...brave boy...and he went back to his class. And I turned on my heels and bolted out of the class so neither one of us could look back.

And then...6+ hours later...we were reunited. I could not wait to get this boy back in my arms!

So how have the first 3 weeks of kindergarten been for this boy? Mostly FABULOUS. He is always all smiles when I pick him up. We have had great reports from his teacher (whom I absolutely love so far...thank GOD). The school staff is AMAZING, and SUPPORTIVE in any and all ways that I could ever have hoped for...I am so grateful for all of them. 

 I won't lie to you, though. We have had some issues. #1--we've had a few potty problems. We (teacher, nurse, supporting staff) all are still thinking that it's adjusting to new routines. The teacher and the rest of the staff are working on reminding him to use the potty. I'm working on limiting drinks before school and having him use the potty prior to heading off to class. Fatigue could also be a factor. This leads me to the next problem...#2--he's tired. Just exhausted and in a daze at the end of the day. And a sleepy Curtis is a grumpy Curtis and a grumpy Curtis is not a fun Curtis. By the time we walk home he is often crying and/or screaming at me and/or his siblings. It's a mess. With after school activities we really don't have time for naps anymore. It's an adjustment. We're still working on it. 

As far as class work goes, he seems to be doing OK. We have a formal meeting coming up in a few weeks. It's his 30 day review, and I'll be meeting with his teacher, therapists, and case manager to see how he's doing. I know he needs A LOT of work on his writing still. I see the sheets that come home and I know they are already working on it with him, but he has a long, long way to go. We are still working on it at home a little, too, when I can get him to cooperate with me. He always works much better with his therapists!

Here is a little project he worked on during the first week of school. It's a house depicting the members of his family: light blue=dad, green=mom, purple=sister, blue=him and his brother, yellow=his pets (he only included the cat and dog, no room for the 7 chickens).

So--during the second week of school I received an email in the middle of the day from his teacher. She wrote to tell me that they pulled the tricycles out during recess. The only problem? Curtis' seizure action plan has a note stating that he must wear a helmet when riding a bicycle (or a horse!). So...Curtis was not allowed to ride the tricycles and I needed to bring in a helmet for him to use at school. My initial thought? "This is crazy! It's a tricycle!" 

The seizure action plan form that his neurologist filled out had a few things that were pre-set, standard items already filled out on the form. Examples: "always wear a helmet when riding bikes or horses", "never leave alone in water", "don't linger in high places". I did not think that "bike" included tricycles. I mean...how far is he doing to fall off a trike?? Nonetheless, I know the school rules and told them I'd call the neurologist and hopefully they'd send me a note saying he could ride a trike without a helmet. What was my big deal? I didn't want him to be the only kid on the playground wearing a damn helmet! Sounds stupid, but, yes, that was it. I just really would rather he not stand out in any way if at all possible. However, in the meantime, I sent him to school with a helmet. He loves to ride trikes and I didn't want him to miss the opportunity the next day while we waited to hear back from the neurologist! (See below...in our driveway on his own trike.) 

So I left a voicemail with his neurologist and a day later heard back from her assistant. Here's the deal--she DOES want him wearing a helmet. Even on a tricycle!! 

Wow. Lesson learned.

Here he is at home...now wearing a helmet at all times on his tricycle!

More fun happened during that second week of school! We received a call one morning that Curtis was stung in the face by a bee. He went to the nurse's office and said he felt OK to go back to class but they called to let us know it happened. I'm proud he was so brave to stay in class!  Not sure my older kids would have chosen to do so!

This is a photo of him from later that night--he was stung right below his left eye. You can see how it was starting to swell up later that night. 

So...the next morning when he woke up it looked like this!! YIKES!!!

We decided it was probably best to not send him to school looking like this. He went to the pediatrician in the morning and checked out OK and ended up back at school at around lunch time. It took a good 4 days for the swelling around that eye to go away. Terrible!! My poor buddy!

As if things haven't been crazy enough with trying to adjust to new school schedules and running around AFTER school with big bro and sis to all their stuff--Curtis just decided this week that he absolutely had to get back to swim lessons. I agreed that he was long overdue! We have been meaning to get him back for weeks now, but couldn't figure out how to work them in. Well, there's no time better than the present, and we squeezed those lessons in. Thursday was his first official day back at Callan Swim School and he did great. All the swimming at grandma and grandpa's this summer surely helped!! 

{Sorry, no swimming photos--next time!}

We are ready to tackle week 4. I think every week is just going to get better and better. Will we/he figure out the potty issues? Yes, (god, I hope so!). Will the fatigue and grouchiness go away? I think he's still just adjusting so, yes, I do think it will. The academic stuff? Handwriting and whatnot? He is finally starting his therapy services and I just know that I will start to see a huge improvement once those go into full effect (especially once OT gets cracking!) 

Like I said at the beginning--he's happy. He wants to go to school and is comfortable there and hasn't cried or whined or ever said that he doesn't want to go. To me, that is success! That is half the battle, maybe more than half the battle! The other things we can work on as long as he's content with being at school. 

So, I say YAY!!!