Last Day of School

How can this be? How can another school year be complete? How can my baby almost be a first grader? I'm not sure I can deal with all of this!!!!  Even though dad is still gone and I'm doing this alone, I managed to get the official end of the year pictures in front of our door; it might have been a scramble, but we did it. 

Jayen really had some amazing support this year. His classroom teacher, Mrs. Mullins, tried to include him in most of the activities in the classroom. One of the activities she was working on she needed a little assistance from me. She sent home a note asking me to put some options on his communication device so he could tell her what he wanted to be when he grows up. I was asking Jayen and giving him options and we came up with pilot, garbage truck driver, basketball player and an airman. I really thought I knew what would be the winner, but I was completely blown away at home when he kept answering the same thing. I didn't say anything to school because I wanted to see if he would change it at all. I giggled when I was sent this photo today. He didn't change at all! He wants to be an airman, just like his daddy, when he grows up. I think he would make the best airman ever! I think he would learn a job and be able to do it proficiently. He would show up on time and he wouldn't be getting in trouble outside of work. Unfortunately, being an airman is one of those things I cried for when he was first diagnosed. I wasn't crying that he had epilepsy and my world would be infinitely harder, I cried and continue to cry because he isn't able to take advantage of all life has to offer. He will be denied many things because of his pre-existing condition. But I will promise to always give you every opportunity I can and make this life a happy one. 

Another one of the great supports Jayen had this year was his amazing para Mrs. Elise. Jayen and her really shared a super special bond. He begs to see her every morning and even on weekends. They even had a secret handshake and ended each day with it. I have loved having her as a second mom to Jayen. I know that he was in great hands with her and she tried to push him to achieve all he could. Thank you for loving my son like your own Elise. We will miss you this summer but can't wait to have you back next year!

I didn't get a picture with her and Jayen, but I also need to share another person who has been an amazing support for Jayen this year; Mrs. Lake. As a first year teacher in a special education classroom I cannot believe she not only survived this year but did an amazing job as well. Thank you Mrs. Lake for always being open to my crazy ideas and supporting my son. We are so proud to have you as his teacher and also look forward to having you again next year. 

This year may have been a struggle. We may have shed some tears here and there, but we made it out on the other side alive; a little taller and a little smarter! 

Kindergarten graduation pictures

Since the school here won't do a Kindergarten graduation, I decided to take matters into my own hands. I think Kindergarten graduation is a right of passage. I feel that every child should be given that right. It gives them something to look forward to. It gives them something to work towards for the next 12 years. And it makes for some amazingly cute pictures. Well, since they won't do it, I will! My friend, Shannon, is a local photographer so I reached out to her and begged her to squeeze us in for some quick photos of Jayen. I ordered a cap and gown and we were ready to go. Cue some amazingly gross fart noises courtesy of YouTube and we have the cutest little Kindergarten graduate I know! These could not have turned out any cuter!!!! 

She even made sure we got some of all the kids together! This is what I wanted for Mother's Day. These are the memories I want to keep and cherish forever. They are loving each other. They look like they actually are getting along. You can't hear them fighting. You can't see them hitting. They actually like one another. These are my loves; pieces of my heart walking around on this earth. Thank you Shannon for capturing this moment in time. Your talents are amazing!

Water Day at School

I don't get a lot of opportunities to volunteer at the kids' school, so when this one came up and I could work out the details I jumped on the chance. The kindergarten classes were having a water day to celebrate the end of the school year. They needed parents to help run some of the activities. I was super excited to see Jayen but not be his shadow. I could watch from the shadows and see how he does with his friends. I wanted to see how he interacts with them. Who he interacts with. If his interactions are appropriate. I just wanted to know if my son had friends. True Friends.

At first Jayen avoided my station and kind of hid on the sidelines as to not get wet. When we were in between groups I would run over and try to convince him to get wet or get Ms. Elise wet. He loves his water squirter at home. Why wouldn't he use the one here? After a few rounds, the kids took a break for a drink and snack. Jayen found his friend Eli and sat by him. I knew Eli was a good friend and appreciate that he lives a couple houses down from us so Jayen can play with him outside of school. But other than Eli I didn't see a lot of friends talking to Jayen.

After snack was finished the kids found new stations again. I knew Jayen still hadn't been to mine, so I pulled him into another group and made him do it. The kids were cheering on their teammates and excited to keep the game going. It was fun to hear them chant Jayen's name. It was so nice seeing him be part of a team. 

After another break for lunch and some stolen selfies, it was time for mom to go. I wish that Jayen had more friends that asked him to join them, but I am thankful for the ones he does have. He seems to have some quality friends. There are even a few girls who are quite sweet towards him. One in particular thinks she will someday marry Jayen. Well I can't say I'm opposed, but you might need to move to Nebraska!!!! 

Such a fun day hanging with my little man! Hope I can do it again!

3 Word INDEPENDENT Sentence

I cannot tell you how hard we have worked for this moment. Jayen goes to therapy 4 days a week and they come to him 2 days. We've been doing outpatient therapy since he was 6 months old.

But today was one of those moments when you realize why you keep killing yourself getting him there. Today was one of those Ah ha moments! Speech has always been hard for Jayen, but today I saw the glimmer of hope I needed. Today he said a three word sentence independently. He wanted milk and first told me, "I see milk." Then quickly realized what he said and changed it to, "I want milk.

I'm so proud of you Jayen! Keep working hard and you will move mountains!

Happy Mother's Day!

Daddy is still gone so I knew not to expect much this Mother's Day, but to my surprise my friends Tina, Tori and Reagan made sure I felt special today. Tina had been planning something for a while now because she somehow managed to have each of the kids answer questions about me. She even had one of Jayen's therapists help out and get Jayen's answers. Then today she and Tori tracked me down on base to find me and give me the flowers the kids say I liked, the food they thought was my favorite (anything that doesn't make me fat, chocolate and tater tots) and the sweetest kindest note. Being a military spouse is no easy feat and being a mother of a special needs child isn't either. We are bonded by some amazing circumstances and I'm grateful. You truly made this day more special then I ever imagined. Thank you from the bottom of my heart!

I knew I would have to create my own fun today, so after church I made the kids take me out to eat to Pei Wei. They weren't the best of kids, but they weren't the worst either. I guess I'll take it as a win!

Although daddy couldn't be here and I couldn't be with my own mom, we made the best of today. These little munchkins are the reason I get to celebrate today and I wouldn't want to be without them. Happy Mother's Day to all the special moms out there.

Jarrar follow up

I had been having a lot of difficulty scheduling our follow-up with Jayen's epileptologist and had to take an appointment months after it was supposed to be scheduled. I was really worried about waiting since I knew we wanted to start weaning one of the medications again. I really needed the guidance and assurance that this was the right move. After some back and forth with the nurse, we were squeezed into a spot and able to see her today.
I really feel comfortable with Dr. Jarrar. She has an amazing memory and knows us like we just talked last week. I really wanted to discuss with her coming down/off of the Clorazepate again. We tried about 6 months ago and had to stop the wean because of Jayen's behavior. We have since added a little extra lamotrigine to help stabilize his mood as well as increasing his Concerta. With those changes I feel we are in a different place to be able to try the decrease again. Dr. Jarrar agreed and was excited. But I think she felt my trepidation as well. She encouraged me to take it as slow as I like. Maybe just get down to half a pill twice a day and hold there for a while. There is no rush for taking him off of it. This mom just wants to eliminate or reduce the side effects from each of the medications he is taking.
Dr. Jarrar wanted to talk to us about something she has been passionate about. She recently because a wish granter for Make-A-Wish^® foundation. Throughout her career she had nominated kids whom had less time on this earth than most think appropriate, but through her training to become a wish granter the organization taught her that wishes can be granted for any child suffering from a life threatening condition. Make-A-Wish^® has sometimes been incorrectly portrayed as an organization that grants wishes to children who are terminally ill. Their eligibility criteria stipulate that a child must be diagnosed with a life-threatening medical condition, not a terminal condition. She continued to convince us that Jayen would be a perfect candidate. I was very skeptical but listened to her. We applied in Nebraska before Jayen's brain surgery but didn't have enough time. Then we moved and didn't pursue it here. I figured by now Jayen wouldn't even qualify.
The appointment went well and I left feeling hopeful for Jayen's future. He is on a good path now and I hope us weaning this medication doesn't change any of that.

Awards Ceremony and Secret Visitor

I had received an email from the physical education teacher at the boys' school that Dalan would be receiving a very special end of the year award for all of his hard work and dedication. I was not surprised, but I was honored for him. He truly is such an amazing kid and tries to always keep others in mind. I couldn't wait for his name to be called so I could show him how much I love him and appreciate him always being amazing. But I wasn't ready for Jayen to be called. Usually a note is sent home the week before letting you know your child would be receiving an award, but someone forgot to send it home or let me know. I was so shocked and excited for him. I love when he gets recognized for his hard work too!!

As if the day wasn't special enough, we had a SUPER SPECIAL SURPRISE visitor join Jayen for lunch today. Our friend, Olivia from Minnesota, was in town and wanted to make sure she got to see Jayen. Olivia was in the hospital the same time as Jayen having brain surgery. We really connected to her and her family and are so happy technology has helped us stay in touch. They let me know a while ago that they would be in town and we worked out the details so they could come surprise him at school during lunch. I wish lunch was longer. Jayen had enough time to hug everyone and take a few bites before he had to take off again. Thanks to his amazing teacher, Dalan was also able to stop by and quickly say hi. Since lunch time is so short, Brilyn and I were able to go out for lunch with Olivia and her family and catch up a little more. I didn't want to let them go. Distance has separated us, but there is a bond that can never be broken between our families. You are forever in our hearts and minds Olivia. Keep growing into the amazing young lady you are.

Allergies?

Jayen has been struggling with itchy eyes for weeks now and just can't find relief. I was able to get him into the pediatrician the other day and have been giving him prescription eye drops since then but the doctor also put in a referral for an allergist. Today is the day I have been waiting for just as much as I have been stressing about it. Daddy is still gone and mommy has been worried about how to hold down this kid that morphs into the Incredible Hulk as soon as a needle enters a room he occupies. Now I'm going to have to hold him still so they can put 10 needles into him. HAHAHA yeah, this isn't going to happen. But he can't continue to suffer like he does either. So we pull up our pants and take a deep breath and talk to him about it. We practiced on mommy, used distraction techniques, had movies on in the background, let him draw on himself and me with the marker used to identify each allergen placed on his back, and did nearly anything he wanted to get through this test.

In the end I was BEYOND proud of him. He wasn't happy about the pricks on his back but he let us continue until all 10 were complete. He was more upset about me taking his shirt off so it wouldn't rub on the samples. After 20 minutes or so the nurse came in and measured the spots. There wasn't a single reaction to outdoor allergens. He had only the slightest reaction to cockroaches, but I was informed by the doctor that everyone is. How could this be? His eyes are bloodshot every time we are outside for more than 5 minutes. He is in so much distress because of the irritation in his eyes but he isn't allergic to anything?
After talking with the doctor she agreed that something is irritating him and thought we should keep him on the eye drops as well as starting him on Flonase and Claritin. So I guess for not having allergies, we are still treating him with allergy medicine? Ok then! As long as he has some relief.

After baseball treat

We are all still in gloomy moods from dad leaving so a little cheering up was needed. Dalan had a baseball game today so afterwards we headed to Freddy's for some lunch. Nothing makes a sad day better than fried pickles! We can't have daddy here so we need some exciting things in our lives. The weekends are definitely the hardest and loneliest. One weekend down 6 more to go!

Itchy Eyes

This little man can't seem to catch a break. He has been in screaming fits because his eyes are itching him. I don't know what to do. Time to get him in to see the doctor.

Rare Bear

A few months ago we were approached through the International FoxG1 foundation with an opportunity to receive a rare bear.

RARE Science has initiated the RARE Bear program, a grassroots community-driven outreach for kids with rare disease. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids. http://www.rarescience.org/rare-bear-program/

Well today a special package arrived with the cutest little RARE bear inside. Jayen took to the bear right away. I don't know if he realized where it came from or what it meant, but he sure seemed to have a connection to it immediately. The bear is truly as rare as he is!
Thank you RARE Science and your team of volunteer quilters for making my son feel so special!
He may have needed a little extra loving today.

Heartbreaking

Waking up this morning to an empty bed was heartbreaking. Knowing it will be empty for the next 6 weeks was even more heartbreaking. But life doesn't stop and we need to keep moving. The kids went to school as usual, I went to the gym, we went to therapy, drove to baseball practice, etc.
But there was a moment today a smile crossed my face. My friend Katie handed me a little box with the most special gift inside. She gave me a bracelet that had a puzzle piece embellishment on it. She thought of me and our life. Thank you Katie for the glimmer of happiness is this sad day. With friends like you, we can get through this!

Our last day with dad

This day is such a sad day that I don't know if celebration is the right word for it, but we tried to celebrate as much as we could. We knew the inevitable was upon us and tomorrow morning when we wake up a piece of our hearts will be missing. So tonight we spend time together; every second we can squeeze out of this day.

One of the things we love to do together is make sushi. We celebrated and toasted to a good trip for dad and good kids for mom. When we were done we finished the night with some cascarónes. After the Easter fiasco we wanted to try to introduce them to Jayen again in a safe environment. We want to try to help him work through his fears We never shy away from things that scare him. We want to expose him to them and help him understand his feelings. We took them with us on vacation but never found the right time to do them. Well, I guess now was as good of time as any. But this time went just as well as the first time did. Jayen still wanted nothing to do with them. He screamed and cried and threw a fit (and the broom). It wasn't the end of the night we were hoping it would be, but it was a good laugh for the rest of us.

Thankfully Kerrie was able to lighten the mood when she brought over this amazing surprise. She took a picture from our vacation and printed it on acrylic with a texture print. She said that even though Matt wouldn't be close enough to feel us that he could feel this picture of us and feel near. What a thoughtful gift. Thank you Kerrie for being such a great, thoughtful friend!

We love you Matt and will miss you horribly. Be safe! Come home soon!