Alyssa Leolani

On a typical day for Jagger, he goes to a therapeutic school where he has about 6-8 hours of different types of therapies, such as speech and language, feeding therapy, social skills, music and movement, occupational therapy or ABA therapy. His typical day is pretty rigorous and structured, which means MY typical day is pretty rigorous and structured.

Growing up I lost my wallet about every other week, and couldn’t seem to remember which freeway to get on in order to get me home, so it’s ironic and kind of hilarious that I am forced to be so organized and mindful now.

I have gotten pretty good at being orderly and systematized though it completely goes against my nature of being laid back and carefree. If we didn’t have the desperate need for these therapies, we would be the family that is very slow moving in the mornings…

But our mornings now are in hyper drive.

I wake up jumping out of bed and rushing to get myself ready, the kids ready, breakfast done, lunches made, backpacks arranged, and teeth brushed in a very short amount of time. I usually wake up pretty frazzled. As much as I crave it and want it, I can’t have a lazy morning because not only does Jagger need school, there are teachers and therapists waiting on me. Their paychecks are dependent on Jagger being there, so I feel the pressure of being organized all. the. time.

But there are occasional mornings when I wake up and I can’t take it anymore!

I cannot go one more day living such a structured scheduled life. I refuse! I miss the spontaneity of doing whatever I want with my kids whenever I want! I miss my son! I sometimes feel a little resentful that I have to send Jagger off to school everyday for most of the day and then still share him with a therapist in our home afterwards. I don’t have many days that I get him all to myself, and that’s hard.

So naturally there are days when I just want to keep him to myself. I know it is selfish because of how much he needs the therapies but I ache for my son and sometimes I don’t want to share him.

Over time these emotions will just build up and build up and build up until I can’t handle it anymore, and I go rogue. We go MIA, we go off script and I make a lot of people frustrated because I just pull Jagger out quickly with hardly any notice. I turn the car around on the way to school and say “nope, not today!” I cannot help myself.

I am a secretary with impeccable organizational skills, a great coordinator of schedules and appointments, a chauffeur who plays all the Disney hits in my car, an aspiring chef who caters to picky eaters… the skills/talents section of my resume is definitely growing but the core of me remains the same. I am a mother. And the core of me aches for my son.

Jagger turned 4 today, and I thought that I would just bring some cupcakes and balloons to his class. I kept thinking of different things I could do to make the day special, but I wasn’t sure he would recognize it as special when he would be working just as hard as he does on every other school day. So I made a last minute decision. The wild haired, crazy, free-spirited beast that I try so hard to keep locked down deep inside me started lashing out, and I started feeling the pressure to uncuff my scheduled shackles…

(insert Squints Palladorous screaming

“I can’t take it anymore” 

after months of pent up emotion for Wendy Peffercorn).

I could not take it anymore, not today. The free-spirit inside made a very appealing argument, and I was persuaded. I decided to cancel all therapies and school, and take my kids to Disneyland, because it just hit me how far my little man had come since his last birthday.

One year ago Jagger was not talking. On his third birthday he was given a double diagnosis of Autism and Intellectual Delay. One year ago my husband and I were scared and unsure of what to do to move forward and help Jagger succeed. He woke up in the night multiple times, and then would wake up very early. He kept getting very sick with tonsillitis and ear infections but couldn’t communicate the pain to us since he didn’t talk. Jagger was aggressive and would lash out at us, his little sister, and anyone on the playground. One year ago life was very challenging, and we had no idea what level of functioning Jagger would be at.

One year later, Jagger now talks. We continued to find the right school, specialists and therapists to help with his speech, behaviors, aggression, sicknesses and sleep. Now on his 4^th birthday, Jagger’s speech, sleep, aggression, health, and behavior have all improved drastically, so much so that the school district was blown away when they observed him again for this year’s IEP in comparison to what they saw last year. It just hit me as I was getting ready to send my son off to school that today we celebrate how far my little man has come in one year. And there is A LOT to celebrate.

So off we went to the land of magic, and we had a marvelous time. For just one day, there were no therapies or therapists. No one was hovering over us watching Jagger’s every behavior or watching how I parent. Instead of hours of speech and language therapy disguised as structured play at school, Jagger was able to just play for hours and hours just like any other typical 4 year old boy. We went on every single ride he wanted, and we had all the sweet treats he wanted. We ran from place to place with Jovi in tow, and he just beamed the whole time.

I savored every single moment I got with him.

My heart swelled with each elated laugh and bright smile. As the day wore on, my kids gradually wore themselves out. We were on our way out of the park, and I caught sight of the Mickey balloons. Oh you know, the balloons that are so crazy expensive you would never even consider stopping to look at them on any other day because you could never ever justify spending $9 on a freakin balloon? Yeah those are the ones! We stopped and I asked Jagger if he wanted a balloon. Jagger’s eyes (as well as Jovi’s) quickly lit up, and he jumped from the stroller. He was so happy in that moment that I probably would have paid $100 for that stupid balloon. We left the park and my kids were asleep but still somehow holding tightly to their balloons. My feet were so tired, and I was so sweaty from a long day of carrying two heavy toddlers but my heart was so joyful and grateful.

We ended the day at home with minion cupcakes and a few gifts with Dad. It was absolutely perfect.

The next day my kids were so tired that I let Jagger stay home from school again. As the day wore on I could tell that our everyday relaxed activities were enough stimulation for Jovi but Jagger seemed… understimulated. Bored. Itchy for more advanced academic activities.

My heart sank as my Disney bubble burst and I was brought back to reality.

I was reminded that Jagger needs more than I can provide on a daily basis, and that realization broke my heart a little bit. I had gotten my hopes up after we had one really fun full day together that maybe, just maybe he would be okay at home with me and Jovi, and that suddenly he would be able to learn what he needs to at home and that we could be a typical family doing typical summer activities together. Maybe just maybe I could keep him. The biggest most painful reminder of all was that this is not about me. Jagger needs school and help outside of the home more than I need him in the home. Though the pain is a little bit more than I can take on some days, I need to continue to be strong and make the sacrifices needed now so that in the future we can have more free days together.

That night we laid on the trampoline together, and Jagger let his Mickey balloon go into the sky. We jumped, and danced around and waved goodbye to Mickey for as long as we could still see him. It seemed like a fitting way to end the 2 days of celebration. After we couldn’t see the balloon anymore, we went inside and got them to sleep.

I kissed my little boy goodnight, and as I knelt down to say my nighttime prayer, I decided to focus more on what I was grateful for instead of what my heart ached for.

As I did this I felt a reassuring peace that it will all work out one day. I felt a gentle reminder that though our balloon floated high in the sky, Heaven was even higher than that balloon. There is a Heavenly Father who hears my prayers, and a Savior who feels my pain. I wondered how many prayers are said each night from the depths of a broken-hearted mother. I bet if the deep pleading prayers from mothers were sent off like balloons each night, the sky would be filled with hundreds of thousands of balloons hurriedly trying to make their way up to our Maker. This imagery gave me peace as I suddenly didn’t feel so alone anymore.

I said Amen for the night, and drifted off into a deep sleep thinking about a moonlit sky filled with balloons.