HE'S NOT HEAVY - HE'S MY SON

People do things in life because it is important to them. People are typically motivated to do things, if they know the answer to the question "why". If the "why" is strong enough, people can do amazing things.

I often have people in awe over the fact that I exercise regularly. It is nothing unique with that, many do that. What surprises many is that I do it in crisis too. Many of my dear fitness instructors and friends follow Jacob's journey. They know when he is inpatient and there I am lifting weights or doing jumping jacks at 5:30 am in the morning. My PICU nurses and attending doctors look out the window to see me running around the hospital during morning shift change. They all wonder what has gotten into this sleep deprived mom in crisis.

And this is the secret. I had years with Jacob when I literally never knew if I would end the day in my own bed or in a hospital bed next to Jacob. His health was so shaky, and he got so very sick out of nowhere. My life was out of control. The one thing I could control was to do something good for me. Find an hour in the day when I worked my body so hard that the pain in my legs and the heavy breathing became more present than my worry for Jacob. An hour that gave me more energy than sleep or food. An hour dedicated to me. An hour that made me a little bit better as a sleep-deprived, worried, and often very sad mama.

I remember one specific occasion very well. I had given it my all in an early spin class. My tank top and bike shorts were cold to my body from the sweat. All I wanted to do was to change clothes and jump in the shower. Jacob had other plans for me. He was having a grand mal seizure when I entered the house. I quickly called 911, and shortly we were off in an ambulance to Children's. Due to Jacob being so unstable, I was told to sit up front. They didn't want me back in the ambulance with Jacob. This is something I don't allow any longer, but I didn't know I could negotiate that back then. As we were cruising down I-25 in rush hour with the sirens on, I was deadly cold in my black workout clothes. I started to shiver from being cold and not knowing what was going on with Jacob in the back of the ambulance. I had to greet all the doctors and nurses in my very fashionable outfit of the day. The hair wet from sweat in an impossible ponytail, and knowing that I smelled...I don't remember how I finally got out of the clothes, but I do think my husband came to the rescue eventually and brought in some decent clothes...

Over the years, exercise has become my go to outlet for stress and remembering myself in the middle of giving it my all to my child who needs me every hour of the day. I do something good for me. If you know me well, you know I get cranky if I don't get my workout fix.

And from a place of survival, I found a love. A love I can share with my hubby and friends. Showing my daughter madly in love with volleyball that her mom can carry 70 pounds of her brother  anywhere he wants to go.

In Jacob's room we have this painting from Jacob's preschool Bal Swan with the saying "He is not heavy - he is my brother". And that everyone is my "why" I exercise at crazy hours of the day. "He is not heavy - he is my son".

Love, Maria.

A LOVE HATE RELATIONSHIP TO FALL

It is fall, one of my favorite seasons. I love fall weather. I enjoy the warm sun, the crisp air, and cool temperatures at night. I love fall clothes - sweaters, jeans, and boots. I love to lit a candle or two in the darkness of the evening. I love my hot drinks spiced with pumpkin. I love my house decorated in warm colors. I love our front porch being decorated by pumpkins of all colors. I love the leaves turning color. I love the smell of Sarah's baking. I love fall crafts. I love that we can do things a little easier as a family. Fall weather fits Jacob well, not too hot or not too cold.

Back at the pumpkin patch this morning.

Fall is also the time when Jacob typically starts to have trouble with his health. For years, Jacob struggled with uncontrolled seizures every fall. The last couple of years, Jacob has struggled with colitis. And the time has come once again. This week we seem to be facing the familiar ugly face of colitis once again. Tummy is distended, stool is loose and frequent, and it is hurting our boy. Jacob is on his second round of GI antibiotics in less than a month. If things don't improve, we will have to increase his steroids this weekend. If we can't keep the colitis under control or if Jacob shows signs of adrenaline insufficiency, we will have to take a trip down to Children's. We're hoping we are able to manage this at home, but only time will tell.

As I am worried about Jacob's tummy, I wanted to leave you with a special moment from today. Today, it was time for Jacob's parent-teacher conference. It was a good meeting, and it is the first time I have been teary eyed in a school conference. The kids who have been working with Jacob this fall all wrote him letters. This one is my favorite.

Dear Jacob,
I loved when I got to pick leaves with you. It was really fun when I cut out the leaves and made them fall. I really enjoyed it when we collected leaves together. I loved it when you were with me, and I would not let one thing happen to you, cause I love you, but only as a friend. Sometimes, I think what would happen if you weren't in my life. If you were really sick than I would ball my eyes out, if one thing happened to you. By the way this is from your friend Olivia to Jacob.

Sarah reading the letters to Jacob.

We hope we get to continue to enjoy this beautiful fall, and keep our boy home and healthy. I'll keep you posted...

Love, Maria.

TIME FOR PUMPKINS!

Today was another perfect fall day in Colorado. We decided to head to Cottonwood farms. This is a smaller pumpkin patch, and it is our favorite one. It is easy to get Jacob around in his stroller, even on the actual pumpkin field. Jacob just got a new larger stroller, so this is the first time he couldn't do the corn maze. The stroller is simply too big for the tight corners. Sarah and Joakim also got lost in the large corn maze...

Sarah in the corn maze! 

Jacob out on the pumpkin field.

So hard to pick...

Our selection.

Jacob having a good day!

Showing off the new cool stroller!

Us.

Two tired boys watching the Broncos game.

Our pumpkins will over the coming weeks turn purple. We have participated in the Purple Pumpkin Project to raise awareness for Epilepsy over the last couple of years. Jacob often struggles with seizures right around Halloween, so the timing is right for us. For now the pumpkins are orange on the front porch.

Jacob also talked himself out of speech therapy this week. If Brittany bikes with mom, she better takes Jacob too! Here they are on a bike ride around the neighborhood.

We love Colorado fall, and so far we have had a healthy fall! We hope it will continue this way.

Love, Maria.

WHY WE LOVE COLORADO!

Grandpa was saying that he hasn't seen anything on the blog in a while. The reason is that things are good! We are in a good old routine right now. I am going to school four times a week, and I love it. The more years I spend at Coyote Ridge, the smoother the school start seems to be. More kids know me, and more kids want to be with me. I am simply having a blast! When I am not in school, I am busy with therapies before or after school. My secretions are at an ultimate best right now, and I can only hope it continues that way.

Today, I did something I haven't done in many years. I was up on 9,700 feet altitude, and I rocked it! I had no problem with the altitude in the mountain town Nederland. I typically seize at high altitudes, but not today. Yay for me!

We continued on to Estes Park for lunch and a stroll along the river. I had a great time enjoying the fall colors, and I hope we can make it up there again before all the beautiful leaves are gone.

And this is why we love Colorado:

 Sis and I are watching a movie together.

Dad & Sarah in Raymond.

Beautiful leaves somewhere along Peak to Peak highway.

Raymond, mom loves to bike here in the summer.

Sis and mom in Estes.

My beautiful sis.

Outside Nederland.

Mom & sis along Peak to Peak highway.

Love in Raymond.

Mom & dad.

Sis & I in Estes.

How is sis always getting a Starbuck's?

Us.

Me.

Happy fall everyone!

Love, Jacob.

MAKING THE IMPOSSIBLE POSSIBLE

Jacob's Physical Therapist Jill writes about what Jacob has taught her in light of Mitochondrial Awareness Week.


As a therapist, I love to see people do things that seem impossible. If you look at the symptoms that go along with a mitochondrial disorder, being able to move, talk, and play seem impossible. Having the energy for independent breathing seems impossible. Certainly riding a bike, teasing your sister, asking for time with dad, and telling your mom that you love her seem impossible.

Jacob can't voluntarily move any of the joints in his body. And when I met Jacob, he was only able to sit for about one minute, with lots of support--and even a lot of worry about how his breathing would hold up. In the year and a half that I've known Jacob, I've watched him do and inspire the impossible over and over.  



Jacob now sits up for 10+ minutes at a time, and often, his breathing is better when we are sitting up together (working hard!) than when he's laying down. Jacob uses his talker to tell his family and his nurses what he wants (even if what he wants is NOT to do his homework!). Jacob rides a bike, stands up in his stander, and can even fly (in his ceiling lift sling)!

As a therapist, I couldn't really ask for more heart or more inspiration than this. Jacob has taught me a lot about what is possible under conditions that seem impossible. It seemed impossible to have a ceiling lift installed in a home. It seemed impossible for Maria to bike through the Rockies. It seemed impossible to raise so much money just for mito research. It certainly seemed impossible for Jacob to do many of the things he does each day. 

 

I've loved being surprised by Jacob over and over as Maria sends me pictures and tells me stories of Jacob biking and swimming and sitting with Sarah, making friends at school, and inspiring everyone around him to try what seems impossible--for you just never know what you might accomplish if only you take that first step, write that first letter, climb that first hill, or sit up that first time. Thank you, Jacob, for surprising and inspiring me each week! 

 

Love,

Jill

JUST BECAUSE...

Mom has been slacking off with my blog lately. Instead she is spending any free time in our basement. Our basement is an oasis of gift baskets, wrapping paper, cellophane, gift cards, clip boards, and spreadsheets. It looks like a craft studio! It is time for Miracles for Mito's annual Silent Auction dinner in about a week's time, and mom is working on all those little details to come together.

Just because mom is busy, I didn't want you to miss out on my school start this year. Things are really going well. I have a great school team supporting me this year. My classmates are awesome. They are all pretty comfortable with me, and sometimes there is a little arguing about who is going to be my reading buddy for the day. That feels good! They are pretty psyched when I use my talker as well. I love when my classmate Lucy asks: "does Jacob want to participate?" There is of course only one answer to that question.

I have a beautiful very sweet teacher this year. My SSN teacher is new to the school, but I can tell she is excited to work with me. I have my cool OT Mrs. Peggy who is my most awesome partner in Specials. We are just rocking it in PE (Physical Education)! Talking about PE, Coach Mo makes PE my favorite subject. Who would have guessed? There is always a life lesson to learn in PE. Yesterday we learned about empathy. He has also proven to me there is absolutely nothing I can't do in his class despite my wheel chair. We just modify things a little, and I am right there with my buddies. Mrs. Katie works with me and my talker. She makes speech fun by always having me pick a friend to work with.

And then there is Nirma. I am one lucky guy to have Nirma all to myself at school. She helps me with my school work, and is there to help with whatever I need throughout the day. We are a good team. And let's not forget nurse Gemma. Mom would simply not let me go to school without her. She is mom's eyes and ears. She will make sure I stay healthy and safe at all times. It is just a little unusual for Gemma to not have to do everything for me. She often is more in the background, ready to jump in whenever I need something. She is pretty good at capturing pictures for my mom though. Take a peak at my school year so far.

Time for music!

Nirma and I in the gym.

People always think I have cool sunglasses on the playground. That Colorado sun is pretty darn strong!

Me and my friends. Recess is the best.

PE time once again!

Having fun in the classroom!

I am letting her win in Bumper cars...just once!

One of my reading buddies.

Mrs. Peggy is talking about what empathy means. She is a smart cookie (and a lot of fun)!

Apart from school, I am doing well. We have a nasty respiratory virus going around in Colorado right now that has landed many kids in the hospital. We're all fearing it's going to hit me, since the treatments for the virus is something I already have to do every day. I am already stuck with oxygen and nebulizer treatments, so not sure how my lungs would handle a virus like this. If we have to take a break from school to keep me safe, we'll do it. It's just that there is nothing better than school.

Sis is a busy bee. School, volleyball and friends are her life ingredients right now. She is playing on the school volleyball team, and she will play club volleyball this year again. I have to admit, she is pretty good with that ball. Dad is becoming a health freak. Mom was always the one running and biking, but dad has now joined her. They are doing a half marathon relay together in October. I hope to watch them at the finish line. Fall is coming to Colorado, and I love the cooler temperatures. Mom says Colorado fall reminds her of a good Swedish summer day.

That's it for now. I hope to continue to stay healthy and make more memories at school!

Love, Jacob.

WE HAVE A 2ND GRADER!

Most special needs parents I know have to battle for their kids' rights in school. They have to advocate for a learning environment that works for their children. There are some battles that never seem to disappear. Others do get resolved, and might even turn into success stories.

This is Jacob's third year at Coyote Ridge. The first time I went into the school building for Jacob's IEP meeting was not a pleasant experience. All the high shots in the school district were crammed into a small conference room. They refused to listen to a single argument why we wanted Jacob to go to his current school Bal Swan for one more year. There was absolutely nothing about Jacob the school couldn't handle. I usually can hold my own, but I do remember crying in this meeting since it was like talking to a big brick wall. I felt defeated. I felt I didn't advocate well for my Jacob. I do remember the principal standing up, and telling the whole crowd that her school was not ready to meet Jacob's requirements. The room got silent. The principal admitted that her school wasn't set up to meet our boy's requirements, something we knew too. After her statement, the school district planned for Jacob to attend Bal Swan for that school year.

This week as we were driving into the parking lot of Coyote Ridge, I remembered that awful IEP meeting. With the principal's courage and always advocating for Jacob, we have been able to create so many wonderful memories at this elementary school. We are today excited to have Jacob start his 3rd year here. His principal didn't just stand up for Jacob, she took that year to truly learn what her school had to do in order to make it a safe environment for Jacob. Today, there is not a question about hand sanitizers. The question is how many we need and where they will be placed so all kids can use them going in and out of the classroom with Jacob. It is like music to my ears.

This year, Jacob will go to school four days per week. We will use Wednesdays for therapies and doctor's appointments. Our boy has busy weeks ahead of him. Jacob's school team is a combination of old and new faces. Jacob has new and old classmates in his class this year. We're getting to know his 2nd grade teacher and the school's new special education teacher. We are hugging his fantastic para and his school therapists who have been with Jacob from the start. And then it is nurse Gemma. I would never feel as comfortable driving away from school, if it weren't for her. I know whatever is going on in the classroom, she will always make sure our boy has what he needs and for him to get the most out of each day.

I'll leave you with a few photos from our first week of school.

We are definitely off to a great school year! Let's just hope that Jacob's health cooperates, so we can be at school all the way through Halloween!

Love, Maria.