Strength is also weakness

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What is behind that smile?

My love for my kids overflows and makes my world turn. They are my greatest accomplishments and bring me my greatest joy. There is not a thing I wouldn’t do for them to keep them happy and healthy.

I juggle many roles throughout that day. Mom, wife, advocate, banker, maid, taxi, and scheduler.
I am always on point to make sure that Jacoby has everything he needs, that all his meds and medical supplies are ordered, check his feet and back for sore spots and make sure the school is ready for him as I leave him there in their care for the day.

I make a point to ensure I can take the kids to all their appointments and that when I work evenings, food and clothes are taken care of so that Josh doesn’t have to worry about it when he gets home.

I make sure I can be the best person for my kids and my husband and that there is nothing left unanswered or not done that can cause conflict with their day to day lives

Many people say I am the strongest person they know. That they don’t know how I do it. That I was meant to be Jacoby’s mom and that I was given the situation I have because I am the perfect person to handle it.

Do you know how much pressure that is?

Sometimes when you are being so strong for everyone else, you become weak for yourself.

I had a real eye opening conversation today that I want to communicate to many of my special needs parents.

If you are being so strong for everyone else, who is being strong for you?

Fair enough question.

Fact: it is a stressful world. There are moments when I forget to catch my breath because everything has to be done now, nothing can wait. If it is not one thing it’s another. There is always something on the to do list.

When we don’t take care of ourselves, who takes care of us? And if we get sick, do we actually take a break to get better or keep on trucking through?

The one thing that is hard to think about and believe is that it is OK to break. It is OK to not always be ok.
It is ok to cry. It is ok to have a bad day. It is ok to struggle, to get angry, to get jealous, to feel life is unfair. It is OK to FEEL. It is ok to be HUMAN.

I often catch myself allowing others to dictate my mood, expecting me to be happy and funny all the time. I often find myself smiling when I want to be screaming, kicking and yelling at how sad/upset I am.

The issue that we run into when we build up these dams to hold our flooding of feelings back is that we eventually break. And its messy. And overwhelming. And hurts yourself and possibly those around you. You find others surprised that you actually have these moments. So then you go back to old habits and dam everything up again because it’s not what others expect of you. And this time, if the dam gets too tall and too much is behind it, then you walk the plank to depression.

It is hard. Life is like the ebb and flow of the tide. Sometimes the tide is high and you can swim and be free and enjoy. And sometimes it is low and you are just trying not to crash too much into the rocks.

But we are human. And we feel every emotion that everyone else does. And we are allowed to feel them. Whatever started this thought that we have to be a brick wall all the time sets us up for failure for ourselves. And when we aren’t taking care of ourselves we can’t truly take care of those around us we love.

So do me a favor. Have a good cry now and then. Have someone you can vent to. And please allow yourself the right to every emotion that everyone else gets to experience. Life, in every aspect, good or bad, deserves to be lived and not hidden. It is better for you and those around you

Let me begin to explain…

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There are two words we use in the healthcare field and thanks to Webster’s Dictionary I’ll define them

sym·pa·thy noun \ˈsim-pə-thē\
: the feeling that you care about and are sorry about someone else’s trouble, grief, misfortune, etc. : a sympathetic feeling
: a feeling of support for something
: a state in which different people share the same interests, opinions, goals, etc.
>Let me clarify that we DON’T want your sympathy

em·pa·thy noun \ˈem-pə-thē\
: the feeling that you understand and share another person’s experiences and emotions : the ability to share someone else’s feelings
>What we DON’T expect many people to actually have

I’ve been struggling with the fact that most people DON’T understand. I can talk until I’m blue in the face, relive moments in my life where I’ve struggled with Jacoby’s diagnosis and treatments or talk openly about my fears and I think that maybe, through words, through my laying out of all the emotions, you may have an idea, an inkling of what it’s like.

But I don’t expect much anymore.

Many many special needs moms I talk to tell the same story. We don’t get asked out too much because people assume we won’t go because we “have our hands full”. We get described as ‘quirky’ or ‘different’ because of our behavior with our kids or even with other adults and their kids. We are seen as paranoid or over react to the ‘little things’ and it tends to drive others nuts.

So take a few minutes to read a little further and maybe step inside the mind of my special needs momma mind.

I was 20 years old when we were told Jacoby had Spina Bifida. February 7th 2007. Our appt was at 11 am and it was running late. Dr. S had to go out on a delivery but I was detetrmined to stay to find out the gender. We had a dinner planned with our parents to reveal the gender and we had people waiting to find out. We went into the ultrasound room and the tech started as normal. Now that I’ve had 2 babies since I can point to the moment when she saw something that wasn’t right. Usually they whip right through the sizes for the head and get the measurements to average out the size. But she kept going back and again and again on the head. Then she kept taking pictures after pictures after pictures. Then she paged the Dr. and we had to ask for her to tell us the gender. She showed us and said “It’s a boy! Now the Dr is going to come in.” We should have known then that it wasn’t normal because after all my previous ultrasounds we went back to the room. We had a later miscarriage prior to Jacoby so we did the 8 week, 10 week and 12 week ultrasounds to ensure the baby was still going strong.

Dr. S walked in and said “we suspect something is wrong with your baby so I’m going to take a look”. She began to slowly scan me and stopped on his head. “His head is very enlarged and this area right here shows there is a lot of fluid on his brain” She then broke that down to explaining what hydrocephalus was and what it meant for the development of the brain, and how it was already causing abnormalities.

She moved down to the spine and said this area right here is what is more than likely causing his hydrocephalus and started to show us the cyst area on his spine. His spinal cord was outside of his back in a little sac of thin skin. “I’m going to send you to Creighton to see my friend Dr. B and he will confirm and go over options.”

“What do you mean options?” and then we got the truth. “So what is worst case scenario?”

“Your baby could die”

I cried all the way home. It had just snowed and haunted by these decisions and whats before us, I remember thinking about what would be the best thing for us, for the baby and told Josh that we should just crash the car and escape everything.

We still went to dinner and as the parents opened up the boxes of Thank Heaven for Little Boy bibs, Josh took my hand and said “theres something we need to tell you”. I cried the whole time and saw the mother’s fall silent. One supported any decision we chose to make, one of the dads said it was probably a dirty screen and we shouldn’t worry. I hated everyone that night. I cried all the way home and chose not to go to work or school or leave my bed for the next day.
People stopped over and would sit with me and I’d cry and cry then they’d start crying and it would make me so mad. How did they even know what this felt like?! How could they be crying?! I called the Dr’s office daily crying as we waited for our appt with Dr. B that following Monday. Hindsight is 20/20 and why I called and cried I have no idea. I think probably because I had no where else to go. Sally was Dr. S nurse at that time and she called me back and talked to me until I calmed down. She has since moved to Children’s from the office and when I see her I always hug her. Shes fantastic.

Dr. B was great. He came in and said “Congrats on your baby boy. Always good to start the family off with a boy”. He started the scan and handed me tissues then began once again going over everything. Myelomeningocele. Spina Bfida. Hydrocephalus. Clubbed feet. Brain abnormalities. Lower defect but bigger than normal. Then we talked options. Josh and I had decided without much thought that abortion was not an option. After my miscarriage I was a mess and had told myself even with a sick baby, at least I was having a baby. He said we could do this. Dr. B sat with us and said he would set us up with his friend from med school Dr. P but that this wasn’t the worst thing and that this was still a baby that would need love, diapers, holding, food, just like any other baby.

We drove home from that appt and took turns crying as we thought that maybe just maybe he would tell us other news from Dr. S. We took turns mourning the loss of the child we had dreamed about, the child we had talked about playing basketball and being tall and handsome like his dad who would play peewee football and ride dirtbikes and be trouble like his dad. We cried for the fear we had for this child. We picked the name Jacoby because it was unique and strong and now when we said it we worried for him. Is he in pain? Will he live? Will he be able to breathe on his own? We cried until we fell asleep and couldn’t cry anymore.

I dropped out of school to work to save money as Josh finished school. We knew we needed to be prepared so we met with the NICU team and toured Children’s, we met with Dr. P, who had a special kiddo of his own and supported our choice and promised to do everything possible for us.

I started preterm labor at 24 weeks and after a long birthday weekend for Josh’s 21st birthday I was resting on Monday May 28th, Memorial day thinking I just didn’t feel right. I called the office who encouraged me to check in the hospital to get fluids and a baby check. We arrived at the hospital at 330 pm and Jacoby was delivered by emergency c-section at 5:54pm. 5lbs 11 oz he came out bluer than blue but gave me a good cry after a little suction and stimulation. Josh followed him to the NICU as I laid there trying not to cry.

Our NICU stay runs together as we often hear other parents say. Hospital time is often different than real life time. Jacoby was baptized before his closure (putting the spinal cord back inside the back) and we got to hold him at 2 days of life. The nurses were great with us but spent extra time with us going over everything. When we went home and left him there I cried and cried. I called every morning at 2 am to check in and was at the hospital by 5 am thanks to my mom’s early work sched. Drs filtered through and told us we would have to take it as it came and they couldn’t give us any specifics on how he would develop. It was exhausting and so much to learn. The cathing, the signs of infections, his back care, signs of his hydrocephalus worsening, signs of failure to thrive and much more. Heather, our last nurse told us she knew we would do great and that a lot of the nurses were proud of us.

We left with Jacoby towards home and onto a new journey.

I’m spent for the night but will continue the soon

The Miracle of People

Everyday we are just bombarded with bad news of bad people, bad events, bad upsetting tear jerking heart breaking news. 

Recently Fremont was hit with the loss of three young lives while the 4th is recovering day by day not only from physical wounds but also emotional as well. 

 

Some days it is just an overwhelming turn off the tv and radio kind of day.Image 

Then there are moments like these. Moments where the World for 3 seconds seems right. Where Hope soars, I choke back tears of joy, and the worries fade away. Moments when the best of people break through the sadness in the World.

Every person in your life has a moment, good or bad, that you grow from. Yes, you may not want to admit it.Just like I hold grudges, like towards my 5th grade teacher and think it was a horrible year for me, but yet again I grew from it.

I get the privilege to work in a field where everyday I see compassion. I am surrounded by fellow employees who work in a field where we give and give and give. It’s our passion and we get fulfilled from it. We walk away everyday knowing that even if it was giving a flu shot, we helped someone.

There is a miracle in people you just have to look for it.

We will go places and get stares at Jacoby, the wonders of what happened to him or what we did to him. Or the favorite We live off the State comments. But then we get the people who tell Jacoby “cool wheels” (He has light up wheels on the front of his wheelchair) or people who stop us an tell us how awesome it is that he wheels himself or how cute he is (yes he is really really cute).

Jacoby dealt with bullies this year, even at one point stooping to their level (trust me it happened once and lesson was learned). After an email about open practice for Team USA, Mike Kult, the coach of the Omaha Red Dawgs, a National Championship Wheelchair Basketball team,and a wheelchair sports champ himself, allowed us to come watch Team USA practice. It was an awe inspiring miraculous amazing heart lifting doubt breaking thing to see. But even more so, the fears, doubts, the case of the I Can’t that Jacoby had seemed to pick up this year melted away as he got more comfortable there. These men broke through every barrier they had in front of them and were everything I wanted my son to see and be. Even more they opened up to him, giving him high fives, talking to him, racing him and allowing him to win. The World was at peace during this time. DSCN5470

I often get overwhelmed with emotions but you just have to stop and look around. Think. Breathe. It’s easy to just see the black in the white. But its better to focus on the white.

I think of the friends that I’d had and used to be close to. The friends I’d never thought I’d not talk to everyday but how we are now walking different paths and are merely acquaintances. I think about how sad it is, but how they were there when I needed them at the time and the support through some rough moments. I can dwell of the changes on the growth apart but I choose the memories of the laughing, the apartment parties, the birthdays together and the fact that we are all ok.

I think of my friends now. How they have watched me grow so much this last year, graduate college, love my kids and are ever present support for me as I navigate everyday life. They are the white in this World.

I think of my Special Mom friends, who notice when I drop off for a week or two and text me to say they know I must be struggling with J’s therapies or tests or Dr Appts. and want to let me know they are there for me and the ever present never spoken ‘I Understand”.

I think of my family in which they have watched us fall and rise and struggle, knowing they’d do it all for us but knowing we needed to do it on our own. The family that pray for us every night without fail and the family that if I asked for anything, would drop it and do it.

There is this thing called Compassion. It is the greatest gift we can give to each other. It is the Miracle in people.

So I challenge you my friends, to look for this in every day life. In anyone you come across. Stop and look around for the good stories, the people who are raising money for others, or helping someone across the road or with a flat tire. Even in this overwhelmingly dark sad news focused World, there are people who can be the white to the black. Also, look at yourself and ask if you are the white or the black. And try to be the white in someone’s day. DSCN5553

Dear Apple CEO Tim Cook

Now in the whole big idea of this blog, lets be real. Does Tim Cook really browse blogs daily and listen to the little people? I mean he has a multi-billion probably trillion dollar company to run as well as staying ahead of the fast pace changing world of technology so highly doubtful.But here it goes

Dear Tim Cook,

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That cute little boy is Jacoby. He is an onry smart funny 5 year old (6 this month) who is the strongest kid you may ever(or never) know. He likes knock knock jokes, silly noises, playing outside, fishing, and hugs. And once again he is cute (just look at those eyes).

Jacoby started kindergarten this year and it was a huge moment for him and us. He was included in his classroom (yay Fremont for inclusion) and he loves learning, coloring, reading, and has even moved to level F in rocket math (kind of a big deal).

Jacoby has Spina Bifida and living in a smaller town he is one of the few in a wheelchair and the only one in his class in a wheelchair. It makes him stand out so when he could stay in the classroom it was great for him to feel a part of the ‘normal’ class. Jacoby also has corticol vision impairment so it means his vision center in his brain did not form appropriately and he has a hard time seeing.

I am not one of those people asking for hand outs or freebies. I am not going into my sob story because there is not much sob involved. Jacoby is amazing and doing so well!

But I do want to proposition you about maybe a next venture in your company that would be a huge hit. I mean huge. Especially in the special needs community.

We can not get an Ipad because of the magnet in them that holds the cases together. Our neurosurgeon greatly advises against it because Jacoby has a shunt that the strength of the magnet you put in them can adjust his shunt, which has adverse effects including seizures or death if the shunt adjustment is not caught soon enough. So yes, it sucks.

Jacoby loves being a part of his classroom but in some classes that use the Ipads for educational purposes, he is excluded because of his shunt. It is not worth the risk to him. So for this boy who is dying to fit in and already stands out because of his wheelchair, has to not be involved in what would be such a fun thing for him to participate in. Plus Ipad would be awesome for his vision since he can make writing and images bigger to see better.

Many of my friends are in the same boat. And many kids with shunts don’t have Spina Bifida, just hydrocephalus.

So here is my proposal. I know many special needs moms with kids from all different special needs areas including the physical and mental special needs talk about Ipads and all the opportunities it could provide for their kids. I think you should bring back the original Ipad. The ones without the magnets so that fearing mommas like me can buy it and send it to school for Jacoby to be included. I think you should bring them back and target them for Special Needs families. I know we could get old ones but I’ve been on a list for a year now waiting for one and none are to be found.

Or just make a new Special needs kid friendly version without the magnet. Maybe with better area to grip or cases with side handles so those with poor fine motor skills can hold better. And of course sturdier because kids like Jacoby get excited and shake and tremor and if it drops, oh boy I can only imagine the damage.

I think part of a great company is compassion. I know it is there because your company has done and donated so much already. Like I said this is a business proposal. With increased rates of special need kids as well as inclusion in schools, maybe this is your next step , which would not only be awesome but make you very popular with the public.

I hope you have a good weekend and maybe take like 30 seconds to think about it or more. It really is a good idea.

Sincerely,

Shonda Knop

UPDATE: Since this post, we, with the help of an Apple rep, were able to find a generation 1 Ipad for Jacoby to use in school this year (1st grade). Unfortunately the school has gone to Ipads for many learning classes and the newer technology does not allow for Jacoby’s Ipad to keep up or run some programs. Look for a change.org petition coming soon!

A Little Lot of Mom Guilt (Part 3 and Done!)

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My name is Shonda and yes, I still have mom guilt. This time it is semi-society imposed mom guilt, but still, mom guilt.

As Josh and Jacoby left the operating room for the NICU after my emergency c-section in hopes for a stable baby to have surgery, I asked Dr. S to tie my tubes. Begged, pleaded more or less. Dr. S told me in a calm voice that there was no way she was going to fulfill this wish because I was young, scared, and may change my mind in a few years (also there happens to be some paperwork needed that I didn’t know about). At that moment, all I could see was this sick baby who would need every moment of my time.

We survived the first year of Jacoby’s surgeries, therapies, hospitalizations, and joyous moments when he did things we didn’t think he could and hope when he couldn’t do things we hoped he may be able to do. Mom guilt.

I started nursing school shortly after his first birthday, spreading my time between classes, studying, his appointments and Josh’s work. I felt content and the thought of having another child was never brought up

Then Jacoby turned 2. I had heard that when your baby turns 2 you get this crazy instinct to have another. Josh was pro baby and I was not quite on board. When you have a special needs child, it is just assumed that you won’t have another kid. We were never told “wait for the next one”. We were always asked “would you want another?”. Josh and I hashed out the idea of another child but seeing Jacoby around other kids and how social he was, plus the fear of him being alone (plus he was so dang cute) helped push me onto the same page as Josh.

Soon I was pregnant with Kenley and there was no turning back. I went over in my head the many thousands of things that could go wrong and how I may be taking too much away from Jacoby. But every moment of worry was covered by Jacoby’s excitement for a little sister. He called it from the beginning and told strangers in stores or walking by that he was going to be the best big brother and that his mom was having a baby.

Strangers on the other hand would ask if this baby was “like him” or if “everything looked ok”. So by like him you mean a miracle and blessing or special needs and different? I got asked if I would “get rid of it’ if it was sick like him. My responses became anger laced as the pregnancy went on and people were told to mind their own business.

Jacoby was so happy and it made it easier. He would talk to my tummy and touch it, and tell me he asked God for this baby. My moments of worry grew as the time got closer for the family of 3 to grow. Kenley11 248

Kenley came out loud, making her presence known in true Kenley style and I watched the clock until Jacoby arrived. My worries washed away (and my heart about exploded with love) as he fell in love with her. He wanted to hold her, kiss her and tell her she was beautiful. He let every nurse know he was a big brother and that he loved his sister. And to think I had wasted all those moments crying and worrying. She was a baby and he was 4. My worries escaped them.

We adjusted and found that Kenley fit into our routine well with little tweaks here and there. Jacoby adjusted well considering he had been the only for 4 years. Some moments he’d get upset but we would quickly appease him.

In society today it seems the rule it 2 kids is the magic number. Especially if you have 1 of each gender. Any more means you are rich or live off the state. We were looked at as crazy for the fact that we had another child after having Jacoby. He would be rolling in his wheelchair and I’d be pushing the baby in the cart and the stares followed us.

Then there was God’s plan that took over. Who in their right mind would have a 5 year old, an 8 month old, and be finishing their senior year of nursing school think it would be a good time to have another baby. I was completely and utterly shocked. Like husband calls home and I start crying shocked. Don’t get me wrong, every single baby is a blessing and I knew it was above me, but still. Overwhelming was the least of words I can use. How is this going to work with Jacboby’s schedule and routine? What about Kenley and her much needed time since she was so little?! Mom guilt mom guilt mom guilt. The worries consumed me for the first few months.

Jacoby was thrilled to say the least. He had prayed to God and told Santa he wanted a little brother. He would talk about sharing his toys (I have still yet to see) and playing in the sandbox and how he was lucky to have both a brother and a sister. Kenley was oblivious that her world was about to get rocked. But the thought of these 3 kids growing up together and having each other was a peaceful thought.

Jacoby began to ask the 20 questions about everything and everyone that is common with 5 year olds. He asked about if his brother would be like him but I explained that like how he has brown eyes and Kenley had blue eyes, we all are different because that means God made us each special. He wanted Braxton to be like him. Mom guilt.

“You are going to have your hands full”. “That is a lot on your plate”. “You are a better woman than I am”. Those comments resonated through his pregnancy and the thoughts of how our world would have to change again and how we would survive while meeting Jacoby and Kenley’s needs ran through my mind constantly. Mom guilt mom guilt mom guilt. As I finished up nursing school and prepared for Braxton’s arrival I carried the worries with me.

Braxton made an easy entrance into this world with a cry and then wide eyed looking at me. I cried when I saw him and while we waited for Kenley and Jacoby to meet him I was overwhelmed with what may happen. Is Kenley going to be scared or understand? Is Jacoby going to realize there are 2 babies now? PicMonkey Collage3

Jacoby loved him and Kenley poked him and smiled. I knew that if they were ok, I was ok.

So we have survived. It hasn’t been easy. There were adjustments and sleepless nights. Double rocking of the babies and special one on one Jacoby lunches. It has been 6 months and we all are alive,growing and happy. Mom guilt turned out to be worries that I was the only one seeing.

Mom guilt is real. And everywhere. But here is my advice. Everyone makes mistakes. Every family is different. But when in doubt, when overwhelmed with mom guilt, look at your kids. Look at their faces and their smiles and know that even though you feel it and you question your choices, as long as your kids are happy, healthy and laughing, you’re doing good.

A Little Lot of Mom Guilt (Part 2)

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So as most people know I am pretty open and happy go lucky about things so this part was a little more difficult to put into words. So here it goes.

My name is Shonda and I have Mom Guilt.

Not in the regular forgot the juice box in the lunch box guilt. I have the wish I could make things easier or take it all away guilt.

Jacoby (pictured above) is of God’s design. He is a spunky tenderhearted silly onrey smart friendly loud independent snuggly 5 year old who likes cars, monster trucks, wrestling and singing. He just happens to be all these things in a wheelchair.

We found out at 20 weeks that Jacoby was going to have Spina Bifida and also hydrocephalus. His spinal cord was outside his back and his head was already off the chart in size. His brain was showing growth abnormalities and what the end result was going to be was unknown until birth.

Mom guilt for a mom of a special needs child is somewhat hard to put into words. But it starts the moment you find out. There is a grieving process for this child you were going to have then the grieving process for the child you are having because you could not protect them like a mom should.

Mom guilt happened when we couldn’t afford to go to have in utero surgery to repair his spine and better the outcome. In 2007 it was still new and we were 20 year olds working part time going to school full time living on love and minimum wages and tips.

I have the MTHFR genetic mutation that isn’t the known clotting disorder, but one that may have been a huge factor in his birth defect (I hate the word defect. Maybe birth uniqueness is better). And although there had to be other genetic factors from Josh to add to the changes in Jacoby, it is easy to point the finger at me and say it is all my fault.

Mom guilt happened when I was told that every day he was in there was good and bad. Good because he was able to still develop but bad because his exposed spinal cord was getting more damage.

Mom guilt happened when my body could not keep him in until term and this already weak and odds against him baby came out at 35 weeks and lung issues were a concern.

As a mom, the moment you find out you are pregnant your whole world changes. You may change your diet, how you sleep, the temperature of our shower or even just body awareness because you want to protect this child inside of you. And when something happens out of your control and this baby is sick already, there is a feeling of failure as a mom.

Fast forward to the present. Jacoby is a functioning 5 year old who attends kindergarten. He has over 11 diagnoses, 12 doctors, a daily regimen of medications and weekly of therapies. He is Mr. Independent as much as possible and is doing great with his schoolwork. His teacher said he doesn’t even need summer school because he is toward the top of the class for reading, math, word memorization, and counting. Way to go buddy!

Then why, daily, do I walk around with a twinge of Mom guilt?

It is easy to say I would give up my legs in a heart beat for him so that he could feel the grass tickle his toes and run and leap like his friends. But I can’t and I feel guilty.

I cry for him some moments when I’m alone because I see the obstacles he has now but also foresee the obstacles he will face. Talk of first grade scares me because the standards are raised dramatically, and Jacoby is legally blind and has attention issues. How can I prep him? How can I help him not struggle? Or the issue of bullies, or trying to fit in or if he will ever live on his own or get a pressure ulcer. Sooo many thoughts run constantly through my mind.

People say “Everyone had issues in their lives and life isn’t easy”. Ok I hear you, but take the normal issues then pile on top of them the medical issues, the adaptation issues, and the money issues ect. Mom guilt.

Jacoby is 5 and has to take a lot of medications daily. And sometimes he just doesn’t want to. These moments result in yelling, time outs, missing a show because it is his job to take these medications. But secretly during these battles I want to throw the pills in the trash, hug him and say I agree that taking medications suck! Mom guilt.

Or when he is tired after therapy and wants to skip homework and yet I make him do it even though I can see how tired he is. He misses so many days the way it is I don’t want to have him fall behind in school. Mom guilt.

I watch the struggles and I just want to jump in an fix it all. I want to put everyone in a wheelchair so he is not different, I want to be able to protect him from the stares, the harsh words, the pains he has, the surgeries up ahead. But I can’t. And some days the thought of not being able to fix things, change things, or make things better is overwhelming. Emotionally exhausting. And heart breaking.

Jacoby is a blessing. He has shown me my faith in many ways and keeps me believing in the possibilities of the future for him. He is a spunky tenderhearted silly onrey smart friendly loud independent snuggly 5 year old who likes cars, monster trucks, wrestling and singing. He just happens to be all these things in a wheelchair.

But there is always a twinge of Mom guilt.