Help

This post is dedicated to my good friend and fellow awesome Mom Amber, who is always teaching me a lesson and there for me as we navigate the ups and downs of life. 1003153_628040925914_156753935_n

Soooo I’m going to swallow this little thing I have called pride for awhile.

I have this habit of declining help. Everywhere we go. No matter who we are with. No matter how many screaming kids I have. No matter how full my arms are. If you offer to open the door for me I’m that person that says “oh I’ve got it Thanks I’m used to it”. And actually I need to be saying “Oh thank you soo much That’d be great”.

But I don’t. I’m hell bent on being independent and making sure that no one feels bad for me or thinks that I can’t do it. Seriously it ticks me off when people say “you have your hands full!”. No one knows how full my hands are or how I handle things so I hate that people just judge or assume.

But then I spend a day with Amber and she is the yingHelp to my yang sometimes. When I’m hardcore independent no help don’t ask, she quickly taught me the other side of things.

I believe she said after I turned her help down with the 3 kids “people don’t ask to help if they don’t want to, and I wouldn’t offer if I didn’t want to help”. We were on our way to a fire safety camp with the kids and I was going to carry Braxton, and push a stroller with the crabby toddler and the wheelchair by myself. She smartly informed me “You honestly need to let people help you if you need it” then told me of her recent trip to Target with her screaming child and how someone had offered her help and she turned it down, rethinking it afterward.

Yes Amber, you were right. Not everyone has a second agenda or judgement when they offer help. Some people just want to help. And I go out of my way to not take it, which probably makes them feels bad, while making me look stupid as I get whacked on the head with a door as I try to push a wheelchair and hold 2 kids as I go through (I think that is called Karma).

So here it goes. For the rest of August I’m not going to turn down help. Not with doors, or carrying trays, or even with cart pushing/kid chasing. If I could use it I’ll take it. And to make it even more fun, I’m going to carry my camera with me (or try to) so that I can hopefully get a picture of these awesome people and post them on my follow up blog from this.

Now this is hard for me, so I could use some prayers.

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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.

A Little Lot of Mom Guilt (Part 1)

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Hi. My name is Shonda and I have Mom Guilt.

See Braxton? His face says it all. I subjected him to a cold room with a bow tie. Did I feel guilty about that? Nope. But see his nice tan going on? He had breastfeeding jaundice. And everyday he was even the slightest orange I felt guilty.

As moms we are bombarded everyday with ideas of how we should parent or not parent. Whether it’s telling us what we should feed our kids, dress them in, how we should discipline them, what activities they should do, where they should live, how much tv to watch ect ect ect.

And I have a bad case of mommy guilt.

Last week Jacoby used shall we say, colorful words at school. He has a tendency to give into peer pressure, even without the pressure. Some boys told him it would be funny so he jumped right in. So when the Principal was on the other line I was ashamed. I’ve cursed in front of my kids. Not much but still have. Mom guilt.

Yesterday I was breastfeeding Braxton and Kenley fell on the carpet while running. The girl has no grace. At all. And I was tied down feeding Braxton that I couldn’t run over and give her a big hug right away. She climbed on the couch next to me and snuggled but still. Mom guilt.

Then there are the moments when all 3 need something at the same time. Or I’ve had a crazy day and dinner is late, bath time is late,and they all want my attention and I just need to pee! So I give into microwaved chicken nuggets, quick bath and peeing with the door open. Mom guilt.

Then there’s the long hours I work as a nurse, the fact that I have 3 kids instead of only 2 and so on and so forth. I could go on and on and on with what all I’ve heard and been told.

Mommy guilt is real and everyday there are little specks in my life that I think ‘I could’ve done that different’ or ‘wish I could have a redo” or the ‘guess I’ll start saving for their therapy now’ thoughts.

Let’s face it. Parenting is not easy. There are no manuals for parenting, just thoughts, opinions and ideas out there. It is trial and error. Some things are black and white, such as don’t give your kids meth. And some things are different colors such like a grey or a red, like lying about where babies come from (the technical version not the gift from God version).

So here’s my take. Do what is best for you. Do what makes your child laugh and healthy and growing and happy. Do what is right for YOUR family. And only you know what is right for your family (except meth. Meth is never right).

Please don’t beat yourself up. We are, believe it or not, allowed to have bad days. We are allowed to pee with the door closed, get take out some nights, put the kids to bed 10 minutes early for quiet time, and buy some new undies(I’ve been working on the thought that it is ok to spend money on myself).No one walks the parents walk without mistakes, but the love you give and lessons learned make up for the momentary loss of memory when packing a lunch and forgetting a juice box, or whatever else you did or didn’t do.

So as Braxton’s sad baby face says good night (or take this tie off of me!) be thankful for your blessings and give yourself a pat on the back or chocolate. You’re doing a great job~

Give Thanks and Be Thankful

Easier said then done.

I many days feel frazzled and like our life is a ball of chaos waiting to explode. Often at night I like to sit on the couch with mindless tv playing in the background, with Josh beside me and say and do nothing. The chance to not use my mind or have someone clinging to me or having to do something for someone else can be such a break for me.

How selfish am I?

I had made a commitment to blog to my counselor to help relieve the stress while I was in nursing school as a way to out my stress and be a break from the stress that was school. I used to love to write. Loved it. But looking here now the ball was dropped. Because I didn’t want to make time.

Jacoby once again got in trouble for talking at school. I was mad. Again Jacoby?! Again?! How many times do I have to tell you to do your work and not talk. You control yourself and your mouth and need to stop talking during work time at school.

How selfish am I?

Frankly the way of life now is to keep moving. Keep doing. Keep up with life. Which also always keeps moving. As I found out the news this weekend that one of my favorite Super Moms Kate, whom I’ve followed since 2010, had to say goodbye to her 5-year-old Gavin as he gained his wings this weekend, I wept for her, for her other son Brian, and for the fear it invoked in me in regards to Jacoby. And it made me pause.

Here I was Friday and Saturday giving extra kisses and snuggles to my kids, thinking about how great they are and by Monday I’m yelling at Jacoby for getting in trouble and then scolding Kenley for the fact that she has figured out to scream. Nonstop.

Then the bombing. People were in the process of meeting their lifelong goals of finishing the Boston Marathon. An 8-year-old died waiting for his Dad to cross the finish line for the first time.

How selfish am I?

I find myself today thinking of my life and how really really selfish I am. Really. Today as I reminded Jacoby to hold his tongue at school and not get in trouble, I needed to reflect on the fact that he can talk. At one point they thought he may need a trach or never talk. And he talks. A lot. It’s human nature to get annoyed but I also know there are several moms who dream of hearing their children talk. Even if its to say fart and then laugh.

As I was at the gym I was complaining on how much work I have to do for weight loss due to the baby weight I’ve gained (for those of you catching up, yes we added another! Surprise!). Instead I need to say THANK GOD I could carry my blessing and carried them far enough to gain weight.

And as I look at my dishes and house and think about all I need to get done before the new carpet and bathroom tile and then putting it up on the market, at least I have all this and the opportunity to move.

Yes, I’m sure this will be a little too short-lived. I will probably get caught up with working nights, the 3 kids, therapies and life.I’m human. But maybe I take things for granted too much. Maybe I just assume my kids will be there when I get home. That the little kiss I give them wont be my last.

Fact it Tomorrow isn’t promised. Jacoby could have a seizure like Gavin and gain his wings. I could get hit by a car on the way home from work tomorrow and never hold my kids again. Josh could get killed riding his dirt bike. Tomorrow is not a promise. But that makes today an opportunity.

An opportunity to kiss those you love a little longer. To hug tighter. To think about how lucky you are to have dishes to wash. To be thankful your feet hurt because that means you have feet that work.

So I know I’ve said a few extra prayers to God to not only thank him, but ask him for forgiveness for my selfishness. To help me see more around me. To help me  be satisfied.

So tonight as I get ready for work and Kenley is throwing her tantrum and Braxton is hungry while Jacoby is making sure I know he knows my name (Mom! Mom! Mom! Mom!) I will breathe, smile and just be glad for this ball of chaos.

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