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To the lady sitting next to me at the pool…

For the most part I  always try to keep my opinion to myself. I mean everyone has one and its great to have your opinion, but… there is also a time and a place to voice your opinion.   You know those people who are always throwing theirs around and it has to always be right, we all know those people.  last week Brookie and I are at the pool and I was minding my own business laying in the  zero entry, watching my daughter enjoy the sun. WE NEVER JUST HER AND I GET TO GO. SO IT WAS NICE. these 2 lovely ladies are sitting next to me.  No big deal, until I hear this one mom, started complaining about life.  I get it, I do. Until she started complaining about how she couldn’t believe she had scheduled her kids swim lessons for 9:30 am, which was right in the middle of her yoga class, that she refused to miss. then she proceeded to say how she hated summer and how her kids were out of school for as long as they are, she actually said it is ridiculous how long summer is, and it cuts into her free time. As I sat there and listened to her, I couldn’t  help but feel sorry for her. I was thinking to myself, I am pretty sure she chose to have children, why have them if this is how you feel. think about how her children would feel if they heard her talking like that. It made me sad, but then it also made me angry.  I had to remove myself from her surroundings, but not before I kindly walked our and said.  I hate to interrupt your  poor me sob story, but maybe you should be thankful for what you have, your family, your heath, Because someone I know is burying their son this week and would give anything to take him to swim lesson, I then said she would gladly miss a yoga class to spend one more day with her son. I got brookie we got in the car and I cried the whole way home. I was so angry at her, at people, at life. Why are people so selfish??  Do people really think we picked this for our kids, don’t you think in one second we would take all of the fear, hurt, pain, anxiety, the unknown away from our kids. This is what most people don’t understand.  I promise you, you will never hear me complain, about anything.  Well maybe I may complain a smidge to my hubby, but about having to go to the store, things like that.  Not about how my kids made me miss my yoga class, BELIEVE ME I would Love to go to a yoga class, but I can’t right now and that’s ok. As I sit here watching my 5 year old in the hospital as he sleeps, I try to remember I can’t let people like that get to me. If people only knew what its like, NEVER in a million years did we plan for this. never did I think my other kids would live the life of having a sick sibling, who plans for that, how do you prepare for that? you don’t, you just take one day at a time, NEVER did i think we would divide and conquer in ways that include many many hospital stays and our family and friends jumping in to help with everything.  NEVER did I think I would attend more kids funerals then adults. NEVER did I think I would have to explain death in such a way that my 14 year old can sleep knowing Bo will be with us in the morning. Can you imagine, can you even wrap your brain around that, about how My kids feel. People tend to get caught up in their own lives and forget to ask how are Leksi, JOhnny and Brooklynn doing.  NEVER can you prepare yourself for that, NEVER can I assure my Daughter Bo is going to go to high school. Its heart wrenching and its NOT fair. So… before you sit anywhere in this world and complain about the children you chose to create and vowed to take care and care for and teach, that trust you. Please think about how much worse it could be. I can promise you that lady would appreciate her life so much if she spent one day with us, with BO, She would see how my kids appreciate the little things in life, how they take in all of our little life things that we get to accomplish as a family, a Royals game that all 6 of us get to attend.  WE have NEVER been to a movie all 6 of us as a family. Those are the things people don’t understand! SO please hug your kids and try to complain less about everything!!

 

c

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Is it this or is it that?

for almost 8 weeks, I have had the what is wrong with me moment at least 3,456 times.  Why am I unable to get up and do what I need, why am I unable to get things done, why am I unable to feel happy, why am I unable to feel relief!?! I keep asking myself these questions daily?! What is wrong?  Am I depressed, I am tired, what in the hell is it!? I feel like I am making excuses for myself more then I should be. I feel like life is going forward and ours is at a stand still?! It’s those kind of days that I just can’t wrap my brain around things, around life?  I have to tell you its the worst feeling In the world, the unknown  the what if’s,the maybe this will work, the things will be better tomorrow. Will they? The past 8 weeks I have started to realize so much about people and life.   I have lived the hospital life for 5 years!! 5, every single time Bo is there I am there. Please don’t tell me how amazing I am, it is my job, I chose to have children. I wanted children so it’s my job as a mom to stand by my son! I hope most everyone would do the same?!? Your wrong, some people don’t! Some people wish they had “sick” kids some people want everyone to think there child is really sick, I promise you I have seen it, I have lived it. Why the hell would any parent want to have to do what john and I do, day in and day out, why?! I have to believe that the fight we are fighting is such an amazing one, we will never give up we will not stop, I don’t care if we have to travel to the ends of the earth. No please don’t say good job, say that’s  right, that’s what I should be doing as Bo’s mommy! That’s what I would hope most every parent would do!?! Again the past few months I have had to remind myself, I can only control myself, my family. I have to remember if tomorrow when I get up if what I was supposed to do like go workout or go to the store, if doesn’t work because my son only slept 2 hours, and his blood sugar was 567 then Dropped too 67 and I had to watch him breath all night, well that’s ok I can workout the next day! I have to remember its ok, stop being so hard on myself and I can’t let the stupidity of others get me down! I know what goes around comes around and shame on those who aren’t doing what they are supposed to  be doing! As long as I know I am doing what I am supposed to be! I have to believe that I am doing the best I can, for all of my kids and my Husband! I refuse to let the ignorance of others ruin my day. I can’t control it, I can’t let it control me, I have to believe what goes around  comes around! I have too!!

C

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Life

There have been a ton of things going on for our little man lately…many fundraisers and amazing people in our life taking the time out of their life and away from their own families.

In January our good friend from high school, Derek McQuinn, professional wrestler and owner of  Team Fitness, approached me about a wrestling fundraiser he wanted to put together. It was so much fun and Bo was able to attend the last part of it.  Seeing him in the ring during the main event was truly priceless. There wasn’t a dry eye in the house. I can’t thank him enough for his time and effort on the event. He handled everything. It was amazing, he is amazing and we thank him from the bottom of our hearts.

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Currently, our life long friend Rodney, who is a big time hunter is doing an online Redneck Raffle for some amazing prizes. He is busting his butt to get the word out about Bo. He is unbelievable. It’s amazing to me, our support system. I always worry people will get tired of hearing about Bo, about his day to day struggle.  His day to day struggle is real, so real I know people have a hard time understanding our struggles.

Here is an example. Last week for Valentines day, Brookie and I were making stuff for her class. Bo wanted to help so, I of course, let him. He asked me if he got to go to Brookie’s party. I had to tell him, “I am so sorry honey but you can’t go.”  He didn’t want to help any more. Friday morning as I was getting Brookie ready he said, “I just want to go to a party.” I was heart broken, for him, for me…then I just got angry. It’s so unfair for him. It just isn’t right for my 5 year old to have to struggle everyday with his health and now he is sad because he can’t go to a party. I hate it.

So here is one of the many reasons we’re doing all of these fundraisers. Obviously theses fundraisers help with our medical expenses, but for over a year now I have been researching a diabetic alert dog, which will benefit Bo in many ways.

He will have a companion, a constant furry friend who is always with him. The dog will go every where Bo goes – to the doctor, the hospital, to get IVIG, to get blood, to the movies. Any and everywhere Bo goes, this dog will go. And it’s not like he really gets to go anywhere, which is why this is so important. He needs a friend!!!

Another benefit is that this dog will be trained to night alert, most diabetics die in there sleep, they get too low and just never wake up, which is why I check his blood sugar at multiple times a night for my peace of mind. This dog will be trained to ring a bell at night that will ring in our room, so if he is low or high the dog will sense that. It really is amazing. It will not change the fact that I will still check him. I have done it for 4 years now and I don’t think my mind could ever actually sleep through the night, simply because it’s all I know. This could be life changing for Bo. He isn’t your typical 5 year old. He misses out on everything and it’s terrible as a parent to have to deal with the heartbreak that comes from that.

That brings us to kindergarten. Brookie will be starting kindergarten in the fall, but Bo will not. As a mom this is one of the hardest things I have ever had to do. For the sake of his health I know I am making the right decision, but socially it sucks. I can’t even explain it to him yet because he won’t understand. I never thought in a million years the day I brought Bo and Brooklynn home, I would ever have to make a decision whether or not one of my twins could attend kindergarten. That’s not how it’s supposed to happen.  IT TRULY BREAKS MY HEART. The Shawnee Mission School District has been great about working with us but it’s still really hard.

I honestly try not to be a downer all the time. I think for the most part I do pretty good, but believe me if everyone knew exactly what our day consisted of you would be exhausted just reading it, let alone living it. Divide and conquer is all we know as a family.

I almost forgot…to all of our amazing friends who brought Bo valentines, ALL of the amazing teachers at Roesland, who’s entire classes made him valentines – thank you so very much. It was truly amazing!!

C

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February 23, 2015 - 9:23 pm

Elaine Miner - When Brooke starts kindergarten, can the district start a FaceTime session so that he can interact with the other kids? It might help if he can at least join in on some of the activitities even if it is on screen. It might not quite be the same but it might help him not feel so isolated while keeping him safe. He could share some friends and meet some of the same kids. You might ask the district if that is available.

January 17 Fundraiser – Super Show for Super Bo

We are so excited about this weekend’s fundraiser that has been planned by fellow Shawnee Mission North alumni and professional wrestler Derek McQuinn.

Join us January, 17 2015 for A Night of Champions – The Super Show for Super Bo. This family friendly event will take place at Impact Fellowship Church, 12011 West 127th Street, Overland Park, Kansas. Doors open at 6pm and the event starts at 7pm. Dangerous Derek will be joined by former WWE Superstar Trevor Murdoch, Stacy O’Brien, Miss Natural, Superstar Steve, Bull Schmitt, The Black Hand Warriors, Marc Godecker, Jack Gamble, Brian Breaker, Leland Race, John Webb, Ice Man and Mike Sydal.

We are blown away by the donations that have come in. The following items will be raffled off:

A training session with NFL quarterback Shaun Hill – join Shaun and Derek in the weight room and on the football field work a workout of a lifetime

Autographed former Kansas City Chief and NFL Hall of Famer Will Shields

Portrait session with our family photographer, Heather Morrow of hocus focus

1 hour massage from Heather Mahlberg at LuluSalon

Gift cards for Tim Crough Fitness, Thai Place, Janelle Shoffner at Salon J and more.

Tickets for the Super Show for Super Bo are available online and at the door (if the event isn’t sold out by Saturday) and we will also be selling our new Super Bo t-shirts at the event. Stay tuned for a sneak peek of the new shirt design this weekend!

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When it rains it pours…

Where do I start?!? 2 weeks ago we got to come home from a 3 week stay at the hospital. What was supposed to be 3 days of prep work for a colonoscopy turned Into not feeling good, going in 5 days early and all hell breaking loose. We changed some of Bo’s meds around since we were going to be staying put for a bit, well with trying to clean him out and this crazy leg pain he has been having everything fell apart. He got a picc line, I never thought I would ever say I was so sad not to have a port, but boy do we miss it. When we first got there he was super dehydrated with blood sugars all over, so it took 6 pokes and Finally the PICU DR coming in and put a line in his foot. The next day we got a PICC line so much easier,Ugh… The day before his colonoscopy he had a very bad seizure, one that scared me half to death and we had to call a rapid response on him, which means the whole hospital comes running. Scary shit! He got a gigantic dose of phenobarbital and was out of it for most of the night, we changed something’s around with his seizure meds and cancelled the colonoscopy, he had another one the next day but was nothing compared to the day before. He has been having some pretty severe leg and ankle, well really joint pain, since rheumatoid Arthritis is a clinical diagnoses we started him on some meds to see if the pain would subside, instead his counts went crazy and he was pancytopenic Which means all,of his counts were dangerously low. His ANC was only 200. It was a very rough 2 weeks, this is kind of how he works, he just falls apart for no reason. So we changed the RH meds and are giving him something different for that, it sucks it really does. Having your 5 year olds little body hurt so bad that he doesn’t want to get up and play, it’s heart breaking! We all had a pow wow about what our plans were, what is next. Well were home with nursing 5 days a week, he gets to go no where. But at least we’re home. I just need him to be home for the holidays for all of our sake. We have moved IVIG to every 2 weeks instead of 3 and we’re hoping we will have some results soon from the long term bone marrow biopsy. Monday Dec 1st he spiked a crazy high fever, we got some labs and his white count was 2, which is really good considering where he was. Today were getting IVIG and checking counts again. One of the hardest parts about this whole thing is yesterday I have to start prepping Bo for this. I have to tell him all day long, remember we’re getting IVIG tomorrow and remember your going to have to get a line, and remember it will only hurt for a few seconds, and remember mommy will be there, and remember it is only for a small period of time. Then all day he says to me mommy, why does it hurt, mommy, why do I have to go, mommy, why do needles hurt, mommy, way is their blood, mommy, why do I have to go to the hospital, mommy, why do I have to wear a mask, mommy, what time is it. Which means when are we going! Ugh, he asked me and everyone else at least 50 times a day what time it is, not sure if it’s because he takes so much medication, I’m not sure if it’s because he is so used to hospital time, I don’t really know. What I do know is in life you don’t realize just how when you have a family you always knew you were going to have to divide and conquer. John and I have to do that. We both don’t get to go to Leksi and Johnny volleyball and basketball games, thank god my father in law is willing to miss them, yesterday,they both played at the same time, thank god Leksi and Johnny are ok with the life we have become so accustomed too. Is it fair absolutely not, is it just the way it has to be yes. We’re so blessed to have such great kids, who just roll with the punches and blows. Please keep us in your thoughts and prayers to get us through these holidays!

C

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December 7, 2014 - 7:15 pm

Tyese Locke - Continuously I will uplift prayers for SuperBo. He’s a warrior for The Lord! I pray for your strength and wholeness Bo. You stay strong for your babies and know God is with you guys!!! Stay blessed and continue to call on The Lord. He is miraculous healer!!! Expect great things!!!

Super Show for Super Bo

We continue to be amazed by the generosity of our friends and family. Fellow Shawnee Mission North alumni and professional wrestler Derek McQuinn has planned an amazing fundraiser for Bo. Join us January, 17 2015 for A Night of Champions – The Super Show for Super Bo.

This family friendly event will take place at Impact Fellowship Church, 12011 West 127th Street, Overland Park, Kansas. Doors open at 6pm and the event starts at 7pm.

Dangerous Derek will be joined by former WWE Superstar Trevor Murdoch, Stacy O’Brien, Miss Natural, Superstar Steve, Bull Schmitt, The Black Hand Warriors, Marc Godecker, Jack Gamble, Brian Breaker, Leland Race, John Webb, Ice Man and Mike Sydal.

Tickets for the Super Show for Super Bo are available online.

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Destination NIH

Today is the day, was the day. We headed out at 6:18 this morning to Maryland, to NIH. We made it 700 miles, which if you know Bo was quite a task. He actually did a really great job considering how far we went. We will get up in the morning and play some catch, chase captain america and eat some breakfast, I will give him a few meds and we will finish our journey, hoping it will only be 4 hours. As I had 12 hours to sit and do. I dress thinking today, I couldn’t help but think about this week what will they say, what is next, are they close, do we have a plan, I have so many things going through my brain. I am not medically educated, but I’m educated now medically because of my child! Does that make sense? I have been writing questions Down and honestly looking back at them, you truly have to know some crazy stuff to come up with questions like mine! Which is where my brain stops,with, are we there, do we have a plan. Thanks for all of the
Racers and well wishes. It truly helps.
Here are a few pics from today!

C

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Pre-K…

Almost 5 years ago when Bo and Brookie were born I wondered what it would be like when they were in pre-k, pre school, any sort of activities before they head to kindergarten. When you have 2 babies that’s what you think about, the outfit I will put them in, will they be in the same class, would it be better if they aren’t?!? All of those questions, the what IF’S, today Brookie started Pre school, 57 days until they turn 5. Today Brookie went to pre school with out her twin brother… It didn’t really hit me until we were getting ready to leave and I was taking her Pic, Bo was sitting on the couch with the nurse and he ran over and said he wanted his pic taken too. Ugh, instantly my heart kind of sank, I felt so sad,sad that I wasn’t going to get a pic of them outside the school together, sad that he can’t attend , sad because he has to stay home with a nurse, sad because he knows no different. Is this the way it’s supposed to be, how I pictured it?!? It’s these days where I can’t help but get a little pissed about things, how much he has been through in his short life, pissed because he is missing out on important things, important to others, but for us it’s how our life is, how Bo is. I had to pick myself up and remember this is what’s best for him, he can not risk the germs. So we played a hell of a lot of cars and I made him the biggest road I could outside!:) we’re heading to NIH October 14, for blood, tests and more stuff. Not really sure of our itinerary but I will let you know when i do.

Here are a few pics from today!

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