Hydrocephalus

This year I was asked to Chair the Hydrocephalus walk for the Phoenix Area. I had no idea what I was doing. I didn't have a committee and only had one other person that I was working with. We didn't really " Work" together. It was more her telling me what I wasn't doing right and her doing stuff that I didn't know about. But in the end we got what we need and we had an amazing event.


Supporting Hydrocephalus has brought me to meet so many moms and other people like us. Most of the people have kiddo's with hydrocephalus weren't born with the condition and have the condition as a secondary to another condition. For us the prematurity and the brain bleeds lead to the diagnosis of the hydrocephalus and the consequences of the hydrocephalus are long reaching. None the less, the feelings of knowing so many kids at one time in Shunt Malfunction makes me kinda nervous. Almost like I can't be friends with them for fear the Shunt Gods will add us to the malfunctioning list!


The handkerchief's that set our diagnosed kids apart were a big part of the reason that we raised money and walked. I am thrilled to have seen such a successful event and to have been on the learning curve to do so.

Hoping that one day, one step at a time, we can find a cure.





A few feet of Shunt tubing was donated from our local shunt manufacturers were donated and I made over 300 shunt pins. I have some more extra tubing and some extra supplies tat I can't wait to cut into. Each ribbon is 1 inch of love that reminds me that we need a cure!



This years walk was a huge success. I can't wait to find a committee that can work with me and we can work to make a major dent in our goal.

Watch out 2016.

More photos to come from our actual walk!!

A Special Kind of Mommy Guilt

10 years ago I was naive. I thought when you got pregnant, you had morning sickness once or twice. Had a gorgeous glow. Tons of energy to finish your semester at school or keep working till you popped. You birth a baby, hang out and be the mom for a few months, then got back on with life. You find sitters to finish school or work or you become a stay at home mom. You go to play groups. You hang out with all the ladies in the ward/area/family/ that have babies the same age. They grow up together and become friends, you become friends with the moms of these picture perfect moms because you spent HOURS at the sports complex with them, and your life lives out happily ever after....  and then those Babies grow up and  they get married, have more babies and the cycle continues-


BUT-  That didn't happen ... twice.

     
Though my pregnancy with Tyler was not text book by any means, ( OK at all!)  it changed everything about my life and how my life would be. There were lingering thoughts that a baseball game or a lacrosse game, but there were also bigger possibilities of wheelchairs and life long limitations and disabilities. There was also a part of me that always thought there would be a miracle and that we would be skipped over and he would be just "Fine." We were all praying, fasting and doing a whole bunch of everything that you thought of that would make him "fine." But that didn't happen either.

The ride of this Mommy guilt was just beginning. 10 years later we are still riding. Not sure we are up right now or just on a coast, but we haven't gotten off the ride yet.

There is a few steps of this mommy guilt that as Special needs moms ( or chronically ill) go through. At first Tyler's life was a fairy tale. We tried to have everything upbeat and that he was doing great and wonderful. The few times it was hard and not ok. But no one wanted to not see a miracle. For every bad, there was this knife turning inside of me. The one that made me rethink everything. Did I do something, did I cause this? What could I have done differently?

Denial. I kept asking our pediatrician if she thought that Tyler had CP. She would use kind terms, like higher than normal leg tone, but no. He didn't have CP.

When we would go into a new specialist or the NICU follow up and something would come up, no one would tell me, no he doesn't. So we just went and worked harder.  I put everything I had into helping him reach milestones. EVERYTHING. I fought so hard those first few years.  I felt so much guilt that I did this to my child.  That I was going to figure out a way to work hard enough that I didn't feel guilty.

Every time that we would get to meeting a milestone I would do the micro analyzing of every single detail. We would count super fast so he was sitting up for longer periods of time. Or he was standing up or he was doing this or that. It was positive, positive, good ALL the TIME.

It wasn't until he was just over 3 and still not walking on his own ( though he was doing more than what we were told he would do) that we were sitting in the neurology office of Dr. Bernes. He came in to a little boy walking around the room holding on by one finger, walking around the office. As he was talking to us, unsure of why we there, he said " You know he has CP right?" I was FLOORED. It was then that I had to face the life long disability rights in the face.

There was the guilt again. What did I do? How could I do it to my child? What could I have done?

Was everything rose? No. Not so much.  Honest? We tried. I truly wanted the miracle. That instead of always getting the bad part of the .1% We would be that .1% that would be a miracle.  We would beat the odds.

The further behind we got brought on the next part of the mommy guilty or what has now moved into the broken mom role.

I would avoid places and people who are pregnant, people who just want a "healthy baby" and people who were just unkind with their words in general.  I couldn't handle it. The baby part was to much for me and I would literally leave any event. Even family events.

Now that the journey is well on its way, I now avoid specific "Types" of special needs moms. I can't handle the constant telling me that because our diagnosis isn't exactly what they have, that we can't be friends. Or that we can't agree to disagree and just put down the judging from every side ( even mine!)

A wise women once said, "Can we lay down the right to COMPARE and try and find something to share... SOMETHING anything" I took that as stop the mom shaming, stop the "you think your kid is sicker than my kid" shaming and just agree to disagree and who can help you find the resources for your child that you hadn't thought about. Maybe a Hydrocephalus mom has a resource for a CP kid or a Autism mom has some ideas for a out of control 3 year old. But you ( or the mom) can't put down the difference to just allow us to SHARE and hold on to SOMETHING that is the same. There is always something that we can use to empathize with each other.

As the ride progress we found something that Tyler was good at. And we ran with it. We accept that something is ok. We accept that something will make it work and he will be ok and we make it ok. Everything from a chair, an iPad, or do we teach him braille or to use a stick. But whatever it is, we push him. He isn't a quitter.

We started to focus on what he did well and stop worrying about making him "mainstream" and "normal" and allowed him to be "extra ordinary" and the super hero kid he is in his own environment.

Dallas and I do grieve. Both of us. But not together. We do it in our own ways and in separate times. Usually when one is strong enough to carry the load, the other is weak and breaking down. It has gone this way for 10 years . We don't have a choice but to o it that way. We have 2 babies to take care of.  We do it that way because we have to. We need each other.

Does Tyler grieve. NO!! He sees himself for what he is, just a Boy. A  Super Hero and powerful person. He draws people to him by just being him. He has an old soul. And he has an incredible tolerance for pain. He has courage, he is brave, he is smart, he is cute and he is VERY VERY kind.

So what does this mean?

As a mom, and on the eve of Mother's Day weekend, we go into the weekend where we are thankful for our own mothers, but also celebrating with our own motherhood, I am celebrating my children. Both of them are miracles in their own right. Tyler, we fought to keep him here with us. And 5 years we fought to have Grayson.  Nothing makes me more proud than to say they are mine. There are downs and there are ups. There are times we coast. The guilt doesn't go away and at this point it probably won't EVER go away, but the drive to be the best we can be, will always be there for all of them!

The fun pictures of life in our house!

Our Valentine Dinner:




This little one is the best when he is sleeping:



Grayson has the best time in our little neighborhood. He needs a fishing pole Grandpa!


We borrowed a baby one day to see if we could convince Grayson that HE  was not a baby. Other than he LOVED the baby that he feed him, put him to sleep and would stand there cooing how cute he was, it backfired.



For some reason I don't even care he is eating out the centers of the oreo's and turning them into pasties... Ok they are really smiley faces but it never got that far...



We can't forget the time we made 4 trips to the pediatricians and each tie a bruise bigger than Texas would show up on someone.....





And we still like Sand.. A lot of it



This sweet thing climbed up on my lap and laid there while I didn't feel well and we watched sponge bob together.... LOVE him so much

It's a sad fact ... but a fact

Tyler is turning 9. This kid LOVES birthday's. When it hit Sept.1st he got all excited that it was his month and that we would be having this awesome party at his favorite places with balloons and party hats etc. I didn't have the heart that it would BREAK my heart to do that to myself this year. But I didn't tell him no.

So, I went to 800 of my closest Facebook peeps and asked them to share a photo. This photo:

You see, Tyler has been invited to one persons birthday party in his whole 9 years. Every party we throw for him we invite his entire special needs class and hire extra respite and state workers to help us with any extra need that we could have. And yet no one shows up. No one even RSVP's. So last year, we rented out a lane at Flip side and waited to see of the 11 kids in his class, who was coming. No one showed up. It was me, his respite, his dad and his brother. I was heartbroken. 

But in true Tyler fashion he said that is ok. We can still have a good time. But I was broken. 

This year we have been trying to figure out what to do and where to have a party, Ty is not satisfied with just something here with Cake and us. He wants to go to the trampoline place, or the bouncy house place or the indoor play place. He wants to invite all his friends. But what mom dares tell him that there is no one that will come. 

As hard as it is, we have but few friends for a kiddo like Tyler. He likes things that a normal 4-6 year old would like. Not what a 8 year old would like. He is socially not where he should be. So how do you tell your innocent kiddo, that it isn't going to happen.

Well I can't. So, please download the photo and share his story. Send them back here to see what he is all about. Lets give him the "Surprise party" he deserves to have! 

The address is incorrect on the flyer. Because of my school deadline I don't have time to fix it, but his address is 18902 e kingbird. 

Summer Camp

This year we made the decision that Tyler needed to go to a summer program. We started looking at them last year and never did it, but given his current need for something to do, and for a schedule and because his abilities ranges from age 2-9. There are SO many things that people don't realize that he can't do. But our new worker is REALLY good at helping us get his goals met.

Summer program for Tyler didn't work for him to go all day but he is going for half the day. It has given us a structure for summer but it leaves time for us to do things together. The full day summer program was a traveling one and he wouldn't really work to do the movies and a few other activities so we didn't do those. But I am glad we opted for the every day program.

He loves it. He loves to go, comes home happy and makes friends. The place he is going is very big in the Autistic community so he is with a lot of autistic kids. But one thing about those kids, they become friends and stick together. Tyler has made a friend with a little boy named Daniel. Apparently they are totally inseparable at camp. He even drew Tyler a picture. Tyler talks about him all the time and Tyler has done really well at the camp. If school doesn't go as great this year as we would like, we might have to take a look at what they have to offer for school options as well.




I have been impressed with his summer camp experience and am pretty sure that next year we will be going back.

Amber and Robin

A long time ago in a far away land I lived and breathed Missionary work. I went on a 18 month mission for the LDS church. The far away, and VERY exotic land was Indiana. Trust me... it was foreign.

Along with Hoosier balls, Hoosier pets, Ball State and Hoosier chilli a little city was nestled up in the north. A place most famous for Touch Down Jesus and the Holy war of Football, Notre Dame, was a city called South Bend. My most favorite place in the entire mission. One day I was sent away. A little more to the east..... GOSHEN!

I was given a new little companion named Amber. She was a shy little gal! She was awkward, and a little unsure of herself. But I loved her. And we soon became friends. Then we became companions and then it was all over from there.

After a long time being apart Amber finally came to Utah and we decided that we were going to meet up and talk and have a great day together. She was going to be bringing her other half( Twin sister) that I hadn't met before and I was going to introduce my amazing other half and half pint.

Amber and Robin brought Ty a HUGE stash of fun stuff. He got a new mickey mouse blanket, a disneyland shirt and a NEW mickey mouse. All direct from Disneyland. They also made me a doll that looks like Tyler did when he was a baby. She even go the weight right.

We talked for a bit then headed off to Thanksgiving point to eat at the Trellis Cafe and enjoy the 2 buck Tuesdays.

We took off into the gardens. They are SOOO pretty.

We took off walking and letting Ty ride in his stroller but he was NOT having it. He took off up the hill with Robin and Amber.

We walked over by the water falls and by that point we figured out why Ty was being so snotty. He had figured out this is where we went to play in the water. He was right. So we started over toward the Noah's ark. They had so many kids there to play they would only let kids in for 20 minutes and you had set times to go in the water. We got there at 2 and his time was 5. We convinced him we could go home and play in the pool at our house.

We LOVED spending time with Amber and Robin. It was such a great experience. It is so amazing to see how much these girls love my boy! They Adore him. He LOVED them. He warmed up to them fast and he has not stopped playing with his animals since.

Thanks for the time spent here Amber and Robin. Next up.. us going to the beach with YOU!

Todd and Amy and Oli

Last week was so fun and so busy! We made plans with Dallas' long time best friend and his cute wife Amy and cute kiddo Oliver. Oliver and Tyler are about six month actual ( but really 3 months) apart. Both of our kiddos have special needs. Seriously, it makes for the BEST time.

Amy and I made arrangements to fill up our pool and have a bbq on Thursday. ( * AMY!! next time we do.. Please remind me the next day k! Anyone for that matter) I am so forgetful but I remembered that they were coming. Just forgot the important part.

We filled up the pool, had a backyard full of people and after a while everyone but Todd, Amy and Oli were left. We were able to catch up. ( NEVER go 6 months with out seeing people that totally "GET" you) We laughed, and laughed and ohh and awed over the 2 boys play.

Oli doesn't have words. He understands a lot. He expresses himself by screaming. Tyler has sensory stuff against screaming and has a few words. The common ground between these two... THROWING. We aren't sure who is better but for sure they are the best combination.

Oli has great physical skills and Ty has great other skills so that makes them a perfect combination. It was great seeing Ty take Oli's hand and take him over to where the toy is that they were throwing. Oli would get it, hand one to Ty and start all over.

Them playing gave me and Amy a time to hang out and talk and feel like some one totally gets it. And our hubby's ran to the store for our dinner. They were able to spend some time together. After dinner were spent even more time together.

It was the best night for all of us! We both needed it. It got us good and ready to go to our camping trip.

Amy and Todd have been amazing compassionate people. They struggled with infertility for over ten years. Then they had Oli. We now have Tyler and infertility stuff and Tyler. So we both feel like we have someone who understands what we are going through. It is amazing to have someone who gets it from both ends of it!

Thanks again for coming over. Next time, I promise to get pictures!

TY WON!

I recently entered a contest for a BARNEY DVD. Only because Ty's best friend is Purple and Barney and it is one that WE DO NOT HAVE!!

Well we got an email yesterday with a shouting HOORAY! Ty and I won. Sprouts is giving us a copy of the movie lend a helping hand with Barney, Bob the Builder and Fifi and ROARY! I am sure Kipper will be thrown in there to!

Thanks to LOVE THAT MAX and them hosting such a fun contest!! And a Special shout out to MAX who LOVES purple to!

We will let you know how the movie is and how much we love it all ready.

Thanks again Ellen. LOVE IT!

A birthday party!!

I have a ton of pictures from our last week in Arizona that I want to post but first in case I don't get them sent out SOON I am posting Ty's birthday announcement. We are having a BBQ here and would love all our friends and family to come. It is his first birthday with family ( since the 9 month first birthday) and it is super important to me this year. So come! We even have a awesome cake ordered! Rocket and the Little Einsteins will be all the rage!

*At church they announced it was the general RS broadcast. If you want we can have the BBQ and be at the church at six for the broadcast. *

And we would have had the weekend before his birthday BUT another party was already scheduled. Thanks in advance for coming. If you miss it.. Well I will hate but just for a day or 2. HEHE!

Dear Friend

Dear J,

The unexpected loss of you best friend has really struck a cord for me. The emotions I feel are SO raw. So many things I know you wanted to experience with such a wonderful person. Instead I know you are aching inside. Aching for the moments that you thought you had, that you thought what if and that you are wondering what the future will hold.

God does give us more than we can handle. He does. After 3 years the conclusion I have come to is that He gives us more than we can handle because he loves us. I HATE that. I don't want that kind of love. He expects us to rely on so many other people JUST so we can understand WHY he has a plan that is so far messed up from what we had thought.

As I read the updates of K, I recalled many phone calls to give consent for Tyler over the phone the phone. A transfusion, a surgery, a test. The day you found out he had brain damage, the emotions I felt being told that Ty has severe damage came rushing back. Now what do I do? That is what I thought. What will the end result of this be? Is it something I can handle?

I know the answer to that now. No. That is my answer. I know I can't handle it. I mourn something about it every single day. BUT, something else comes of it. The intense love that I feel for Tyler is what I can handle.

K is gone but Little K isn't. Now what you think you can't handle is sitting in front of you with Big K's eyes. His spirit radiates what you feel in love with in Big K. Your love for both will be so intense. Yet I know there will be sadness.

You are someone I look up to. Someone I admire. Someone that I know didn't ask nor deserve to be left without your best friend. I wish it wasn't part of someone else's plan. I wish that plan maker could have waited for a few more bucket list options to be marked off.

I have no words of comfort.

I have no words of wisdom.

I have a prayer.

I have a tear.

You have a Hero. And you are raising Heroes son

My best Friend Amy

In the mail last week I got an invite and announcement for the coolest and best thing ever. My best friend Amy is Graduating from her life long dream of Law School. Back in the day we had all these thoughts of doing it together. I went off on my mission and she kept trudging her way through school. I came back and we both started working towards degrees.

In 2005 I got married and started a brand new kinda of life and Amy continued to pursue her goal. She moved to Michigan and continued to trudge through Law school. She was the relief society president and a law student all at the same time. She did an amazing job.

Amy is such an amazing person. She knew the right time to send me a letter with chocolate in it. She knew when I needed someone. I was more than happy to answer strange relief society questions.

I am so proud of you Amy and was so excited to see you graduate. You are amazing and deserve that degree.

Do I get free law advice now?

The "lights" of the week

The Lights of the week were good and bad. Kind of mundane to but a few were really fun.

We had no therapy this week. That is always a kind of vacation for us. On any given week we have 3 in home and 1 out of home. All canceled this week so Ty got a vacation and so did mom.

Thursday was our busy day.

After a month of reschuduling I decided to bite the bullet and just go. (Ashley, I know you read my blog but the dentist isn't near as cool as he was when I was little. Oh I miss the days where every person who stuck their fingers in my mouth I had known FOREVER!!) We have been seeing the dentist for almost a year. As background.. He was a late teether. When he did get teeth they were strange and "not right." Some of them missing corners, some where yellow. After we moved here we took him to the dentist and have been seeing him every six months since.

We got in to see the dentist amazingly fast. I have NEVER been to a dentist that got me in that fast. We had our appointment at 1:30 and were done by 2. He took Ty's tooth brush and went to town. Ty, in true Ty fashion, screamed and screamed and then taking after his mom starts gagging. Because we happen to need a big old dose of antibiotics I didn't want to wear it so I got him to sit up. The dentist then dove right back in.

The Verdict.... Tyler needs caps. Thanks to life saving TPN we now have rotten teeth. Thanks to life saving measures he has yucky teeth. Thank goodness for socially thinking docs they come in White and no one will know.

The down part.. Sedation. Ty will have to go to a surgical center to get his dental work done. In order to do that we have to have a physical and his well "baby" ( haha) exam and in Arizona they won't give the three year old shots a day or second before they turn three. Not to mention we are booked out 3 weeks for well child exams. I lied and told them I wanted a sick kid exam then. I want this done before we start school.

After the Dentist Ty and I were invited to swim with some ladies in the ward. My new friend Mallory and Ty's new friend Kayden share the same therapists and will be going to preschool this fall were there and we had a blast. Sometimes it is nice to have someone who gets it around. We swam for several hours and came home to Dallas wanting to take Ty with him to the at&t store before our sitter was able to come.

Dallas got his new Iphone this morning and we have had a great afternoon together. Including a wonderful and yummy in my tummy steak at texas roadhouse. I think in a few weeks I will be taking Dallas to a yummy brazilian resturant... he deserves it.

I am so done this week... I have a headache and am so done with people this week. I guess here is to a new week... and less blah!!