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!

Botox and Seizures

Since there is no cure for cerebral palsy, we treat the symptoms as they arise. Sometimes we mask the symptoms we don't know are there because we are already on medication. And sometimes, we stick with one path of medication.

In January we tried botox again. We have stuck with Phenol for so long that I was worried about trying something new. Our doc in Utah wanted some botox on board and so we did it. But we went all out. We did the serial casting. We added an extra week on those. He did great. We had some behavior issues at school starting about this time. We did the botox, we did the cast, we knew that once we started on this route we would be putting him under every 90 days. OK, 91 days. So, on day 91 we went back in for round #2. We needed some blood taken and needed a lot. We are having some major endocrine problems and we needed a more accurate med level of his seizure meds he is on.

Dr. Bernes (our Neurologist) And Dr. Shafron, (our Neurosurgeon) worked together to get the blood work we needed. Tyler hasn't really grown in about 2 years. His weight hasn't moved for 2 years. He still fits in clothes he wore when he was 5. He just doesn't grow. With the seizures he shows, we need more medication but we can't, because he hasn't grown. It put Dr. Bernes in a small amount of a panic.

So while Tyler was asleep the procedure went great and they listened and didn't give him versed. The sleep doc gave him something so that as he woke up he would lessen the chance for a seizure and I took him home. This was really routine, so it was something I could easily do on my own.

Grayson was at his friends house but after I got Tyler, he was much more drowsy than he usually is. And we were training a new respite/hab workr, so we were just trying to get as much done in a night as we could. As Tyler and Grayson were playing their hearts out and all of a sudden Tyler stops dead in his tracks and his respite worker was 2 steps away. He went limp and we realized he was having a seizure. He wasn't responsive, he was weak and he was just gone. My heart sank. I made Dallas try to get the rescue meds in his mouth. But by the time we got them in, he was coming out of it. H didn't throw up, he peed his pants but everything was just so different than what we have seen before. It was horrifying to see a seizure start and stop.

Shortly after he stopped, he crashed. He feel asleep immediately and in a deep, fast sleep. I carried him up the stairs ( and this is another reason I want a one story in August!) and dressed him for bed and put him in my bed.

I slept across the bottom of the bed to keep him safe, only to realize that whatever happens in that brain, I can't save him from it. As sobbing and sadness and extreme guilt set in, I realized that this is our life. I have no control over what happens.

Sleep was few that night but the next day resulted in the adverse reaction team calling and us being put on the naughty list. We will probably not be able to do this next round of botox but will have to do something else. Our only option is in Utah right now. But right now, we are trying to sort through the behaviors and figure out what is behavior and what is seizures.

Cleaning much?

I have to admit I HATE cleaning. There is a mom clean and a kid clean and I think my whole "idea" is that if it is kid clean I can pass with the cluttered mess. I am not a hoarder. I just would prefer to not scrub my walls every other day.

I was looking back on my private blog and noticed that I have kinda been in a depressed funk for a while. I really noticed that the depression was really bad about a year ago and the fertility mess during the summer didn't help anything. Then we got pregnant and I really thought that I would have snapped out of EVERYTHING and just be this fabulous mom and wife and the works.

So that dream was quickly smashed when I realized how exhausted I was. I didn't realize that while I was pregnant with Tyler it was such a crazy time of change that I didn't notice half of what I did this time. I savored every minute and took a LOT of naps.

Now that I am feeling a LOT better and I am enjoying every move, kick and punch that I need to get my act together. Today was spent scrubbing from top to bottom my closet and my bathroom. It felt great. The dishes are done and laundry is almost finished.

I feel bad I wasted almost a year in a depression and a funk. What else did I miss? I realize how much I could have done better. I was sad about something that I couldn't and can't control. Fertility is such a HARD thing to go through. You feel alone and down and nothing feels right about it. But I had to get up and put on my pants and do what I could to function.

Now that I see that I was BARELY functioning now I can start to forgive myself and do a little better. Isn't that all Heavenly Father asks for, is just to be a little better. Do a little more.

Cerebral Palsy and a DUI

A week or so ago we were at Tyler physiatrist ( aka a Rehab doc.) appointment for a follow up. The follow up was for his phenol shots that he had during the summer to help with his cerebral palsy. During this visit it was suggested that Tyler is a perfect candidate for a baclofen trial and a possible balofen pump. As we were discussing details about the visit they inquired about our insurance and our coverage for Tyler.

( This is not a debate on insurance in ANY way. It was just what happened and I have a whole other post about what happened and why and insurance and all that jazz.)

When it was discovered that Tyler is not covered by anyone other than our private insurance for coverage they said they would not do the baclofen trial and he would not be given the pump. The reason for this is because it would cost to much for us out of pocket and they can't do that to the parents of these kids because the long term care is to costly.

Baclofen is a muscle relaxer. Without it he has continual muscle spasms. He continually burns calories and it hurts. It HURTS! It is like having a charlie horse 24 hours a days. As he grows the spasms will get worse. It will hurt more. It will cause him to lose the ability to walk if we aren't able to give him the medication and at some point he will not be able to function "normally." * Oh and the baclofen is on the 4 dollar script list at Walmart. It is a cheap, easy way to help*

This morning, a local news station showed a small trailer for a man that was arrested for a DUI. Though that isn't uncommon, the man was riding his bike AND he has cerebral palsy. Because of his medication to control his cerebral palsy he was arrested. He was arrested because the medication to make him NORMAL ( oh how I hate the term that was used but gee.. another blog!!) is what caused him to be arrested.

Tonight on Channel 2 news at ten they are going to show the Dash cam for the arrest involved. What makes this even more ironic, this particular officer has the MOST DUI tickets in the state.

The part that makes me frustrated, the only way for this person to be able to use his muscles is by taking the medication and by USING the muscles. Those muscles aren't going to work if he doesn't use them and if he doesn't have medication to help him.

Is it discrimination? How do I help my child grow up as someone that is looked at as beneficial unit of society?

Pity Party

To my Pity Party!

When: When things are NOT going that great.

Lots of Gifts please!!

Chocolate is welcome~

Today has left me super high on emotions and super down. Usually I am OK and usually I can pick up the pieces and figure out what to do. Today is not that day. I wish I could easily find a remedy because I don't have time to get stuck in a funk.

A little over a week ago Dallas and I got to go out on a date. I was so excited. I even dressed up to go. As we were driving to pick up Tyler he got really sick. At first I thought it was just the dinner not sitting well. We got to his parents house and he got SICKER fast. This has happened before and we ended up in the ER. ( 2 times to be exact.. once by ambulance) It was a Friday night so I thought if we JUST got him through the weekend we could get in to our family doctor.

By Sunday he wasn't getting any better so I took him to the Instacare. They ran some blood, said he was dehydrated and basically sent him home and told him to call his family doctor for more options. So we did. D got in on Monday( or Tuesday) and they sent him to get a scan of his tummy.

So he has been sick for almost 2 weeks and they still have no answers. We are getting close and tonight he had a HIDA scan for his gal bladder ( which we are almost certain it is) and he has an appointment to see a surgeon tomorrow. But he is sick. Which means he isn't able to help much. He sleeps a lot and can barely make it through the day. He isn't able to help with Tyler and it makes me super stressed. ( Not his fault)

In the midst of him not feeling well the Air conditioner in the Jeep went out. I HATE the jeep. I want to sale it so badly but being the awesome driver that I am, it has been in a few accidents. The last accident has still not been fixed.( think deductible.. High because of my awesome driving and a bunch of other stuff we would rather spend 500 bucks on.. Like food, place to live) So we are stuck with it until all the odds and ends are fixed. We took it in to get it looked at and get an estimate. $700 bucks. Yeah, we had a small anxiety attack.

Lucky for us my dad works at a place that gave me a amazing deal. We had bought tires and needed to head to my parents anyway but I was not expecting to go alone NOR was I expecting to go when I did.

Last week after a FULL day at Thanksgiving point and visitors and Dallas being sick I left around 8 PM and took the 2 hour drive to my parents with Tyler. He has the hardest time sleeping at home but here we are 2 hours away from home 2 hours past his bedtime. He was WIDE awake. He spent the next 3 days literally crying and whining. I rarely lose my patience with him. But for 3 days I was about ready to lose it. The drive back home was HORRIBLE. He would get so mad over nothing. It was 2 hours of crying. ( No he doesn't really sleep in the car. He was and usually is up the whole way.)

When I got home not only had I left in such a hurry but I left the house in a mess. A really bad mess. I figured that Dallas would probably be feeling somewhat better and he didn't have Tyler to worry about so he might be able to get a little bit done around here. But he was still sick. So I came home to a sick hubby, a gross house and laundry up to my eyeballs. Not to mention 3 days of non stop Crabby pants.

By Friday Dallas was so sick he ended up in the ER. They of course found NOTHING wrong with him. Since he didn't have a high white blood count he was sent home with pain medication and a script for a Hida scan. He was given a shot and sent on his way. Oh I was LIVID. They say that while it MIGHT be his gal bladder ( which I am really thinking it is) it isn't considered and emergency so call your regular doc.

I had already called a general surgeon/gastro/internal whatever you want to call him and made an appointment just in case no one could figure out what was going on with D. Luckily we are able to see him tomorrow. Dallas had the Hida scan tonight and he came home SICK SICK and pretty much in tears.

We have been doing stuff with fertility ( or Infertility) for several YEARS (boo!) and needed to start one of the medications last week. But because walmart didn't have record of a refill I had to call my doctor to get it done. He did, and added 4 more refills but I had to make an appointment. He sent in the refills after 3 times going to walmart. Which means I missed the day I had to start this stuff and therefore get to wait ANOTHER month. I LOVE my doctor but I hate having the reminder once a month that I am HORRIBLY broken. As I sat there today with him going over my charted cycles and fertility clinic info. I felt even more down. Not to mention my almost 5 year old not wanting me talk and getting mad because I couldn't pay attention to JUST him. Then leaving the appointment just as broken as when I came in with no answers.

Tyler. Oh how much we LOVE him and his new found talking. That is the best part of the whole summer. The hardest part is how he spans from a 2 year old to a 5 year old. That leaves me with 3 children in one. While I know we want another one I really don't think people get how difficult it is to have it all wrapped into one kid.

He can't walk far enough when we go to the store to not be carried. He is HEAVY. He is not "disabled" enough for a wheelchair and isn't "disabled" enough to need a walker. He isn't big enough for me not to carry him so I get to carry a 30 pound stiff muscled kid. Oh and then what do you do with a kid that is to big to fit in the cart seats ( and you can't get him OUT of them when you are ready to go cause his legs don't bend that way.) and you can't put him in the bucket of the cart cause you need groceries? Anyone have a solution to that one?

He can't do some things like other 5 year old kids so sending him out to play isn't an option. While I would love for him to go out on his own he can't make friends because he doesn't talk well enough. Plus he doesn't play like a regular 5 year old. So unless your 5 year old can play like a 2 year old then we aren't invited for a play date. And at 5 no one has play dates. They send their kid out by themselves. He does great with the 2 year old but you don't see many two year old out without their moms. I can't send him out to ride his bike because he can't pedal it. So I am having to push him (again.. a 30 pound kid that is pretty much dead weight) around on a trike that doesn't really work for a 5 year old. ( A trike for his "level" is around 700 bucks. As is a stroller. That would be 1400 bucks. Not covered by insurance and not including the 20 percent of EVERYTHING else, plus gas, plus fertility, plus a place to live. blah blah and don't forget food)

He doesn't have the maturity( or is it just imagination...either way he doesn't have it) level of a 3 year old to do imagination play so he doesn't entertain himself. So I am his source of entertainment. 24 hours a day ( or until he goes to bed) all day long. While I get that he is my "job" I am also a mom, wife, housekeeper and chef so add that to a child who can't do anything on his own but watch a movie. ( and even then I have to sit and sing with him or he gets upset) You have the recipe for a very stressed out person.

He is a good kid. I know that things are tough for him. I know he doesn't want them to be that way and neither do I. When you have the other stresses in life the patience wire just seems to be the first to go.

The bonus: at least this month I don't have the extra hormone in my body to make me even more emotional.

The downside: Dallas is still sick, Ty is always going to be this way and I am still infertile.

Four Walls

There are four walls. Four walls that create our home. Four walls that have created a safe haven and a place that is a shelter for the three of us. Not just in a physical sense but in an emotional one.

The four walls have given me a perspective of Tyler that I wouldn't change. ( The perspective I wouldn't change, but I would make things easier for him. ) In these four walls we don't notice that he is different. In fact the only time we notice is when we leave the four walls. />

When we go places people look and people stare. At first I didn't notice or didn't want to notice. Every once in awhile the people who were staring would whisper or say things. Sometimes it was just curious questions and they were innocent. Sometimes they would be cruel and point and stare.

I became aware of words. Words like Retard, short bus, and slow. All those words that mean hateful, mean things. Things that we all laughed about at one point or used so casually we didn't think of the others around us. With the delays and the life we live we now those words affect us.

As Tyler is getting older we know he will be moving into a world where he is very different from his peers. He doesn't walk with a normal gait, his eyes don't look or work like others, and his talking is far from up to par. He has different actions than most and he sometimes acts MUCH younger than is "ancient" almost 5 years.

But the one thing he isn't is dumb.

He is aware that he can't do the things that other people do. They are harder for him. He wants to join in all by himself but he can't. He wants to be able to hop on a bike and pedal up the street. He wants to be able to chase a ball in the yard and throw it up. He wants to be able to all of those things.

I don't expect anyone to bend over backwards to include Tyler because I know that isn't going to happen. What I do expect is that you teach your children. Everyone is different. Not one person is "normal" or "regular." Some are smart, some wear glasses, some have red hair and some eat with a tube. Just because they are different than them they aren't bad, strange, weird, stupid or any other term you want to use.

In the four walls of our home he has only known people who accept him and love him and play with him. That is ALL he knows. He only knows love. He doesn't know hate. He doesn't know that he can't do something. He only knows that when he wants to try something someone is there to help him. There are no mean words.

Only people who love him remember to include him. They invite him to do things. They visit him when he is sick, they want to watch him. They learn his words, they take his pictures and they otherwise KNOW Tyler.

I can't make the four walls any bigger. I have to hope that other people have taught in their four walls that its OK to be different.

Out of the WHOLE experience today it made my heart hurt that I was not able to shelter him from hearing those words. That I was not sheltered from hearing those words. It made me sad that when I send him out into the world that I have failed to keep him safe.

Day three

The doctor ( and moms) warned us about day three. Holy smokes they weren't kidding!

He was overall pretty good but there were a few times I really thought we were NOT going to make it through the day.

This morning 2 girls from our ward came over while me and Dallas ran to our appointment. We were gone for just over an hour. I had loaded him up with his pain meds about 45 minutes before they got there so he would be good for them. Lucky for them he was.

I made him lunch, which he didn't touch but luckily the girls were able to get a full Popsicle down him while they sat outside. When it was time for more meds it was so horrible to get them down. He cried, gagged and then settled in for a sweet little nap on me! ( oh and I had to hold him down and listen to that Garggling like he was drowing sound . BAD! )

Next round a few hours later was even worse and I had to take away his movies ( which about killed me!) I can't help but give him what he wants. Especially when he is sick. He was so upset about having to take the meds that he climbed on the couch and covered himself with his blanket. He really does think we can't find him if he hides.

He didn't eat much and we haven't seen much drinking but he did spike a small fever. We don't take his temperature because if we did I would be freaked and take his temp all the time. ( yes.. I know. CRAZY!) The Tylenol has been working when he will take it. Tomorrow I am going to try some Motrin.

We ended on a good note, but we always do when Dad is home. Plus he asked for Ice cream.

And what Ty wants... Ty gets!

Confessions of a Mother

I learned at the CBC that all my readers ( my mom!) want us to be totally honest and up front and divulge our "secrets" and share what makes us who we are and not be fake. Be Real! That the truth will set you free and others will find you who are in the same situation. It is all about support. Right?

So that is what I am going to do. I am following in the footsteps of my new friend Monica who talked at the CBC conference and taught a panel on Special needs and living in a Atypical world. She felt that Honesty was in the best policy for her so she even gave her own "out" about depression. She had NEVER blogged about her secret life with her xanax and depression. She must not have realized the rest of us have it too!

Well my confession isn't quite what hers was and mine isn't all a secret. But not everyone knows.

So here it goes.

For over a year an a half ( almost 2 now) we have struggled with infertility. We have seen every kind of doctor that we can to make sure that our pregnancy goes healthy and smooth (perinatologist, OB, urologist) and we have been waiting and waiting (and praying) for that little embryo to come on in.

We had to do medication in January to help stop the growth of my endometriosis and in turn had to wait 3 more months to officially "try" again. ( What's a few more months right?)

We got our plan of action from my trusty OB and we went home. Lots of new medication on hand. So with a lot of prayer and talking we decided it would be in our best interest to go ahead and get into a fertility endocrinologist ( aka a fertility doc.)

There were a few indicators that maybe we needed to get checked out. Being unsure of where the problem was, we sat down. Ready to hear all that they had to say. ( Or Not) No matter how much I knew there was stuff "wrong" with me it isn't the best feeling in the world to be told that there is a problem and then given a plan of action VERY quickly.

In our consult we went through family history, concerns and personal history. We had a few concerns and then our Doctor said " I am concerned about getting you pregnant and soon." So our plan was put into action.

We got all of our information. It was a lot to take in. There were A LOT of questions. One big one was cost. Our insurance that we pay a few grand a month for will cover IUI at 50 percent but not IVF. They don't cover a DIME of infertility medication. So of course cost is a HUGE concern for me. Dallas was quick to put me at ease. But cost is still a HUGE concern for me.

Our first cycle seemed to fly by. We started with an ultrasound, ordered medications and did blood work. A HSG was scheduled and done. This is where we hit our first snag.

The HSG is not suppose to be painful. Unless of course you have a tipped uterus or something blocking your tubes. Though my tubes came up fine ( you find out after if it is ok and mine were clear) my uterus was tipped. Badly. Out came these MASSIVE tweezers looking things. Needless to say I did not fair well. I went home and totally crashed in my trusty sweat pants. I thought things were going good till a few days later. I woke up sick. VERY sick.

Turns out there is a SLIM chance of infection when you have an HSG done. Well, we had a slight infection. I was sick for about 2 days and just laid in bed. Got some antibiotics and felt better in a few days.

Next we went in for our ultrasound to see if my body has some eggs. Low and behold NOPE. Not ONE. It was really hard. REALLY hard.

Our clinic decided it would be in our best interest to do some estrogen pills to see if my body responded. It was really hard to take the estrogen knowing that it was "waking up" my ovaries which in turn my endometriosis grow. But Tuesday we had our ultrasound and things worked.

For our next cycle we have a new protocol. We went from a Clomid cycle to a FSH cycle. This is a daily injection ( MUCH more costly than the CHEAP clomid) and a much more painful cycle in hopes that we get at least one egg.

New medications were started and the cycle is almost ready to begin.

That my friends is our big confession. A deep dark one!

You can find the daily writing of it over at Fertility fight

We struggle with infertility. We REALLY want a baby. We don't want to adopt and I have not gotten to the point where we are OK with just being done.

In the Middle of the Night

With the bus incident this week I have had a HARD week.

Hard.

Not only was MY emotions out of whack but he wasn't feeling well. He had Rotovirus since last week and just hasn't felt well. Thankfully that resolved before sending him back to school on Wednesday.

My emotions, however, were not getting better. But a realization of so many things. A self reflective kind of emotion.

The night after Ty was forgotten on the bus I was awoken with the very distinct memory/dream or thought to say a prayer. I don't know why and I don't know what I was suppose to say a prayer about but given my experience in the past, strange ideas come to you in the night and you better act!

Ty got up soon after that and it was early. We went downstairs and started a movie and got breakfast for him. I laid on the couch and the thought came again. So I acted again.

I was laying on the couch ( I am not kidding.. it was EARLY) and my thought was "Maybe you know how it feels to not hear from your child. Yours was 40 minutes. When was the last time you talked to me."

And the "idea" was shocking.

I pray. But how long as it been since I have really prayed? How long has it been since I realized just how important Tyler is and how many blessing he brings to us. That with the trials he is the ONE thing that is the most important for Dallas and I.

The panic of NOT having Tyler here was more than I can bear. He is the sun and the moon. He is the world to both of us! Never again do I want to feel like my world just got turned upside down. In doing so, I need to remember where I came from and be thankful. And share that thanks.

Give Thanks. Hug the ones I love.

And Tell them often.

I love you.

Left Without A Voice

It's just after 12 and I rush downstairs to wait by the window.

My little dude is suppose to be home soon. He has NEVER gotten home after 12:10 in his whole preschool career.

I sit by the window watching.

Waiting.

The noon news ends and it is 12:30 and STILL no Tyler.

I call the school and the teacher says he has been put on the bus. Her part is done. Here is a number. I feel a lump rise in my throat and call the number. The rude lady on the other end gives me ANOTHER number.

12:35.

Where are they? We live less than half a mile away from the school.

Something is wrong.

12:40

The lady gets back on and says that the bus had a few extra kids today and they are on their way.

12:55

FINALLY the yellow bus rolls up.

The bus Driver explains that a mom forgot to be there to pick up their kid. So they waited a little longer. Then went about their route. They were over by maverick ( not sure WHICH maverick there are 2 one CLEAR in town and one JUST up the street) and realized that they still had Tyler on the bus. So they finished what they were doing and brought him home.

Sorry... it wont happen again.... And the Aide pipes in... didn't you get my message?

No missed call on my cell phone.

AND I was ON my phone so no message on my machine like she claims.

Tyler ALWAYS sits right behind the bus driver. How can you FORGET? And you have a lady who's job it is to MAKE SURE all the kids are off the bus and safe.

It is your job.

Tyler is non verbal. He doesn't really "talk" He can't tell you what his name is. He can't tell you something is wrong. He can't tell you you forgot to take him home..And most importantly he can NOT tell ME that they hurt him.

He was on the bus for 45 minutes. MUCH longer than he NORMALLY is on that bus.

Panic. Fear and then worry. Replaced by a sense of relief that he was home.

But who do you go to? I waited till I was done being SOOO mad.

I called the district transportation. They apologized and said they were sure it was a sub. I assured them it was his real bus driver.

I feel mad.

I feel angry.

I feel mad at myself.

I feel sad.

How could I leave him without a voice?

My MOST prized possession in the WHOLE world was left without a voice

Family~

Grandpa and his pallbearers

It was cold and the ground was slippery. Plus I think my brother is handsome
and a pretty nice guy.

My uncle Larry gave a awesome and very spiritual prayer. He is a tough guy and seeing his emotions makes me realize how real we all are.

This guy is cute! He is getting so old that he had to have his wife stand behind the flag and help hold him up. But he was so Proud do be a vetran.

Grandpa had beautiful flowers and sprays. I loved them. He truly is a great man.

More on Grandpa Rue a little later

My faith and Germs. Yes they go together.

Something happened tonight that really struck a cord with me. Along with some "innocent" comments from some unnamed people I thought I would take a few minutes to address something. Not to take way from our HOORAY on the post before ( so scroll down and jump up and down) and then get settled. It might take awhile.

So, to start I just wanted to share a little bit of what I believe and then a little lesson in GERMS. Like I said it is going to be a little lengthy. ( Germs first!)

Growing up I can only vividly remember missing church MAYBE 5 times. Most of the time that church was missed by anyone in our family it was because we were sick. Like the sick person would stay home and the rest of us would go to church. While at the time I didn't think a thing of this I do now. In fact I think a great deal about it. And as I think about it I get kinda mad. And a little bit on the paranoid side.

If one of us was sick that meant that EVERY SINGLE ONE OF US were sick. We were carrying a germ. At the time of growing up I didn't think about it because it wasn't a common occurrence and our ward at home was not that big.

Fast forward to 2005. In September you will recall the birth of a one pound baby. (If you don't read the freaking archives or the October Salt Lake Tribune, or click on a "tag" on my blog labeled MICRO PREEMIE... or better yet google it) (Like I said... I am a little ticked.) Anyway, while in the NICU our favorite Neonatologist cautioned us on germs and how things are spread and strict instructions were given on what is the WORST place to get germs. Church was the NUMBER ONE ON THE LIST. Why you ask? Because of the above for mentioned actions of Yours truly. Because one of them go to church carrying the germs that I would then pick up and take with me in to the NICU.

Fast forward 93 days in 2005 ( give or take) and we get a 5 pound newborn home and guess where they say we are NOT allowed to go. That's Right CHURCH. We wanted to have him blessed. We opted to do it at Church. Tyler came in after Sacrament had started and he left before it was over to avoid all the germs. We talked with our Bishop at the time and they brought the sacrament to us. The Relief Society sent one person a week to check on us and the Bishop stopped by. Making sure we were OK and that everything was going OK. That ward understood why it was important for us to NOT be there and to understand that we had and still do have faith and a belief in our religion.

Fast forward to 2009. That's right. While I no longer freak at every possibility of getting germs when an out break of something happens we tend to shrink away from heading into Church. Also keep in mind that we are not talking about a Utah ward of 200 or so people our ward is currently 800 people. That's right 800 people. If even HALF of them have been exposed to the flu we are talking 400 people who are sick. Its not a pretty idea for me. I get Anxiety even thinking about it.

My lesson to you...... If you have been around sick people or cared for a sick child keep your entire family home from church. They are sick. There are people who would LIKE to go to church and enjoy sitting in Relief Society without hearing, " My husband is home with our 3 sick kids so I could come to church" REALLY... Come on. I am no sitting next to you, where I will then bend over and pick up my kid and have the GERMS you brought to church go to him.

And just for your FYI and reading pleasure: KIDS WHO ARE BORN AT LOW BIRTH WEIGHT ARE CONSIDERED IMMUNOCOMPROMISED. NOT IMMUNOSUPPRESANT. BUT IT MEANS THEY GET SICK MORE THAN A NON IMMUNOCOMPROMISED PERSON. If you don't think they are that is fine. Let me tell you about the Swine flu post. Guess who got it. Tyler. Guess who didn't. A immunosuppresant person. So yeah.We catch things.

OK so that is my rant about sickness. And in the words of Barney " Keep your germs to your self don't give your germs to anyone else."

OK. Now on to my faith. Somewhere between leaving the nest of my parents and the feeding of the gospel being bird fed into my mouth I had to make a choice. I loved church as a college student and attended every week. I held various jobs. Some I loved and others not so much. I learned so much from one particular calling. I was the relief society president for over a year. I also worked full time and was attending UVSC. Yet I seemed to have it all together and worked hard. During that time I got the bright idea that I wanted to serve a mission.

I took out a loan, paid off my debt and started to get ready to go on my mission. It was while I was getting ready to serve my mission was when I came to the understanding of what the Gospel really meant to me. I have also grown and changed in what my Faith is since having a child. So please bear with me as I share a few of my thoughts.

I got called to Indiana. It was not the exotic mission of choice. I was with a bunch of girls that were going to Durban South Africa and I was going to Indiana. So, I struggled. A lot. Until I moved to South Bend. That is when I figured out a lot of things.

That is where my testimony grew and where I became a rock. Meaning, No matter what I have a belief of what I taught that no other faith or no matter what is said I know what I believe. This is when I met a few people who totally changed my life.

When Tyler was born we had a bishop that was not supportive of anything that happened. Because of this lack of support we moved. We really needed a support system. We moved into a ward that was very supportive.

When we moved to Arizona we were excited to start our journey. Ty was healthy and we were no longer in RSV season in Arizona so we got the go ahead to head to Church and we did. We went often in the beginning. When cold and flu season came around and we realized how large our ward was and how yucky it was we cut back. Then came time for Tyler to start going to nursery.

This is when my faith changed. You see. I still have a very very strong belief in the gospel. I listen and strive to do what is asked of me. But I have a hard time with this teaching of tolerance and the actions of others that is NOT tolerant.

When Ty was ready to go to nursery we took him in, sat with him and had his walker with us. We were told he was NOT allowed to have his walker because we had such a larger nursery he would run over the other little kids. So his only Independence was taken away. But what about all of the other kids that would run over MY kid. I felt that no understanding about our issues. So we kinda back off and since he couldn't go then we were backing off.

A year came and we would go sporadically. When he got old enough for sunbeams we took him and he would go and we liked it. We have gone most weeks since then. The ward is 800 people . Just because you don't see us doesn't mean we aren't there.

When we got back from vacation we had the swine flu. We were sick. We couldn't go anywhere. Including work. Let alone to church.

This week we didn't go to church because the person who is doing respite for us had the stomach flu. Meaning we were exposed and we KNOW that they won't missing so we didn't want to add more germs. We stayed home.

Fast forward to tonight. Its dinner time. the doorbell rings. The Elders are standing on our doorstep. We invite them in. Offer water, bathroom and then their question comes. They were told by a family that we were less active. That we were struggling and would probably benefit from them coming over.

We told them that was fine and they set up an appointment to "teach" us so they have a chance to get in their lessons for the week. But what chaps my hide is the above.

1. If we are struggling then why is it that we don't have a priesthood holder EVER over to our home. We have never once seen a home teacher. The few men we do know are not " friends" nor our home teacher. When called they are usually busy or not answering. Which leaves us to attend to brain surgeries all alone. With no other person to help administer to our child.
   
2. Why is i in a ward of 800 people I have ever visiting teacher over the age of 60. I have no friends, no family. Could you please give me someone that I could possibly become friends with.
   
3. Ty has had 2 brain surgeries and there has no been any support from our ward. No volunteer to bring dinner. No help for us. No support.
   
4. We have no friends. Our ward is not friendly at all. Unless you belong to the clique they have had formed for the last 6 years you are not invited.
   
5. Tyler is different and though they all claim tolerance they have NO IDEA how to actually show that tolerance.

I have had mothers say that Tyler is retarded. I have had people stare and laugh at him. All of this in a place of worship of some one who taught us to love everyone. Someone who said to suffer the children.

Instead you send the Elders over to my home to teach me and to tell me to go back to church when we never left. We just have to take it at our time because of the ignorance of others.

As I was deeply hurt by tonight's actions I read and reread an article by Boyd K. Packer. It is an article that has left me in tears tonight.

Some point from the talk:

1. It is my intent to teach doctrine which, if understood, will reinforce your courage and endurance, even foster a measure of contentment with circumstances which you did not invite, do not deserve, but from which you cannot turn away. We didn't ask for this. We didn't deserve this. Tyler didn't ask or deserve this. But our love for him we can not turn away.
2. Afflictions come to the innocent. Tyler is Innocent. He did nothing to deserve this.

3. Never Ridicule.

4. Parents, take time in the next home evening to caution your family never to amuse themselves at the expense of the handicapped or of any whose face or form or personality does not fit the supposed ideal or whose skin is too light or too dark to suit their fancy. Teach them that they, in their own way, should become like angels who “move the water,” healing a spirit by erasing loneliness, embarrassment, or rejection.
   You are all claiming to teach tolerance in our ward. We have seen no tolerance. We have not even seen love. Judgment and words like Retard have been thrown our way.

Think of this: Unless we die prematurely, every one of us may end up both physically and mentally handicapped. We would do well to make advance payments of service and compassion on which we may draw when that time comes.
Pres. Packard continues:

Why not help the parents who have extra things to do and extra expenses and are confined because of a handicapped family member. Encourage the teachers and social workers who show such devotion to them. And it would’t hurt you to donate a few dollars or a few hours to one of the many organizations which help the handicapped. If we do this, without the slightest idea of selfishness, it will remain in our account against that time when we may need help. And the works of God will be made manifest in our lives.

“Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation.

“For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but is nigh at hand.” (D&C 58:3–4.)

Why is it that they can't do that. Why is it that I am feeling alone? Why is it that I walk this route with no help from those very people who teach the above mentioned things.

I truly believe in the gospel of Jesus Christ. I truly believe that when we get to the next life Tyler Will Be whole. I honestly believe that. I honestly believe he is a miracles. I believe that Joseph Smith is a prophet of God. I believe in the Book of Mormon. I study and read often. I am sad that those in our ward and some in our family can't understand the plight we are in. And that you can't support us.

I am saddened. Please come and walk a week in my shoes. I know I have a child of God that I am raising. I am feeling that every day. I recognize the miracle that Tyler is. He is such a special spirit. I wish that those who have felt because we are not "Active" could feel the spirit we are cultivating.

Practice what you preach.