How do I raise my child?

A Mormon family in Utah has been putting their son’s journey of a terminal form of Muscular Dystrophy. The boy, Mitchell, was doing great. But quickly his position changed and they found that his disease was killing his heart and fast. While working on getting an LVAD, they documented his last  few weeks, and ultimately his last few days and hours. His father documented the journey in amazing and heart wrenching photographs. What I wonder, was how this mother was and did, raise her child knowing and teaching him about dying? How did she do it with strength and dignity? Of course, I wasn’t there behind closed doors, but the questions still looms, how do you raise your child to die?

Today we had an opthamologist visit for Tyler. We truly do love our eye care team and Tyler, especially, LOVES his vision therapist and teacher at school. He calls her Jenny the Pirate. We had a terrible, TERRIBLE visit with an optometrist ( there really is a HUGE difference)  a few weeks ago but we knew that we just needed it for a  few things at school. But this doctor, Dr. S, is different. He is a retina specialist. He deals with ROP and kids like Tyler. He is very good and very through. He is also very bold and very honest. He never sugar coats things and we are able to get good information for what we need.

Tyler hit a growth spurt the last few months. He really has put on some weight, and grew bigger. While that is a blessing for us, it has wrecked some havoc on his body and his conditions. One thing I didn’t expect was that his eyes would be affected by him growing. This recent growth spurt has caused him to  become more near sighted. We knew that as he got older that he would have a harder time seeing. But I thought when he was 18 or 19 or older. Not 7 or 8 or even 50. The reality is, I never thought he really would get “worse.”

His script went from -13 to -16 in a year. Correction doesn’t correct his vision to even legally blind. He is amazing at compensating and he has great “functional vision.” We have done all that we have known to do to keep him seeing. We make sure that his ability to get what he needs is done. But we do not know how to stop or slow down the progress of his ROP and his nearsightedness

(This is what 20/500 vision is. Tyler has this picture WHEN CORRECTED!! So WITH GLASSES)!

For Tyler, we still see the opthamalogist every 3-4 months. They are still worried about his retina’s detaching and him going totally blind. The older he gets, the better he will be at telling us that something is wrong with his eyes but ultimately it will be with the follow ups that we catch it as early as possible.

What hit me hard, was how do you raise a child to become an adult that will not be able to see?  How do you teach him about all the wonderful things that there are in the world, yet he sees none of them? We are teaching him a song about all of the wonderful things that Heavenly Father has given to us, yet he is denied seeing them?

For today, I am sad. Today I look at photographs taken from amazing people, who see and takes photos of amazing things. I want to pack them all into a short time so that Ty  can see EVERYTHING. Experience everything. Even with the  limitation physically, I want him to see everything he can. I don’t want him to lose what vision he has.

What I selfishly, don’t want him to not be able to see, is me. I am selfish. But he is my baby. I want him to know who I am.

How will I  raise my sweet, amazing, miracle to grow up blind?

Liebster Award- Special Needs Edition

This Journey in our life nominated our blog for a Liebster Award. As I was browsing through her blog I realized just how valuable her blog will be to us! Her daughter is visually impaired from none other than the dreaded ROP!

In participation with the official Liebster Award rules, I will get to share 11 random facts about Tyler, and then sharing the answers to Rachel’s questions. I hope you guys enjoy the read, learn something new about Tyler and get to know more Special needs parents!

11 Random Tyler Facts 

1. If you read him a book and he likes it, he will have it memorized. Annoying, but it tricks people into thinking he can read. Sneaky toot! ( But he can read, just not all some thinks he can!)
2. Holidays are HUGE for him. He loves to have parties. So much so, that dinner every night is a special tea party in which we all get to take “Nibbles.” He also knows when all the major holidays are and asks frequently what we are doing for them. 
3. Tyler doesn’t drink anything but Dr. Pepper or Coke. Basically anything without fizz makes him gag due to sensory issues. We try, but after getting caffeine every day of your life for a year, it doesn’t phase him. 
4. Tyler LOVES jokes. He makes them up daily and about everything and laughs so hard and so long. He loves making people laugh. 
5. He loves movies. He goes back and forth between Disney Junior everything, to Sesame Street to the dreaded Barney. I am fine with all but Barney.
6. He has weird names for everything. He calls his school the flying fairy school. My mom is Grandma the Old Lady. I am Mommy the Kelly the girl. He was Tyler the professor for well over a year. He is now Tyler The Brown. And we don’t get to deviate from that name without him correcting us. 
7. Ty loves Goofy and Mickey Mouse. 
8. Ty thinks he is a pirate. He thinks he is Jake the Pirate and that his Vision teacher, Jenny, is also a pirate. He talks like a pirate when he talks about Jenny.
9. He loves school and loves to learn but really struggles and gets angry and says he cannot do it any more when he has to work really hard. 
10. He is a great bowler
11. He LOVES to ride bikes and loves to have friends and loves to be where people are. 

The questions that Rachel at This journey Our life asked are below: 

Questions for nominees to answer:
1.  When did you embark on your special-needs parenting journey? (share your child’s diagnosis story)

         This will be the quick version because we have it written out ( twice) by both of our perspectives soon after it happened. But around May of 2005 we found out we were pregnant. I have endometriosis and was told I would probably not have any kids or would have trouble conceiving but he was a welcomed surprise. After the shock wore off, we realized we would be getting a Christmas baby and jammed a semester of school in while I was pregnant. I had complications from the start and the pregnancy was VERY hard. We found out the first of September that we were having a boy and less than 21 days later he was born. He was 25 weeks and 3 days.  He suffered a IVH grade 3 and 4, hydrocephalus, ROP and a spent 93 days in the NICU. Since, he has been diagnosed with Cerebral Palsy, hydrocephalus, is legally blind and has some sensory issues, developmentally delayed and has speech issues.  He is now almost 8 and in the first grade. 

2.  How do you balance spending time with your other (non-special needs) children? (if applicable)

      We do have another baby. Lucky for us, when we decided to have another baby we had massive secondary infertility issues. At the time, I didn’t think it was “lucky” but it has allowed me to be Grayson’s mom because Ty is in school a full day. We take Grayson with us to all of Tyler’s appointments and he loves being with Ty. He tries to keep up with him and wants to do everything. I often feel a little guilty that I don’t get as many activities to do with Grayson because with Tyler we had therapy 3 times a week. We had people in the home for therapy and fun music classes and we don’t have those with Grayson. Grayson is also a very hard baby. He tends to be a little more needy so I do feel a little frustrated when I don’t manage everything just right. But we are happy he is here. And as far as adding more to make me have to manage better, that won’t be happening. I had a hysterectomy in December, so I get to just relish the last of my babyhood with Grayson and enjoy the journey. 

3. Share an act of kindness someone has done for you or your child.

    The biggest one for us was being nominated for a Make a Wish trip last summer. Tyler wished for a trip with Mickey Mouse on a pirate boat. Because of his visual impairment the trip was just what we needed.

 But, on a even smaller but more significant act of kindness was when Tyler was invited to a birthday party. The little boy, Jake, was in our ward ( our church boundaries) and he brought an invitation over to our house and Ty was able to stay there all by himself. He was welcomed in by his mom, Christi, and he had such a good time. He has never been invited to another party and it really made my heart happy. 

4.  What is one thing you want people to realize about your life as a special needs parent?

     We have a few people in our lives that have Chronically ill kids. And while we see the struggles they live with they are not totally disabling conditions. There is no damage done to their brains or their eyes. They can, and most likely will, go on to life a fairly normal life. With being 7 and still not able to use the bathroom, we don’t have any idea how he can live on his own. He can’t make his own cereal, he can’t take care of himself while we run to the store. He can’t change the station on the TV to something. I am doing all of it for him. I dress him, change him and entertain him. Even while riding a bike, with his visual impairment I can’t just let him go. Someone has to be there to watch for cars. The “normal” things are just not possible for us.  While most things are just normal parts of life, most anything outside our daily lives have to adapted. People don’t always want to make the changes with us and we are left out. A LOT! Raising a child with extra needs is lonely and there isn’t much support by means of others not playing the “my kid is sicker than your kid” card. There are very few that get it. And don’t judge what you don’t know. There is a lot of judging when it comes to our choices at parenting . 

5.  In what ways has  raising a child with special needs affected your relationships/friendships? 

You tend to lose your “normal” kids friends. But you gain, and tend to gravitate to a few really great friends who are walking in the world you do. My best friend, Stephanie, lost her child but still seems to understand what I am feeling and why I am feeling those things. She is always there for me. And my besties Amy, oh what a life saver she is. Her husband and my husband were best friends. They have a child with Autism and I NEVER feel like I am alone when I know she is a call or a message or a Facebook chat away. 

As far as my relationship with my Husband we have really had to work at making it work. We were told the night after I saw my baby for the first time, that this would either make or break our marriage. We have had years where everything is awesome. There are times we really struggle. But we have found we HAVE to date. We need to date more than anything. The need to have time together, talk and make the right choices for our whole lives has to happen but the only way it does is by dating. If not, that is when it is REALLY hard.

6. What brings your child the most joy?

EVERYTHING. Ty gets so excited about the smallest things. He loves movies and buying a new movie would make you think he just won the lottery. Bringing him home a soda from the gas station is like Christmas. He is seriously such a awesome kid!

7. If you could describe your child in three words what would they be?

Loving, Smart and Stubborn

8. What aspect of your child’s special needs has been the hardest to accept?

His vision is really having a bigger toll on us. Realizing that he can’t see what we thought he could and that more things needs to be adapted than we thought has been really hard. Some of the things said in his CLVE were so hard to hear. The other part is accepting that we JUST might not be able to have him life on his own and be married with kids. But that is far in the future. For now and for the current time, his vision is the hardest. 

9. If you and your child could take a dream vacation where would you go?

We DID take a dream vacation, but knowing how much we loved it we would love to go back on a Disney Cruise. There are many things that we know now that we can make his experience even BETTER by doing it again! 

10. What’s the most important lesson your child has taught you?

The biggest lesson is love. He knows no hate at all. Nothing. He understands being left out and being sad, but he doesn’t understand when people are being mean or saying mean things. He doesn’t care. He just loves. Innocently loves. It also turns into innocent faith. 

11. What advice would you share with a parent just beginning their journey of parenting a child with special needs?

I would tell them that no one knows that your child will do. No one knows what things will happen. No textbook will tell you anything. Ask a lot of questions. Read and read and read. Cry when you need to. Take a break when you need to. Take a break from therapy if you need to and most of all, you are doing the best you can. If other’s want to judge you, let them. Your shoes are full. They are uncomfortable to wear and they aren’t always cute. No one wants to wear them. So do the best you can. Oh, and it’s OK to have a bad day. It’s OK to feel negative and it is OK to be a little angry and hateful and bitter for a while. It gets different and easier to deal with. 

CLVE

Clinical Low Vision Evaluation. 

That is what we did the week we were getting better from the Flu. And the truth is, it was NOT very fun and I left feeling so down that I spent part of the evening in my bed crying.

So the CLVE was set up through the Foundation for Blind Children of Arizona. We went to a location that was LOADED with as many snow birds as could fit in one location. They were all trying on canes, and getting equipment and stuff for the Macular degeneration and glaucoma. Instead of books to read, they had CCTV’s available so you could read the magazines that were left on the counter. The wall was filled with AS SEEN ON TV keyboards. It was a blind persons dream.

Ty was totally cool with the CCTV’s and we read a few books we brought with us. I filled out the countless pages of paper work and his vision teacher came to met us. Her name is Jenny. Tyler calls her Jenny the Pirate.

To make sure that Ty was at the top of his participating game, we kept him home from school. He had only gone on Wednesday and Thursday because of the flu. Ty had a low low key day, and he was properly bribed to participate.

So what is a CLVE, well we sure as heck didn’t know. So this is what we learned.

1. Intense background and medical history of the patient. In this case we actually struggled to get our doctors in Utah to provide us with a detail of ANYTHING. They just switched doctors and it was a real struggle so we went off the last detailed list of stuff that I had sent to school. Which in fact, was NOT what I had actually sent to school but lesson learned for me. Keep a better record. 
2. Depth perception, color testing, contrast of color, light sensitivity, ability to process what they see. While that seems like a lot, most can be done in a series of a few tests.  He did really well and they were very hard for him to do. When things get hard for him, he does a few things that signal to me that we are going to meltdown soon. 
3. Eye exam with the big chart. Ty does really well with these. He did what he could and then the sadness and meltdowns came into play. 
4. A lot of the rest of the appointment was what was Tyler like in a school setting, home setting, a situational setting. This is where it gets more and more frustrating for me as the mom. They also talk about future goals, things that will be happening and things that won’t be happening. Things that we can see as progression and things we can see as he gets older and things that we can expect as he gets older. 

The purpose of the CLVE was to get a specific piece of equipment that can go with Tyler throughout school. It will enlarge his papers, allow him to write, and also allows the computer to help him read when his eyes are to tired to continue to do so. Right now, he is minimal things that require long term memory to read, so it isn’t as much of an issue. But later in life, it will be. Especially when chapter books and texts books come into play. For now he needs basics, but he needs something basic and then some. 

Ty will be getting a Davinci CCTV for his class and it should follow him through school at the district. We are pretty impressed with the Davinci and really like it. It has way more features than he needs right this second in time but as he grows older he will need what it has to offer. 

We have found he has a severe sensitivity to light and should be wearing sunglasses, but transition lenses don’t come in his prescription and getting him to willingly change into sunglasses is a joke. And because his vision is crappy even with correction, he fights us to even wear those. 

His eye sight with correction is still really bad. He is known to have about 20/500 vision. That is REALLY bad. The picture below is what he sees even with correction. 

For now we work with Jenny, the pirate, Tyler’s vision teacher. She helps everyone enlarge everything and make sure that it is in the size he needs and how to help him do better. 

Ty doesn’t notice he can’t see, He pretends he can. People don’t realize he can’t see. We are trying to accommodate him in every way possible and to help others adapt to him in whatever way possible. My calling at church is his teacher, which has opened up a dialogue with the Church’s disabilities department to get some better visual impairment products and books. We are also trying to figure out what we can do to provide him with the stuff we need here at home. 

So don’t get to alarmed when he doesn’t know who you are or he wants to touch you or comes up really close. He is super smart and will remember who you are. He is also learning to get to the park on his bike with no help ( of course he won’t ever be able to go without someone following him because he can’t see cars coming down the street!) but he is doing really well navigating in a world that was not meant to be seen in the dark. 

The Blind Driving

When you are pregnant and have a kid you dream of all the milestones that will be coming in the next 20 years. One big one is driving, drivers ed and your first car.

Ty has nystagmus and ROP. His ROP is severe. Though it didn't leave him totally blind he has severe vision loss. His script borders legally blind. Even at 4 we don't know the full extent of his vision loss. The nystagmus doesn't help. Because of the movement it makes LOTS of problems for the vision. It makes it so that driving is almost impossible.

Recently, an article and news story came out about a car that is being made by Virgina Tech that is giving hope to the legally blind. Giving them a hope for DRIVING!

With a new technology called "non digital interface technology" people with vision impairment and blindness have been able to drive.

It uses a series of vibrations, signals and sounds to tell the blind person where to turn and how to stay away from other hazards in the street all while driving. The foundation for blind people were impressed with the showing at Daytona last week. A prototype vehicle is going to be made by Ford using a Ford Escape which will be equipped with the new technology and will be shown in January.

I think it is rather interesting and I wonder in the next ten years what technology will be coming up that will help kiddos like Tyler. Can you imagine the independence he will feel with the ability to drive!?

Can you imagine the possibilities?

A few conversations I have had this week!

I have had a few very interesting conversations the last few weeks about education and the "right" place to place Tyler for Preschool. It is just preschool and I know he won't learn how to do times tables or even read in preschool so I shouldn't be to concerned. WRONG!? Though I know that he won't be solving world peace of even the health care reform problem it is important to get him the in the right place to get the right services so that when he is 8 he can solve those problems (Sarcasm noted!)

When we moved to Arizona we were not in the school system so Early intervention was all I had to set up. It was a maze and once I figured out how it all worked and was tapped into resources the maze was not so bad. The services were pretty good and when cuts where made I wanted to speak up but nothing was cut of ours and we knew we would have it much worse someplace else.

Once we got into a place we liked we stuck with it. We have been at Coester Cares for over a year and a half. We like it. We have gotten so that Ty is doing so well with his therapist and never cries. Though Jackie and him have stubborn fights a lot! They are a awesome support system for me and a great team for Tyler.

Arizona long term care was amazing and the transition into preschool was pretty uneventful and we learned a lot for year number 2. First year of preschool was what we felt a trial run for this year. We looked at other options and thought of the school for blind children but made a different choice and got him in a different class. The class this year is amazing. It is exactly what he needs.

So our choice to move to Utah was not as abrupt as it seems. We had jokingly talked about, prayed about and then it was presented and we jumped at the chance. Yes we are moving quickly, but most everything is falling into place.

One of my major responsibilities is to get Ty in school and figure out what services and where to get them is my "realm." Doctors are hopefully going to be our old favorites: Marissa, Tim, Dr. Walker, and Dr. Larsen. We are adding Dr. Gooch and possibly a developmental ped and MAYBE a neurologist is the above favorite of Tim and Marissa wont' drug our child!

Those were the east set up. Its been the SCHOOL that has been the hardest. Conversations have gone like this:

CALL one:

Me: Hi, we are moving from another state and need to know where in the district we will be attending.
Lady: What grade?
Me: Preschool. He needs the special needs preschool and I am not sure what school has them and I would like to know what school we would be possibly attending.
Lady: Um yeah we don't give out information like that.
Me: Um could you transfer me to the preschool department.
No one was there to talk to. I left a message.

Message was returned the other day.

Frank: What information were you looking for?
Me: What type of services are offered in class?
Frank: well you know he has to qualify right?
Me: yes we are currently getting services here in Arizona.
Frank: Do you know what his services are called
Me: Yes he gets all of them OT,PT, Speech and vision and music
Frank: Oh yeah he would get services.
Me: where is the preschool closest to us?
Frank : I don't give out addresses. We don't know you.
Me: Um I just want to google the vicinity so I know how far we are busing or taking him because I would like to look at the school for the Blind.
Frank: You know you have to qualify for that?
Me: Yes. Do you know what the qualification's are?
Frank: bad vision.


Today my conversation went like this:

Blind lady: I heard you wanted to know about preschool.
Me: Yes. My son needs vision services
Blind Lady: How do you know?
Me: He is almost legally blind and has nystagmus and ROP
Blind lady: Oh yeah.
Blind lady: Do you know your district
Me: yes, they have a current IEP and have all the stuff they need to tell us what we need but I want to know what services you have
Blind Lady: Oh well we won't tell you what they are until we know what we can give you.
Me: Where is the preschool.
Blind lady: We cant' give you our location.

I said thank you.... and hung up.

Coming from an education family, I fully plan to support public education. I also know that as a parent that the teachers want you to be involved. I love to know what he does in school so we can talk about it with him and ask him questions even if he doesn't answer us back. WE excitedly get into his book bag EVERY DAY to see what is in there. I want him to succeed and want him to have the best possible chance to do that. But just tell me the address so I know if I am busing my child 45 minutes in rush hour traffic that may or may not turn into 2 hours.

I am not going to stalk and steal a baby with issues. I have one of those. I just want him to go to school and be in the right place for him.

I have felt dumber by talking to some of these people!

So, what we have learned. Ty will be attending the elementary just down the street. They just built it and it is brand new. Miss Holly is the teacher there. ( I dragged it out of the guy when he realized that I knew what we needed etc) The blind school may still be an option but we are going to be looking at if he gets 4 days and how much speech. Speech is HUGE!!

Other conversations have been about health care that I will leave to YET another post!

Moral of the story... Don't ask questions about your child's education. They might think you are a stalker!

A Sad Good bye.....

This has been quite a week and I realized that I haven't blogged any of it. Sorry "avid" reader(s) (aka Tammy, mom and Nicky!!)

Friday we ( me and Tyler's "team" of special educators) sat down and made goals for Tyler and his first year of preschool. This was a such a HUGE day for me. It made me realize that we were no longer in the birth to three ( aka early intervention) program. That we had gotten a step closer to growing up and becoming the "big boy" that he is. The Independence is going to be great for him and hopefully will be a positive step for Tyler ( and for mom.)

Monday was the last day for Tyler's first "school." It was a bitter sweet moment and provided me with some much needed closure to move on to the next step.

In Utah we have a program called PIP. It is a program run by the deaf and blind school. We had a wonderful therapist named Aften, who we think of often and LOVED her, and she would come and visit and work at getting Tyler's eyes working to the best of their ability.

When we moved I was so sad to leave her in Utah but she didn't want to move with us. I contacted all I could find about a PIP program here and found a wonderful infant program. They had a "school" on Mondays and a parent support group. I had not found a "support group" here in the valley yet and was so thankful that I had this group.

Over the past year and a half we have had a therapist come to our home once a week and she has been fabulous as well. Her name is Martha and she has been such a wonderful person and has worked so hard at getting Tyler where he need to be. This was a hard break for us.

During the summer a lot of changes happened at the foundation and lots of things changed. It was nice to go and enjoy the music therapy and the play with other kids and then have the parent group. It was nice to see that we have outgrown some of the "kid" issues and have moved on to big boy stuff. We will miss all of our friends and can't wait to keep in touch with them!!

Here is our last Day at the foundation:
Tyler playing with the ball! I know.. Not Tyler to be throwing a ball!
Ty outside with Martha. Its not a great picture because I was trying to stay out of his sight and get some photos without mom and with Martha. Shortly after this photo he saw me and ended up in the parent meeting.



A special and sad Goodbye and thank you to Martha for all she has done. She is so supportive of everything we have done. She was a big part of Ty's team and she was such a huge assets to me as a mom. She had many good opinions and was always willing to help in any way possible.

Ty's last "session" with Martha on Tuesday




All in all it was a wonderful program and hope that the current FBC goers are learning and feeling like we did. We LOVE the FBC and are so glad to have gotten the chance to be a part of the infant program. We look forward to the next three years and getting through the preschool program and getting the information we can from you..

Good bye infant program! Hello Preschool!

Pictures of Tyler!

The top ones are of Ty in music class. He LOVES it. He is always so HAPPY!! The bottom ones are of him at the playground at the foundation for blind children. He plays outside instead of doing the crafts. It makes us dirty but not as dirty as the crafts!!

Some Funnies!!

I have heard that you either laugh at your situation or you would spend the whole time crying. Life isn't fair and it isn't but we can have lots of laughs.

So, with that please don't think I am being insensitive.

Yesterday we were cleaning out the garage. I had not been able to find Tyler Glasses for like 2 weeks. So I was looking in the Jeep. I found Ty's valentine for Dallas in there and his glasses. ( I digress here for a second. Each week at the foundation for blind kids we do a craft. Usually it involves paint or glue or both.. well that week was no exception. We usually show Dallas. He tells Ty good job and then he throws it away) So this week we give the Valentine to Dallas and he looks at it. He gets this look on his face and our conversation goes like this:

D: Gee, thanks. What is it?
Me: A valentines that Ty made at the blind school.
D: It's not that good. It's kinda weird looking.
Me: what do you expect honey.. it made by blind kids!!


Here is the valentine's that the "blind kid" Tyler made. It had Candy on it but he tore it off and ate it. What a cool kid!!

The Phrase a "new normal"

For all those who read ( or stalk) this blog I am sure they are sick and tired of me telling of our plight with our Little dude. Well, I am going to explain a few things that I have really thought a lot about.

I have never had any other child ( other than Tyler) in my whole life ( duh!!) so there are somethings I never got to experience. Although I have watched from afar and seen and helped in many situation it was never first hand information. When I had Tyler I knew I was "missing" things. I did experience labor. 2 days worth to be exact. I never once pushed to get him out. I did breastfeed but not once did I do it WITH Tyler but always with a pump. I pumped religiously and never got out more than 2 ounces at a time. I was on every milk increasing drug and herbal remedy known to man ( and smelled like syrup for months) but never got to experience "that." I didn't take a baby home with me. I didn't get a fat baby. I didn't get a big belly, I didn't get to complain about being pregnant ( a HUGE pet peeve of mine so don't do it if you don't want to hear a LARGE piece of my mind) The list of didn't get to do's goes on. I know I was jipped. I know I was ripped off if you will.

When we came home I was under the impression we would be Normal. That we would be just fine and he would grow and be a normal kid. BOY was I wrong. We had 3 Doc appointments a week. Then it went to weekly weight checks. We had therapy, specialists and then of course when we were settling into the routine of these appointment to what I Thought was my " new normal" something would happen. We had surgery, then surgery again, then screaming for a month and then surgery again. There was no calls from "friends", sisters or anything to go out and do normal things because we weren't " normal." All I knew was what we were doing.

Fast forward to year number one. After his birthday we sailed pretty uneventful until Feb of this year. Due to RSV season LAST year we were still stuck inside. I was in a basement apartment that had a window, with little light and was small and cramped and yet I was supported by Dallas and no one thought twice about us being stuck there ALL the time. I am sure people thought we were paranoid about germs and what not but it was very lonely. We still has weekly appointments for his weight and I looked forward to talking to his nurse on the phone. So we saw a "new normal."

After his last surgery, I had a major break down in the hospital and had to have someone come and stay with Tyler one night and actually it was more of a morning. I had a migraine, he wasn't sleeping, I was sick to my stomach and I had to get out of that room. Off that floor.. gone.. somewhere else! D's mom came up and took him and then D went up the next day and luckily we were released because I couldn't handle that place for one more day. The new normal there was lonely. VERY lonely. No one called, no one visited, no one stopped by other than Brooke and Steph which was so much more appreciated than life.. but I saw Nicky so I could get food. I never felt very supported through the trials we had.

We moved in February. It was less than one month post op with a total skull reconstruction. Ty had and has nightmares after every hospital stay. He had no house while we were moving. It was hard. Now we have settled into a routine and we have a new normal... but do we.

Our week consists of Foundation for blind children, OT, PT and a eye therapist. So 4 days a week we have some person in our home for Tyler. We will be adding Speech when I find one and possibly getting out of home therapy for a while. So add that to my list!! We see a specialist for his shunt every few months, we have a eye specialist that we see right now every month, a pediatrician and now adding a neurologist and and Orthotic speacilist. I work 34 hours a week and Dallas works. We have no person to pawn our amazing child off to and we support ourselves. We don't have any government support and we haven't been approved for long term care as of yet. So we are left high and dry. We are left with a new normal.

*******disclaimer in here******** I am not complaining that we don't have family around. We chose to move and we have and are having a the time of our life and have made a wonderful life for our self.**********

So.. a new normal.. Yes.. there is something that you get use to. But in order to be realistic about what you face you have to realize that for every new season there is a change. A change that causes a whirlwind of emotions. Ones that are lonely, frustrated, scared and alone. And also ones of renewed enthusiasm about what is to come. Support needs to be there for all of these changes. But realize that what you are experiencing NOW is not always going to be your normal. For each missed milestone or reached milestone is a new normal. It will never be the same again.


I have accepted this as my life. I have accepted that this is how things are for us. I know that I am doing the best I can. It doesn't take away from others not knowing, others who are cruel and others who, if they would only TRY and see it from the other side may feel the love that we do for Tyler.

So ... This is our new normal

*** stay tuned for more on Tyler and his castings at the Ortho today... ****