Slow down..

So things have been pretty crazy lately. Matt was gone for 5 days last week, so it was just the kids and I . WE MADE IT w/out him just fine!!! The boys and I missed him, but Megan as long as she has her mom she is happy :)...
We have been getting ready for Megan's dance recital, and have been practicing with the wig & wearing it to dance practice to see if it will stay on for the whole dance. It would break my heart if it fell off right in the middle in front of all the people! Seems like her Grandma is the only one who can get it to stay on with the tape, and then Megan is getting really good with pulling it down herself when it starts to ride up. I am really proud of her! She loves to keep it on for dance, and it is so amazing how different she acts when she has it on. I don't know if she acts more girly or what but there is definately something different. You gotta love her though b/c as soon as dance is overwith and she is home she rips it off tape or not! She is totally fine with it off and her mom is getting better too! We have another spot in the back right in the middle of the hair that she has left but we don't notice it quit as much as we used to, I think we know that we are not done losing it but it is getting a little easier..
So I have been trying to walk at night, and if Megan catches me trying to leave she will wait out in the driveway so I cannot leave without her. Usually I make her go inside b/c you cannot speed walk when you have a 5 year old with you!! Last night I saw how upset she was b/c she just wanted to be with her mom so I caved and let her come with me. We were walking by Midland College and the cops had some girl pulled over and had her doing a sobriety test - well we were pretty close to it (close enough that the cops waved at her) anyway we walk by and Megan as loud as can be says "look someone is getting busted"!!!! Oh it was so funny!!! She has the sarcastic sense of humor that is soo funny she makes me smile all the time..
So ANYWAY I did have a moral to my story - and it is that I need to slow down - when I get home I am always going 100 miles an hour. I put things off for another day, make kids stay home when all they want is to be with us. We have to be greatful for the time we have with them as kids, everyday is a gift! I had a best friend in school and after we graduated everytime we would see each other it was like no time had ever passed we would be as close as ever. That was the thing, we always thought we would have another day, another time to hang out. Have another time to tell each other how much we cared. She and her husband were killed in a car accident. I am very greatful that I had someone who I was so close with, but I regret everyday how we grew apart how we always thought there was more time.. So I am adding a poem that I have read a hundred times and each time it really hits home. It makes me want to spend more time with my kids , and tell my friends how much they mean to me..
This poem was written by a teenager with terminal cancer, it was published by her doctor.

Slow Dance

Have you ever watched kids

On the merry-go-round?

Or listened to the rain

Slapping the ground?

Ever followed a butterflys erratic flight?

Or gazed at the sun into the fading night?

You better slow down.

Don't dance so fast.

Time is short

The music won't last..

Do you run through each day on the fly?

When you ask how you are?

Do you hear their reply?

When the day is done

Do you lie in your bed

With the next hundred chores

Running through your head?

You better slow down

Don't dance so fast.

Time is short

The music won't last..

Ever told your child,

We'll do it tomorrow

And in your haste,

Not see his sorrow?

Ever lost touch,

Let a good friendship die

Cuz you never had time

to call and say "Hi".

You beter slow down

Don't dance so fast.

Time is short

The music won't last..

When you run so fast to get somewhere

You miss half the fun of getting there.

When you worry and hurry through your day,

It is like an unopened gift

Thrown away.

Life is not a race.

Do take it slower

Hear the music

Before the song is over.....

Love,Liz

New Baby Cousin

Monday night the kids and I went and visited their new baby cousin in the hospital. They are not real interested in him at this point, although Ryan is excited it is a boy! Megan is never real happy when her mom is holding another baby, she is 5 but I think she gets a little protective cuz she is my baby. I just want to say congratulations Nick & Cara on having such a beautiful little guy!! Jaxson Hunter Morris - 7 lbs 7 ounces, born Monday March 23rd.

"she isn't sick Mom"...

Last Monday my mom and I took Megan to our first Alopecia support group meeting in Omaha. We really went with no expectations, we just knew no one personally that had Alopecia Areata and thought this would be a great chance to meet some people and talk and if anything get some more information. I also really really wanted to let Megan meet other little girls that had Alopecia. I had talked with the lady thru e-mail that runs the Omaha meeting and she had mentioned a couple other girls in the group that were 7.

Well, we got there and at first were a little let down that there were only 4 other people there. Once we started talking I was so happy we went. It was kind of a family, everyone knew everyone. There were no girls there that night but one of the little girl's father was there , and she has about the same amount of hair as Meggy so it was nice talking with him. I even talked with a lady that initially went to the same dermatologist as Megan's first appointment and had the same horrible experience as we had. Well within three days after the meeting, Ross the guy that lead the meeting that night had e-mailed me 3 moms names that have little girls all around Megan's age, and had contacted The National Alopecia Areata Foundation and had them send me some information and a GREAT video. The video is kind of set up for a child's classroom and it is called "Why does my hair fall out". It is 9 minutes long and will be a great tool for us to use and take to Megan's classrooms when she is in school. We sat down and watched it Sunday night after we had our evening bath (since they were really really dirty from playing outside all day :) ) - Megan sat on my lap and my oldest Ryan watched it also. He really seemed really really interested in it. I know I am cheesy but I silently cried the first 3 min of the DVD!!! We have lost alot more hair this week and I must have been releasing some emotions I guess???

So over the weekend I had taken Ryan and Tyler shopping with a friend and her son who is close to the same age. Megan stayed in Fremont that night and had a date with her daddy. The whole purpose for shopping was to get Megan an outfit for her soon to be photo session and maybe get the kids some spring clothes. Well my little "cool" kid Ryan went into Gap kids and wanted everything. Which I did buy the boys some stuff (couldn't resist), and then I told Ryan that we came shopping to find Megan an outfit so I wasn't gonna get him anything else (which I did...) and he whined and made the comment "why is everything always about sissy anymore". I knew that he was being a typical 7 year old that was not getting his way BUT I could also see where he was coming from. So then on Sunday we had watched the program and I had noticed Ryan staying in the room for it. Later when I took Ryan to bed and we did our - snug as a bug routine I told him that I was sorry we had been wrapped up in Megan lately and I would try and be more aware. He looked at me and he said " she isn't sick Mom she just has Alopecia Areata, so it's okay"!!! I was sooo proud of him for saying that I am surprised I didn't cry. That was exactly what that DVD had taught them, that these kids were not sick that they just had Alopecia and should be treated like any other kid!!! If the one kid that is annoyed by Megan the most can learn that watching the DVD then hopefully all the other kids that Megan goes to school with will as well!!

T-bone

So as much as I try and give all of my kids the same attention and love them all the same, I think I have been focusing so much on making sure that Megan is happy and comfortable with herself that I forget that there is this sweet little boy that has to come along for the ride!

Ryan my oldest gets one on one time with me a couple times a week after school and we have kind of a best friend relationship. He is also at that stage where as long as he has his Wii or grandpa's computer is a happy camper. Well then there is Tyler or T-bone as we call him. He is Megan's twin brother, he has always been my child who is content with everything & happy to go along with what the other 2 kids want to do. He is also happy to sit with a box of legos by himself for hours. Not to mention that he is the only one of my children that remotely looks like his mommy!! Of course he will have those morning where he is a little dramatic and need us to turn off the lamp or give him his sunglasses so we don't BBQ his eyes, but for the most part he is usually happy.

The last few months we have been so wrapped up in Megan and getting a wig, making sure she doesn't get bullied or picked on in school, making sure she knows how beautiful she is. In all of this I failed to see that maybe her twin brother was feeling a little left out. Tyler has always got along with everyone, well in the last month he has been coming home saying that he is getting picked on in preschool. He will cry that they are bullying him and he doesn't want to go back. I had been worrying that this will happen to Megan I didn't worry about my poor T-bone. At first I was so annoyed with school, but maybe I should do more too!! Maybe my husband or I should start giving Tyler a little one on one attention. Usually if Matt takes a boy, Ryan will have Tyler say he wants Ryan there too (he usually does want him) and then I will have Megan by myself. Tyler usually never gets his own time. He has even started acting up at other times. Tyler has always been my best shopper, cuz he is just so darn good.. My mom took Tyler and Megan shopping after preschool the other day and he would sit in the middle of the aisle . She said he was just such a little bugger.. Then you ask him about and say he hurt Grandma's feelings, he says "She didn't give me time to say I'm sorry" in such a sweet voice - it is just so hard to stay mad at that!!!

So, I had a talk with the school and we are gonna watch it. I have told myself I am gonna give more time into giving T-bone more one on one attention. A couple times Tyler went to school w/out Megan because I had appointments and things with her. They have their own friends but most of the time they stick together. Maybe I need to take a morning off and just hang out with him. I don't know, I just think maybe giving him a little more attention will help the problems that he has been having! I guess for T's sake it's worth a try!!

Little Heroes

So I found a couple really good sights for information for families with children with AA. They are Children's Alopecia Project. - http://www.childrensalopeciaproject.org/ & National Alopecia Areata Foundation- http://www.naaf.org/ . They have some really great links and information. The National Alopecia Areata Foundation even provides a schoolpack that we can print out and give to Megan's Kindergartin teacher next year. Which has information for the parents and teachers on how to promote awareness and educate the other students that Megan will be in class with and also areas that they can promote self esteem within her. It is also very educating for moms and dads as well. Anyway on to the good news, when I was checking out these sights the other day I came across a link for a sight called Little Heroes Project, it is a non-profit based organization made up of professional photographers nationwide that provide free photo sessions to children who suffers from any type of serious illness or life altering disability. Not really thinking about I filled out an application for Miss Megan. Well not even two days after that I received an e-mail stating that she had been accepted for a Little Heroes photo shoot. They had a whole list of participating photographers in Nebraska, so we e-mailed back with the 3 that were the closest to us. So this was some great news after the week we had last week. Looks like they will even shoot her with her siblings, so the boys can be part of this! If you have time you should really check out the sight, they have some great stories on there and feature different kids every week. http://www.littlestheroesproject.org/ . Read the story about the founder it is heartwarming and very awesome because she is only 17 and started her life out with a medical issues as well.

The beginning story

My daughter was diagnosed with Alopecia Areata when she was probably 2 1/2. When she first started getting "spots" as we called them back them she proabably had 2 or 3 that progressively got a little bigger. Eventually they grew back on their own, until after that anytime she would get any sort of illness she would lose some hair. So we took her to pediatrican and they really did not know what to do with us. I basically had to beg to have any sort of tests done and eventually found out she has a elevated thyroid (which has nothing to do with her Alopecia). They finally just gave us a $80 foam and sent us into the local dermatologist. By the time we got in there they took one look at us and said "oh she is too severe for us to look at" made us an appointment in Omaha and that was that. It was a horrible experience - we waited a hour and 1/2 and he talked to us for 5 min. He told us that since she had just had spots she would grow out of it and it was just the "luck of the draw" that she had it!! That we had to use the Cortizone Oil EVERYDAY.. So her hair at that point started growing back a little, and the oil would thin her skin and she would have little sores. Me being a mom hated that - so I would stop using it for a little bit and she would get a cold or something and she would get another spot and it would be bigger. So then I would feel as if it were my fault and I could do more for her. That me not following Dr.s orders somehow caused it. So we acually switched pediatricians and this DR. checked her thyroid again and then sent us to Children's Hospital in Omaha for blood tests to see if maybe she was allergic to something, and also sent us to a Pediatric Dermatoligist affiliated with Children's just this last May. It was a tough appointment but a good one also. Dr. Jill Nelson, she was very good with kids but she basically told it like it was. She told us that it was not our fault that the oil was not proven to do anything, and why put a 4 year old through that if we didn't have to. She did warn us that Megan could possible lose all of her hair and eyebrows as well. Up to that point no one had really told us anything. The other Dr. told us that she would grow out of it and now we know that she possible probably won't. She also said the only thing really proven to help at all was the injections, and that she wouldn't do that to a child until they were old enough to understand it and ask for it themselves. She just said make her as comfortable with herself as you can teach her what she has, so when a mean child (which we know are out there) says "whats wrong with you" she can say I have Alopecia whats wrong with you !!! So, at that time she had maybe 3 spots that were maybe golf ball size, and then in November she started losing more and since Christmas she has lost nearly 80% of her hair.We did get her a wig this last month but she has only worn it a couple times. It is just there is she wants it, I don't want to push her. We wanted to wait until she asked for something, but we will catch her looking at herself in the full length mirror at dance . She has also asked her Grandma if her hair will ever grow back.... At this point we are just beginning our jouney without hair. We are trying to get in a support group in Omaha that way Megan can be with other little girls that are going thru the samething. I have found a couple moms online that do not know it but have been so much help! I thought I was crazy because I have been an emotional wreck lately. So here goes I have never blogged before but I am hoping I can vent out my fears and frustration on here and not at home .

Rough week..

Sunday night we were taking our bath and I washed what is left of Meggy's hair - and YES I use Nioxin. I know that it is probably pointless but we use it anyway. Megan likes the way it smells and likes that she has her own shampoo that the boys don't use. Anyway, I noticed when we were drying off that she has 2 news spots on the side that still has alittle hair left. You know I tell myself that this is gonna happen but when that much is gone in the little time that we were in the bath it breaks my heart! I am just down this week, I am happy when my kids are with me, but in private I am just down.. It's got to get easier - RIGHT??
At Megan's age it is harder on the mommys! We want to shield our children from any pain and saddness. I want to shield her from the looks that she gets in the stores from the ladies that come up to us and say "whats wrong with her". You just feel helpless b/c you want to make it stop and you can't it is not in your hands. I have been talking to another mommy who's daughter started losing her hair about the same age as Megan was. She is now 7 and has lost all of the hair on her head as well as her eyebrows. She is such a beautiful little girl and has such a great outlook on her condition. She said that in the beginning when it starts to get bad it is a mourning process . I know exactly what she means , I am mourning the hair that was once there. Mourning the possiblilities that my daughter might never have. Getting her hair done for prom, having girl's night sitting around doing hair and make-overs. Its the little things that I want for her and it is not fair! There is nothing we can do to make it go away, except tell them how beautiful they are and how much we love them. Be greatful for what we do have. She is here and otherwise a very healthy happy little girl who picks on her brothers ALOT!!