Friday, October 31, 2008

The real deal

I don't remember Halloween being such a big deal when I was little or lasting for so long. My kids always get so much use out of their costumes during the month of October with all of the pre-Halloween festivities that the costumes usually look quite used by the time Halloween actually rolls around. I do remember trick or treating when I was little and all of us emptying out our pillow cases when we got home to see who got the best and most items (and always looking for that hidden razor blade inside the apple), but I don't really remember any of my costumes. Guess I'll have to dig through my mom's pictures to help stir up some memories.

We just got in from a beautiful (warm, with a little wind and rain) evening of trick or treating. We started the night with a neighborhood get together/dinner at the Wilko's house. Which is always a great time with all the families.

The hosts of the neighborhood get together--looking GOOD!!

Apparently trick or treating is a learned behavior which we forgot to teach or explain to Griffin. We went up to the first house with Morgan and Griffin and when the lady came to the door Griffin managed to squeeze by her and walked right inside her house and headed towards the kitchen. Meanwhile Morgan was acting like she was taking the sacrament at church (she always grabs a handful of bread) and grabbed handfuls of candy and stuck it in her bag. Griffin got the gist of it after a few houses! Jack and Ryan went on their own with their friends and then Jack ended the night at a friend's house for a Halloween party (makes him seem so old!)

Our first house--she has no idea what Griffin has planned!

Ryan with his friends out trick or treating

Trunk or Treat

We started the Trunk or Treat with a chili cook off

I am not sure what I am dressed up as...some old lady with great hair!

But Gavin's and Jack's hair is even better!

Ryan and Hadley hanging out in the trunk

Morgan LOVED the trunk or treating

Halloween parade

There was no school on Halloween so the school Halloween parade was yesterday. This is one of the disadvantages of having Morgan at a different elementary school than the other kids. Both of the parades were at the same time so I wasn't able to attend both of them and missed my cute kitty cat in the parade!

Griffin participated in the preschool portion of the parade

Hadley with her fun 2nd grade teacher--a flower hippie

Ryan with all of his hippie buddies and one joker

Jack loved all the facial piercings--maybe a little too much!

Wednesday, October 29, 2008

Seal family pumpkin carving

The Seal gang-- Griffin had better things to do than pose for pictures!
We had our annual pumpkin carving party for the Seal family at Chad and Jill's house this past Sunday. This event has been a family favorite for many years . . . it goes way back to my dating days with Gavin. The best part of the activity for all the boys, or um ... the dads, always seems to be the pumpkin seed fights. It got so bad over the years that Lolly finally started to have us carve our pumpkins outside in the cold in an attempt to save her carpet and walls from pumpkin seed splatters. Jack was commenting last week how he misses having the pumpkin carving contest at nan and papa's house now that they've moved. Luckily Jill is very brave and has been kind enough to host this party the past few years.
Jack- guitar hero guy; Ryan-hippie

Hadley is a cheerleader this year but not one from the UofU because obviously she is a BYU fan. I've at least done a few things right with raising her. So this is her 'in-between' costume. She has a different cheerleading costume for the actual trick-or-treating event!

Morgan makes such a cute little kitty cat. Her favorite part of the costume is the tail and her least favorite part are the ears (she doesn't like things on her head).

And this little monster is a skeleton

Jack and Gavin take their pumpkin carving duties very seriously!

And our sweet little Mia is Minnie Mouse

Sunday, October 26, 2008

A little too intense

Maybe it's just me, but we all realize it's just little league football, right? I think there is something wrong when as a mom I have to fight back tears while watching my son play in a little league game. I know that I cry easily (I blame that on Morgan-- for some reason I became a more sensitive, emotional person after her birth). But this game was really hard for me to watch. Ryan's team was playing their last regular season game and it was against their toughest competition - an undefeated Bingham team. Ryan always plays the entire game and is a vital part of the team, which can be good and bad. The first few plays were passes to Ryan where there was pass interference, no flag and no catch by Ryan. Then they tried a reverse to Ryan. He took about 3 running steps and slid on the grass. In the second quarter they tried a pass to Ryan again. He caught it and then lost it. So this was the scene at half time. All the boys ran off the field and Ryan was met by two coaches out on the field while they talked to him about what was going on.
There were lots of tears on these boys faces during this game and I don't think very many of them were from injuries. Maybe this mom just needs to toughen up!

Toddler For Sale

This is Griffin's latest naughty 'terrible two's' act. He seriously does this EVERY time he is put down for a nap. It's not always to this extreme but he always takes off all of his clothes and diaper, strips down his bed, and pees everywhere. This time he decided to add a little extra fun to the activity and finger paint all over his walls with some sort of stinky brown paint. He managed to do this with 3 safety pins on his shirt, pants and diaper. He has great fine motor skills and we couldn't be prouder!

Baby's 1st Halloween

Being the sixth child in the family means a lot of hand-me-downs--Halloween costumes included. With Halloween nearing I have been trying to finalize the costumes for all the kids. Mia had the choice of Minnie Mouse, pumpkin or a bumblebee (not such big fans of the bumblebee anymore since our latest bee attack). But yesterday Mia decided she didn't want any of those old hand-me-downs and would rather be a spotted bug. Let me explain. She got her first episode of croup last week (croup is nothing new to our family -- we definitely live up to the 'Seal bark' blog name in this house!) and continued to sound pretty rattly throughout the week so I took her to the doctor's last week. Her lungs sounded fine but she did have bilateral ear infections and needed antibiotics (her first time taking those). So we started her on Amoxicillin. Well she went from being a happy baby with a gunky cough to a whiny and grumpy (for her anyway) baby on antibiotics. After 8 days of being on the medicine and not acting any better, yesterday she woke up with a rash all over her body. I took her back into the pediatrician's office and her ears didn't look any better, she has bronchitis and she is either allergic to penicillin or experiencing the "Amoxicillin rash". So she is now on a new antibiotic and even more covered in the rash today. Here's to hoping she won't still be a spotted bug come Halloween!

Friday, October 24, 2008

Things people say

We took our oldest boy out of school this afternoon to go out to lunch with us. He chose a family favorite--Training Table. Dining out is always really crazy with the 3 youngest children. How do you get 3 high chairs around a booth table? You can't! So we sit down and begin the chaos. All under the watchful eye of the older man that is our busboy. He literally stands right next to our booth and watches and talks to us through the whole disaster--uh--meal. He watches as Morgan throws cups and crayons across the table, Griffin trying to crawl all over the table and grabbing the phone (used to place an order), Gavin & I trying to at least have some sort of conversation with Jack--since that was the whole purpose of this lunch date. He then asks Gavin what's wrong with Morgan. Gavin tells him she has Down syndrome. He looks a little confused so Gavin explains that it is a chromosome anomaly that occurred way before she was born. He then asks if she will ever out grow it. After he learns that she won't, he repeatedly said, "Oh I am so sorry. That is so sad." Jack asked why that man kept saying it is sad to have Down syndrome. We told the man that it really isn't sad but he kept saying, "oh I'm so sorry". So I finally said, "'s okay!!" Hoping he would finally leave it alone. His approach was not offensive (maybe his reaction was a little offensive to me) but it was obvious he wasn't the brightest man and was just curious about Morgan. He decided to interact with Morgan and brought her a pile of napkins. She looked at him, told him thank you, and started to wipe her mouth with the napkins. He commented that she was actually a very smart little girl. Usually this would make me smile, but this time it didn't because I know that Morgan is smart -- not because she recognizes what a napkin is and it's proper use but because she really is a smart girl! I wish Morgan was able to control her behaviors better so people could really see all that she is! As we were getting ready to leave he asked us if something was wrong with Griffin too. Gavin immediately said, "Yes. . . he has osteoporosis." :) Oh, I couldn't stop laughing! I love my husband and his quick witted remarks!

Here's a great blog entry to read that discusses all the 'thoughtless, insensitive and sometimes, the downright rude comment or question' we have all heard as a parent of a child with a disability.

Thursday, October 23, 2008

Welcome to Holland

I know I have not done very well with the challenge of blogging everyday to help raise Down syndrome awareness. My life is so busy with my six young children. I wanted to post a poem that I read a few years before Morgan's birth. My neighbor had it hanging on her wall. She was a young mom with two beautiful daughters, both of whom were deaf. She told me how much the poem meant to her. I read it and remember thinking how perfect the poem fit her children and her situation. Over the next few years I forgot about the poem. Then Morgan was born. While she was still in the NICU I was given a yellow folder with all kinds of information about Down syndrome. The poem was in the packet of information. I read it again and realized how perfectly the poem now fit my life and situation. The author has a son with Down syndrome.

WELCOME TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Tuesday, October 14, 2008

Acceptance and Respect

Here's a great article for Down syndrome awareness month.

Kristin Pass, 18, center, was named homecoming queen Friday night at her Texas high school, beating two other finalists for the crown. Pass was born with Down syndrome.

Friday, October 10, 2008

Forget something?

Have you ever started a book and then a few months later remembered that you were in the middle of it and never finished it. Me too. But did it happen when you were reading this book?

Wednesday, October 8, 2008

Angels among us

Oh I Believe there are angels among us,
sent down to us from somewhere above.
They come to you and me in our darkest hour,
to show us how to live, to teach us how to give,
to guide us with a light of love.

Monday, October 6, 2008

Morgan's birth story

Morgan's birth was very unique and special. I was sent home from the hospital in the middle of the night because they claimed I was in 'false labor'. I wasn't progressing past a 4. I repeatedly told the resident and nurse that this had happened in my other pregnancies too but once I started progressing it seemed to go quickly. They chose to not listen to me (what did I know? It was only my 4th baby) and sent me home with a sleeping pill and Tylenol #3.
I got into the bathtub to help with the labor pain. Gavin was asleep in the bedroom. After about an hour, the sleeping pill had worn off and the pain was getting to be too much. I yelled out to Gavin and woke him up. Gavin called the hospital and spoke to the nurse that had sent us home. She was kind enough to tell me that I was more than welcome to come back in to get checked and see if I had progressed. The hospital was 20 minutes away. I had another contraction and told Gavin I couldn't go to that hospital -- there wasn't enough time--and that we would go to a closer hospital (even if it wasn't covered by my insurance). I started to stand up to get out of the bathtub and get dressed but had another contraction and realized I wasn't going anywhere. I told Gavin to call 911. The dispatcher had Gavin get a shoe lace to use for the baby's cord after she was born. She was born very quickly delivered into the loving hands of her daddy. It was a peaceful, calm situation. I know that angels were present as Morgan entered this world. We were so excited to find out that Morgan was a girl (we wanted it to be a surprise and chose to not find out in her ultrasounds) -- a little sister and friend for Hadley--only 18 months apart. I noticed right away that she didn't have good tone and started to do sternal rubs to try to 'wake her up' from the sleeping pill the nurse had given me.
The paramedics arrived and took us both to the hospital. I was still in a lot of pain since I couldn't deliver the placenta until I got to the hospital. The paramedics asked me if I wanted to try to nurse her but I couldn't focus on anything through all the pain. We got to the hospital and they took Morgan to get her warm and do her assessment. She was considered a 'dirty baby' because she was born out of the hospital. Pretty funny since she was actually my cleanest baby -- born in the bathtub and all! Gavin made several comments about her not looking like any of our other kids. I thought she was just really swollen since her features weren't as defined as my other children and I needed some time to see who I thought she looked like. They let me nurse her for a few minutes and then took her away. We went to our room and they told us they would call our room when they were ready for Gavin to come down and give her a bath (another one?). We woke up every few hours and called our nurse asking if we could come see her yet. "She is still not warm enough. She is having a hard time keeping up her body temperature. We'll call you when she is ready." They kept this routine going until the on-call pediatrician came in to see us that morning. He had a questionnaire he was going through--health history of siblings, etc. He then said, "I heard one of you commented in the delivery room that she didn't look like your other children." I seriously was clueless what he was implying. I thought he was accusing me of having an affair. Gavin knew right away that something was wrong with Morgan and asked him where he was going with all of these questions. That is when he told us that Morgan had some characteristics that were common in Down syndrome. I immediately starting crying hysterically. I couldn't believe what I was hearing. I had just turned 31 and hadn't even thought about something being wrong. I had worried about it with Jack but after having 3 healthy babies I didn't think anything like this would ever happen to me. The pediatrician told us that she was not breathing very well and they didn't know if it was related to a heart condition (50% of children with Down syndrome have a congenital heart defect) or possible sepsis from the home birth, but that they needed to transfer her to PCMC for better and more thorough care. We went down to see her in the nursery. She had an oxygen helmet on and it was obvious that she had Down syndrome. It was hard to look around the nursery and see all the other healthy babies in there with the 'typical' newborn look and breathing just fine. I had taken for granted that my other three children had been born healthy. I just assumed that was the norm. I left the hospital and went up to the children's hospital and spent the day up there with Morgan in the NICU. I had to return to my hospital that night to make sure I was healing okay and then they would discharge me in the morning. I got back to my room and there was a brochure on the table for me. A pamphlet about the UDSF (Utah Down Syndrome Foundation) with pictures of children with Down syndrome. I looked through the pamphlet and cried. How could this be my baby? I heard newborn babies crying in the rooms next to me and held my empty stomach, crying and wondered how everything had been just fine 24 hours earlier. I wasn't able to have my baby in my room with me. I wasn't able to nurse her when she cried. Instead I was pumping trying to get my milk in, hopeful that she would be able to nurse despite all the information that contradicted that hope. Gavin and I met with the cardiologists who were our Down syndrome information source. We found out that she had an AV canal in her heart that would need to be repaired when she was around six months old. They also let us know all of our options -- we didn't need to keep her if we felt like this was something we couldn't handle. There were couples waiting to adopt babies with Down syndrome. Divorce rates are higher when the family has a baby with special needs. Most couples feel like it will bring them closer but the stress actually tears them apart. I'm not sure what else was said. I was pretty numb to it all by then. But I did know that this was my baby girl and I absolutely loved her! I spent as much time as I could in the NICU because being around her gave me the peace that I needed. Her little spirit let me know that everything was going to be okay. And she was right! My life had just gone from ordinary to extra-ordinary!

Morgan's Poem
So small she lay there in your arms
With heaven still in her eyes.
You truly are the blessed ones
For she is a special prize.
Your Father took His extra care
and gave a piece of His heart.
In creating your little girl,
He created a work of art.
He sent this child to you,
not by luck or chance.
God knew you were the perfect ones
worthy to have her first glance.
You see your little girl, Morgan
brings with her a special light.
That will touch all those around her
And raise them to a new height.
She has something special
that she brought with her to earth.
For there were heavenly angels
that stayed with her through her birth.
Morgan has been given a gift
that she will share with us all.
She carries with her the Savior
in her spirit strong and tall.
All those that are blessed to know her
will come away the better.
Feeling the Savior's spirit
Just because they met her.
An eternal gift to treasure
Morgan's piece of priceless worth.
We truly are the blessed ones,
For she is heaven on earth.
(Written by my sweet friend, Tiffany Wilko)

Sunday, October 5, 2008

Dress up

Morgan and Griffin LOVE getting into the 'snow clothes' closet and playing dress up. They are going to have so much fun when it actually snows and they can put the clothing to good use but for now a good mix of Halloween costumes and snow clothes will have to do.

And the cute face behind the mask

She's on the move

Mia has been scooting backwards for a few weeks and is now able to move forward a little bit. She is no longer content to just sit and is always in the crawling position now.

Starting position

And she's off!

And really can a flower ever be too big?

Friday, October 3, 2008

The unknown journey

I just got a phone call from my best friend. Her sister-in-law and brother-in-law have a brand new baby boy with some characteristics of Down syndrome. The couple is adamant that the doctor is wrong and still hoping the chromosome results will show everything as 'normal'. I spoke with my friend for awhile and explained the grieving process that I went through when Morgan was born. It is really hard for me to relive those early emotions. Even though I am at peace with the gift that Morgan is in my life, it makes me hurt to know others are going through the same hurt and pain. I just wish there was someway to help speed up the process and help them realize the gift they have been given. But it is a journey that they have to reach on their own. If they could only get a glimpse of the future and see that everything is going to be just fine!

Wednesday, October 1, 2008

Happy October!

October is Down Syndrome Awareness Month and a blogger has sent out a challenge to blog everyday for the month of October -- 31 days to raise awareness of Down syndrome (a.k.a. Trisomy 21). Get it? 31 for 21!? I did not know a lot about Down syndrome before Morgan was born. I knew the chromosome make up of Trisomy 21 from my high school and college Genetics classes but that was about it. I remember asking the pediatrician right after I had gotten 'the news' if Morgan would even know that I was her mom? Would she ever talk or walk? He looked at me like I was crazy and asked me if I had ever known anyone with Down syndrome. He reassured me that Morgan would do EVERYTHING my other children do but just at a slower rate. I am so grateful for the positive attitude of this pediatrician and letting me know right from the start that everything was going to be just fine!

I don't know if I can promise to blog everyday but at least I will try to blog a little more about Down syndrome and raise awareness for others. I am also hoping to visit my children's classrooms this month to discuss disabilities, Down syndrome, the "R" word and acceptance.

I LOVE this picture of Morgan (9 mos. old) and Gavin!


The photographer called yesterday. Apparently she wasn't able to get a good family picture of all of us together. Which really did not come as a big surprise to me! We were only able to take a few pictures before the bee attack and I couldn't remember one where Morgan was even looking at the camera. So I guess we will reschedule and try it all over again, but hopefully without the bees this time and not up in the mountains. She did post a few pictures on her blog that I LOVED of Hadley and Mia but I haven't seen any of the others yet.

So for now --enjoy our family picture from 4 years ago.