Adele's Journey!! :)

Adele's Journey -- Click here!!!

 

 

I'm slipping......but coming back :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 20 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 

 

 

 

:)

Just a few pictures that make me smile....

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I'm slipping......but coming back :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 17 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 

 

 

 

Dear Adele....

Dear Adele,

On Thursday night after your feeding, you jumped :) into bed with mommy for some snuggles. As you were looking at me, your eyes started to twitch and move from side to side and your bottom lip was also twitching, almost like there was a string attached to your lip and somebody was pulling on it....so bizarre.
After you did this half a dozen times, mommy got into a bit of a panic and told daddy that something was wrong and we needed to do something right away. I was torn between calling 911 and Health Link. I know that there is a big difference between the two, I just didn't want to over-react. I sometimes think that I overanalyze, but I also know that as a mommy, you know when something just isn't quite right. It wasn't quite right.
Health Link advised us to take you to High River Emergency.
Not too much happened....your vitals were checked and you were monitored for a few hours.

Saturday, after a feeding, the same thing happened. Mommy called her best friend, who is a doctor, to get some advice. She told us to take you to ACH, as they will do a thorough examination and we would get some answers.

We were seen immediately and the tests started. The Respiratory Therapist came in to check your blood gasses, mommy was ok with a little heel poke. We thought that maybe that would be it for blood work. Nope. An IV was going to be started, a catheter inserted to get a urine sample and more blood needed to be drawn. Mommy had to leave the room. Daddy was a trooper.

I had to go to the end of the hall so that I couldn't hear your cries. It was breaking mommy's heart. It was so tough. I wanted to be the one getting poked and prodded. I wanted to take away your pain. Mommy returned to the room and you were very distraught. You were crying so hard. You were so upset. Mommy came over and I put my hand on your forehead, kissed you and told you how much I loved you. You stopped crying instantly and the tension from your body released. You calmed down. I cuddled you and reminded you over and over again that I loved you so much.

An EEG was preformed the following day and it came back all clear. Your blood work also showed no signs of seizure activity. There was a huge sigh of relief. Mommy and daddy were happy that the results were positive. The neurologist is going to follow and monitor your progress for the next while, just to make sure that you remain healthy and seizure free.

I am writing you this letter Adele, because sometimes mommy feels defeated. Sometimes mommy feels so helpless and useless. I worry about you Adele. I worry about your health. Mommy still questions at times, was it fair to bring you into this world, knowing that the journey would not always be easy.?? That there would be many obstacles and bumps along the way. You don't deserve it. It just isn't fair. There is no other way to put it, it just isn't fair. I wonder sometimes, was it for my own selfish reasons that I continued with the pregnancy? Mommy was far along in the pregnancy, almost halfway when daddy and I were still talking about your health and just how fair it would be to bring a child into this world who will have challenges. Mommy would always tell daddy that I couldn't go into the hospital, be induced, deliver a baby and leave with nothing. How would we leave the hospital without a car seat? How could I deliver a baby and say goodbye? How is that right?

It just makes me sad that this journey that you are on, has been difficult. You are only three months old and you have endured so much. When I look into your eyes Adele, I see strength and hope and love. I see right into your soul. I see this beautiful angel who has impacted so many lives in such a short period of time. I see that you have changed so many views and you have done this, not only in High River, but all across the world. You have brought so many special people into mommy's life and I love you for doing this, as it has made me a better person. You have made me a better person. My three month old has taught me the value of diversity. You have taught me that by having an extra chromosome, it has made you one extra special little girl. You have taught others that love is unconditional. You have encouraged others to find out more about Down syndrome and have shown so many just how resilient and beautiful you truly are....so beautiful.

Mommy gets scared sometimes about what lies ahead. Mommy fears the worst. I fear more hospital visits. I fear that you will develop cardiac issues. I fear that you won't be happy with your life. As a parent, you want your children to be happy and healthy. Bringing you into this world, mommy and daddy were well aware that sometimes it will feel like we are only taking steps back while in our minds, as parents, we should be working harder, we should only be taking steps forward. I don't want to feel defeated Adele. I don't want to feel like I have failed you. I don't want to feel that I didn't do everything possible to make sure that you were always moving in the right direction. I want you to smile. I want you to wake up knowing that you are such an amazing, perfect, loved and precious angel. I don't ever want you to look at mommy and daddy and wish for better, or to feel that we aren't doing our job.
I am your mommy Adele. I will always look after you. I will always love you. I will always be your advocate. I will always hug you when you need a hug. I will always lead you in the right direction. I will always show others that you came into this world for a reason. You were given to us for a reason. You have this diagnosis for a reason. You have changed so many lives for a reason.

It's just hard sometimes. Mommy feels drained. Mommy feels tired. Mommy told daddy the other night while I was cuddling you, I was close to my  breaking point. I could see all these bandages on your arms from taking blood. I saw bruises from the needles. Your little hand was all taped up with the IV poking out. You were exhausted. You were so spent. You were sad. You wrapped your arms around mommy and you held on, truly, you held on. I held you tightly, kissing you again and again. I rubbed your back. I rubbed your head. I reassured you that it was going to be ok. I was sad. Mommy plays through her mind often that it will get better. Others have told me that it will get better. I know, but I am living this right now. I am going through it right now. I need to acknowledge the journey that we are taking at this very moment.

When mommy feels that the road is bumpy and the thought of giving up enters my mind, I always listen to the same song. It reassures me. It tells me to carry on. It tells me that it will be ok.

Carry On - By Fun

I love you Adele.

Love,
Mommy

PS....please don't feel that I am in a slump or depressed. We have a great life, filled with joy, happiness and a lot of laughter. When we hit a bit of a wall, it's tough. It's therapeutic for me to write about the journey and it's important for me to share with all of you. xo

Halloween and Day 31!!!

Well, today is the last day of the 31 for 21 Challenge. I have blogged for 31 days straight to educate and raise awareness on the subject on Down syndrome. I hope that you took some valuable information away from the blogs, had a few cries and a bunch of laughs. It has been fun.

Last night at 1:00am when I woke Adele for a feed, I held her in my arms and I cried. I don't even know why I cried, it was bizarre. There was an overwhelming amount of love at that very moment. I didn't say anything to James, I just enjoyed the silence, warmth of Adele and the love. Just one more beautiful moment in the life of Adele.

Today is Halloween...I took a few pictures of the girls. It is impossible to get a good shot of both of them. Brinley knows her momma and refuses to look at the camera. :)

Getting Ready! :)

 

 

Sort of smile!

 

 

One looks and the other does not!

 

 

Nobody looks!

 

 

My hat is falling mom!

 

 

This sucks!

 

 

Enjoying some Trick or Treating!

 

 

I would like some candy!

 

 

Never mind, I'll sleep!

 

 

Soooo, these are my Smarties?

 

 

Ummmm....can you open my Smarties??

 

 

If you won't open my Smarties, I will suck on the sucker wrapper!

 

 

Smarties and Suckers!!!

 

 

Maybe if I look down, mom and dad won't see me eat all of my candy!

 

 

What did you say mom?

 

 

Halloween ROCKS!!!

 

 

 

I'm slipping......but coming back :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 19 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 

 

 

 

 

 

 

 

 

 

 

Getting The Word OUT!!!

Love this picture....even though James is wearing his tighties and a pea bag!

Well, October is almost over...another month down. I know that it's so cliché to say, but time flies. I don't know where the months go. I look at Brinley and see this big girl now, all grown up! I know that people say to hold onto this time, but I'm happy with it moving on. I am enjoying all of the moments with her and Adele. It's awesome with two girls. Busy, but awesome. October has been super busy and I loved it.

All ready for Halloween!!

We are all ready for Halloween. Brinley still doesn't really get it, but we will dress her up and take her to a few homes. I hope that Trick or Treating in High River puts a lot of smiles on the faces of all the kids and parents. It continues to be tough for so many. 
I saw the special on High River last night with Mike Holmes. It brings back a lot of memories, but what it makes me realize is that I don't know so many of the stories. I don't know what others went through, the details. I just know that the whole town experienced devastation and that lives were lost. Animals were lost. Belongings were lost. I don't feel I need to know all of the stories, but part of me wants to know what others have been through and how they are feeling today. I want to hug the families who lost their homes, belongings, loved ones and animals.
I hear so often that it's important to hold onto all the memories, what you lost is just stuff. I mentioned before that it wasn't just stuff, it's what we purchased, it's what we valued, it's stuff that we held dear.
Anyways, my wish for tomorrow is happiness and joy for the families in High River.

Almost back to tummy! :)

My next, kind of random thought.....I was thinking the other night about the blog. I know that people read it and seem to enjoy it but I feel that it isn't quite enough. I'm not about the numbers, but I am about the numbers. I know that some write blogs purely for entertainment, but I truly write to get the word out about Down syndrome, ok, and some entertainment.  I don't always write about Down syndrome, but I write about life, our life. This would all be worthwhile, if somebody told me that because of the blog, they decided to proceed with the pregnancy, knowing that they are carrying a baby with Trisomy 21. All I need is for one person to tell me that the blog made them feel that they could do it, they could raise a special needs child.  I know how it feels to be told that there is a 1 in 2 chance that your baby would have Down syndrome. I remember thinking that it was going to be too difficult. I just want somebody to feel reassurance. I want somebody to feel comfort. I want somebody to feel joy. I want somebody to feel relief and optimism.

HI DAD!!

Every day, I try to think of more ways to get the word out there...every day, I try to figure out how to reach millions, not just thousands. I know some may think that's silly, but it's my mission. Educate. Share. Laugh. Cry. It can be done. I promise.
Some of you share the blog on your Facebook and I truly appreciate it, a lot. I have some friends who share the blog every day and haven't missed one since I started writing. Please share and re-post and get your friends to share and re-post. I want it everywhere, well, not that site that when I click on it, it's naked girls. Not exactly too sure how that happened. It's gross.

Next....lately, I've been told many times that I will probably have it easy with Adele because children with Down syndrome are always happy. They are always smiling and she will always be a joy to be around. I think people need to realize that Adele is still a typical, normal child. What is normal?? I don't know if that word should really be used with humans. Who is actually normal? Anyways, Adele will get mad at me, she will yell at me, she will refuse to do her homework, she will cry, she will spaz out, she will fight with her sister, she will refuse to eat her veggies. The only thing that she will not do, is twerk! We all know what James and I will do if this happens......

Tomorrow is my last day of the 31 for 21 Challenge. I have been writing now for 30 days straight. I hope that you have gained some knowledge on Down syndrome. I am hoping that over the past month, you have laughed, cried and enjoyed our life. It's crazy and silly and sometimes really difficult, but it's our life and I love it.

Who knew I was a teacher?? I want to be a Pinterest mom! I want to be talented. I want to be all artsy crafty!! My poor art project looks like somebody did it with their eyes covered and their hands tied behind their back. :)

I'm slipping......but coming back :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 19 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)



Twerk or Treat!!

Brinley decided that when she saw this beautiful creation, she would like her daddy to make her a Miley pumpkin for Halloween! We are so proud of her! ;)
Daddy and mommy have decided that we will dress up as one of those creepy bears with our tongues hanging out and we will take her Twerk or Treating....TO EVERY HOUSE!!!
We WILL twerk for candy! :)

Thank God Adele only wants to be Minnie Mouse. She was using good judgement. :)


I'm slipping......but coming back :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 17 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

A Little Education :)

People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."

Down syndrome is a condition or a syndrome, not a disease.

People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.

Down vs. Down's - NDSS uses the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.

While it is still clinically acceptable to say "mental retardation," you should use the more socially acceptable "intellectual disability" or "cognitive disability." NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

MYTH: Down syndrome is a rare disorder.

TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies is born with Down syndrome, or approximately 6,000 births per year.

MYTH: People with Down syndrome have a short life span. 

TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

MYTH: Down syndrome is hereditary and runs in families.  

TRUTH: Down syndrome is hereditary in approximately 1% of all instances.  In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).  Translocation is the only type of Down syndrome known to have hereditary link.  Translocation accounts for 3 to 4% of all cases of Down syndrome.  Of those, one third (or 1% of all cases of Down syndrome) are hereditary.

MYTH: Most children with Down syndrome are born to older parents.

TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

MYTH: People with Down syndrome have severe cognitive delays.

TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

MYTH: Most people with Down syndrome are institutionalized.

TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

MYTH: Parents will not find community support in bringing up their child with Down syndrome.

TRUTH: In almost every community there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. 

MYTH: Children with Down syndrome must be placed in segregated special education programs.

TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

MYTH: Adults with Down syndrome are unemployable.

TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.

MYTH: People with Down syndrome are always happy.

TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

MYTH: Down syndrome can never be cured.

TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

National Down Syndrome Society

I'm slipping......

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 22 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

Intervention!

In need of an intervention....

 

 

Box #1

 

 

 

 

Box #2

 

 

 

 

 Box #3

 

 

 

 

 Box #4

 

 

 

What is left of Box #4

 

 

 

Why do we buy Halloween candy so far in advance, knowing that we WILL open a box and eat it all??

I am ashamed! I am thinking that I am no longer down 30 pounds. I am using Smarties as a reward system for Brinley. I need help. Send help.