Well sweet boy, yesterday was a very special day for us as we attended this annual event for families to have a chance to share their angels and their stories.It was emotional but it was great to have your book and pictures out to show them you! We met up nalahs mom,dad,sister and aunty before hand, it was good to see them again.We talked of you both and shared the funny things you guys did, we miss you both so very much.
At the service we were able to write your name on a star and when your name was called we went up and sister put your star on the tree, then mommy talked about you to everyone! I was so calm and had a sense of peace come over me when i spoke, it was great.I even read a poem.You were amazing nolan and still are, your life deserves to be shared with people, you are still teaching strangers and doctors because you deffied all odds! i love you so much, we will always miss you, but you will remain forever in our hearts sweety xoxoxoxox
Monday, November 7, 2011
Posted by Amanda at 12:14 PM
Friday, September 23, 2011
Dear Nolan,I first want to say that i miss you so much, theres never aday where i dont think about you.Your smile,your laugh,and the sparkle in your eyes are missed each everyday.I love you dearly.Mommy has something very special and exciting to share with you! today i went to Norquest which a college mommy will be attending for Nursing! I had lots of exams to write today to see what classes they need to place me in, im just so glad to finaly start this im doing it for you and your big sister, im going to make you both proud!It's because of you that im pushing forward with this career ,you taught me so much in your 19 months of life and now i want to make a difference and help the sick or injured.If i do things right i will be a Registered Nurse in a few short years, i dont care how long it takes or how hard it is, i know that its all going to be worth it! Your so amazing Nolan i will forever hold you in my heart xoxxoxo love, Mommy.
Posted by Amanda at 5:42 PM
Tuesday, August 30, 2011
Its been 2 months since ive had a good moment to write you, im always thinking about you especially when someone mentions your name, i just cant stop talking about all the things you used to do and what you accomplished in your 19 months.Mommy is sadend over the sudden death of your buddy Caleb he lived 29 months and 1 week he is amazing just like you, you both are brothers (twins) its crazy how much you 2 are alike.Im going to miss his sounds he made on the phone when i talked to his mommy.
I still cant believe its been 7 months my heart aches to have you here everyday.I know oneday i will have you again and untill that day im left here with your precious memories.Mommy got another tattoo in your memory its some lyrics from a song called "precious child" its so true for you.Mommy also got a tattoo for yoour sister cherry blossoms!Daddy got the teddy bears on your urn on his rist too!I hope your proud of mommy and daddy cause we are so proud of you son.Sister misses you dearly this morning i found her in your crib callin out your name and asking you if you feel better now.She said she made your tummy feel better.She speaks of you everyday we keep your memory alive nolie! Daddys heart is broken too he longs to see again i cant get over how much you look like daddy its amazing. I love you to pieces sweet boy xoxoxox love mommy.
P.S sister starts pre school in september!!
Posted by Amanda at 8:59 PM
Saturday, June 25, 2011
Well today is your 2nd Birthday! You came into this world June 25 2009 at 2:29am...you defied every odd in your 19 months here on earth! Today was hard not celebrating with you but i know your always in my heart, daddy ,mommy and sister stil celebrated your life today, with family and friends.We had a BBQ,watched your video,listened to your songs,released balloons with 2 notes on them hoping someone will find them so we can raise more awareness about trisomy 18! and had cake it was a bittersweet day.I love everything about you, you have changed me for the better .I love you son. Forever.
Posted by Amanda at 10:23 PM
Friday, June 24, 2011
Wow! i cant believe today is the 24th...today 2 years ago we were getting ready to meet you, this time 2 years ago mommy was starting labour in the hospital.Straped to monitors and doctors around talking about the plan.I enjoyed hearing your heartbeat and feeling your last kicks and wiggles before you would enter this world.Daddy and me were terrified of the unknown since you had Trisomy 18 we were told your chances of living were only 5-10% but had hope you would make it just open your eyes and see us even it were a moment.You did it all big boy, tomorrows your 2nd birthday,sadly we are celebrating it without you...but i know you are in my heart it will be a day to remember you with family and some friends, although im crying i am smiling, smiling because you gave us so much to smile about, mommy is just sad that i cant hold you, wipe your tears away,change your diaper,bathe you,play toys with you,walk with you ...everything we did together i miss.But i thank you everyday for the memories you gave us, you are amazing and have touched so many in your short journey , and still are teaching people! We love you baby boy, your sister always talks about you, and is very protective over your things like if we have kids over and they go into your room and play with your toys she gets upset and ays,"thats my nolies toy!" she loves and misses you so much.
Posted by Amanda at 11:22 AM
Wednesday, May 25, 2011
Well my Nolie Polie Olie you would be 23 months old today, last night mommy was crying holding onto you in your urn,with your blankie and sleeper in my arms as well.I just miss you so bad , please dont be mad at mommy for i am longing to hold you again. We talk about everyday wheather that be in the shower, in the car, outside, grocery store anywhere! pretty much everything we do reminds us of you little man because you did go everywhere! so those memories will be us everywhere we go.I feel sometimes i get this feeling a strong feeling like i can almost touch you when i close my eyes and think about you, your almost there in my arms.My dreams have been about you alot lately they are very real i can smell you, touch your hair,feed you, everything i should be doing for you i can in my dreams.I love those dreams i wish i never woke from them at times. I know sister is missing you badly we couldnt leave the house without the other day, she went to your crib and picked you out and said "we have to bring my nolie too" so we did! Daddy is also missing his boy alot, you are his twin it amazes me. Your 2nd birthday is next month June 25 im feeling scared but i know you will help through it, we are going to celebrate you but im going to miss you hard that day, you are just amazin little boy that made a huge impact on our lives.I love you for everything you did with your time with us, and forever im thankful for you. Love mommy,daddy, sister.xoxoxox
Posted by Amanda at 11:04 AM
Sunday, May 8, 2011
Well today was Mothers day, I missed you the same just like everyday day Nolie.Saturday was a special day for me, i was nominated along with 19 other Fabulous mommies for Fabulous Mother of The Year, knowing we were all fab to begin with so nothing changed even when the judges decided.Mommy had to answer a question it was tough for me, but i felt you there.It was really hard for me to get up and speak about what happend even though you were such a miracle, having to tell everyone you had passed away was heart wrenching.I wanted to just curl up into a ball and cry at that very moment.I thought i keep it all together aand tell what was on my paper, but i couldnt i was mixed in my emotions that the words couldnt fully come out, it was a blur when i sat down.I thought gosh i never even answered my questioned! i just cried and trembled in my voice telling about the things you did.I introdeced you to everyone! you were a star, everyone awed over beautiful face.I love my big man, i hope my public speaking gets easier over time right now its just all new and very emotional. I hope your proud of me baby boy. you are one strong boy, i wish i had just half the strength you had.Love you.
P.S. i Hope you LOVED the balloons we released for you today, sissy was excited to give you them.
Posted by Amanda at 11:13 PM
Thursday, May 5, 2011
I am thrilled that our now i lay me down to sleep photogrpaher Trina Lewis nominated me for this opportunity...i was chosen with along with 19 other fabulous mothers out of all alberta! Vote here on facebook if you like, just like my picture and your vote counts! i speak saturday mothers day weekend, if i win i get a fabulous vacation away. thank you!!
Posted by Amanda at 7:09 PM
Wednesday, April 27, 2011
Well it finally happend! Nolan mommy had the sweetest dream about you, i have waited 3 long months just to feel you in my dreams,just to spend a little time with you.It was so nice to see you well.I was carrying you around in the house and it was snack time so i set you in your highchair, you were so excited! I put a yogurt and spoon your tray and you gave me the look like, arent you going to feed me? I wanted to see if you could do it yourself, iwatched you pick the spoon up put it in the container of yougurt and feed yourself!! you made a huge mess, but it was a wonderful mess seeing the huge smile on your face.once you were done i picked you up and was holding you, i didnt want to put you down.I walked all day with you in my arms, everyone was asking how you came back, and i simply said,"the doctors made a mistake you werent really gone." You were soooo alive in my dream! i woke with a smile on my face! It was the best dream i had ever had. I love you, and i hope i have more dreams more often like this.It's nice having "our" time even if its dreaming.
Posted by Amanda at 1:01 PM
Saturday, April 23, 2011
Nolan, mama misses your sweet face.I enjoy all the memories you gave us i always smile and laugh telling people about the cute things you used to do that made you "nolie" how everymorning you would be kicking your legs in your crib when you seen me peeking at you through the bars.Or how when i would cook in the kitchen and you'd be next to me in your excersaucer looking up at me like i was the greatest mommy in the world.That look that daddy couldnt get over, daddy said,"i never seen another boy besides me look at you the way the nolan does,he looks at you like wow your really my mom" brought tears to my eyes you always stared at me like you wanted to just say thank you for the life i gave you.You were amazing litte man.I love you.
Posted by Amanda at 11:20 AM
Tuesday, April 19, 2011
Could we ever forget your sparkling eyes
or the way you brightened each day,
or your smile
which is etched in our memories,
so you're never far away?
Could we ever forget
those priceless moments?
The answer, of course, is never.
For you were part of our lives
for a brief time,
but you'll be part of our hearts forever
Posted by Amanda at 11:37 AM
Tuesday, April 5, 2011
Nolan Alex Chisaakay-Soucy
"Our Fat Man"
Nolan was born June 25th,2009 in Edmonton,Alberta and was granted his angel wings on january 21st,2011,Due to complications of RSV and Bacterial Pneumonia.
The day our miracle joined our life is a day we will never forget.Nolan had fight wanted to show the world!Nolans life would seen too short to many,but those who were touched by him,understood that the quality of his life far exceeded the quantity of time in which he lived.His gentle smile could melt the hearts of those around him and though he never spoke a word,his voice and thoughts could always be heard.
Although Nolan had Trisomy 18, he possessed a strength and ability to overcome incredible odds and physical challenges.With his courage he led us to believe that each day is a blessing and an opportunity to create lasting memories.Nolan would spend hours cuddling close to those he loved so much.He enjoyed music, and listening to the sound of his sister Lexis laughter, which always made him smile.
With Nolans passing, we remind others that his life is one to be celebrated.Nolans Journey has not ended:a new chapter has just begun and although we will miss every minute of everyday,especially his beautiful smile, he will remail in our hearts forever!
Nolan is survived by his loving parents,Nathan and Amanda, and Big sister Lexi.Together forever in our hearts!
Posted by Amanda at 12:06 PM
Friday, March 25, 2011
Well my sweet boy you would be 21 months old today, and we should be singing happy birthday with a very special cake made just for you.Sissy and I are going to bake one today i just dont feel we should stop i know you enjoyed the candles and all the celebrating.We will also be relesing some balloons hopefully tonight, if daddy makes it home before dark after work.If not they will be sent tomorrow for sure! I lovve you handsome man, thank you for all the amazing memories you gave us.Happy 21 months!
Posted by Amanda at 9:16 AM
Thursday, March 24, 2011
Friday, March 18, 2011
March is trisomy 18 awareness month, today is 18th and marks Trisomy 18 awareness day! Please spread awareness everywhere to anyone.You would be surprised at how many people have never even heard of this it is one of the most common trisomies out there next to Trisomy 21(down syndrome) everyone knows what that is.So why doesnt anyone know about Trisomy 18!! help me and our trisomy 18 family world wide by telling a close friend,a family member or even a stranger that Trisomy 18 (T18) (also known as Trisomy E or Edwards syndrome) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. It is the second most common autosomal trisomy, after Down Syndrome, that carries to term.
Trisomy 18 is caused by the presence of three – as opposed to two – copies of chromosome 18 in a infant's cells. The incidence of the syndrome is estimated as one in 3,000 live births. The incidence increases as the mother's age increases. The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.
This is my Nolan, born June 25 2009 at 42 weeks 4lbs 10oz 18 inches long Full trisomy 18,VSD and DORV.He needed no assistance breathing when he was born! Nolan only needed an NG tube to help him get nurtrition.At 6 months he discovered baby food and loved it! 13 months old nolan had Gtube surgery and a Fundo repair.Nolan always had a smile who could brighten anyones day.His eyes full of love.We gave our Nolie a chance at life, he lived 19 beautiful memory filled months, he said "dada" and LOVED his big sister Lexi they often laid in his bed and chatted every morning.January 21 2011 was Nolans goodbye, RSV,Bacterial pheunomnia,Viral pheunomnia,and bronchilits took his sweet life, he fought with everything he had. Nolie will forever have a place in our hearts. RAISE AWARENESS!!! TRISOMY 18 IS COMPATIBLE WITH LIFE!!! make a change and tell everyone you know. Nolie's smile is living proof, a miracle.
Posted by Amanda at 10:52 AM
Wednesday, March 16, 2011
Posted by Amanda at 10:06 AM
Saturday, March 12, 2011
Nolan i think about you every hour of the day, i miss you in everything i do.I know your still here just in a different way,your story i have told so many times in this town since you've left you are still touching the lives of so many and i hope you know this.It's been nearly 2 months now and somedays are better than others you are just simply amazing in everything you did and still are doing.You have gave me strength to still live and take care of your sissy, we go for walks often and i always think about how you would of loved to go in the woods staring at the trees a watching the birds.Sissy loves seeing the deer.My son i cant wait to hold you again,my arms are aching for you.love you.
Posted by Amanda at 9:48 AM
Tuesday, March 8, 2011
I will no longer blog deep feeling on Nolans web page as i want it to be a hppy place for me to visit and post happy things about him like pics and videos...feel free to visit my new blog page whenever you want to see how we are doing.Love you all thank you for continuing to follow us, i wont even stop bloggin about out little man!
Posted by Amanda at 5:22 PM
Sunday, February 27, 2011
Friday, February 18, 2011
My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She’ll tell a whole lot more.
Ask my Mom how she is
And because she can’t explain,
She will tell a little lie
because she can’t describe the pain.
Ask my Mom how she is,
She’ll say "I’m alright".
If that’s the truth, then tell me,
why does she cry each night?
Ask my Mom how she is,
She seems to cope so well,
She didn’t have a choice you see,
Nor the strength to yell.
Ask my Mom how she is,
"I’m fine, I’m well, I’m coping".
For God’s sake Mom, just tell the truth,
Just say your heart is broken,
She’ll love me all her life
I loved her all of mine.
But if you ask her how she is,
She’ll lie and say she’s fine.
I am here in Heaven
I cannot hug from here.
If she lies to you don’t listen
Hug her and hold her near.
On the day we meet again,
We’ll smile and I’ll be bold.
"You’re lucky to get in here, Mom,
With all the lies you told!"
Posted by Amanda at 1:09 PM
Wednesday, February 9, 2011
Saturday, February 5, 2011
Wednesday, February 2, 2011
You fought with all your might,i even got to kiss you goodnight,you took your first and last breaths with me,you were here with me,19 months baby boy,so as i say see you later i know you are safe with our creator.I always kiss you goodnight knowing you will keep me safe and alright.your smile always wipes my tears away,cause i know baby i will see you one day.
Posted by Amanda at 4:17 PM
Saturday, January 29, 2011
Amazing, there are no words i can say to explain this beautiful day.It was shared with over 100 people,so many friends,family,nolans care team,and even his pediatrition Dr.Mcgonigle who was there during the great times and even till the very last moments of nolans life.Speaches were made by family, grampas and grammas.It was so appreciated with all the help we had to get this ready and send our nolie off.It was closure knowing we were the greatest parents for nolan, we provided him with the best life a child like him could ask for, he got to explore and see the world in his own light.He only knew love he only knew happiness.Nathan and I are at peace with everything nolan is where he belongs now and he will always be with us everywhere we go.He is simply amazing, i had no idea nolan had touched so many! he touched thousands! upon thousands of lives.We love him so much.Nolan Alex Chisaakay-Soucy an amazing miracle of life.
Posted by Amanda at 11:16 AM
Saturday, January 22, 2011
Nolan....as i sit here at the computer crying as i type this sad update im thinking about nolans sweet face and how he had changed us from the moment we found out about him.At 6:40pm january 21 2011 nolan went to heaven, we held him with every last breath he took it was the hardest thing we have ever had to go through, loosing our baby boy we so muchly wanted to live.Nolan struggled to fight off RSV,Pneamonia and Bronchilitis he was on antibiotics in the stollery for 4 days through IV we thought he would pull through and get better,he had ups and downs those 4 days.It was hard im not going to get into details but i will when im ready share his last week here with us.His last moments were precious we cried,i told him we loved him and everyone loved him, we kissed him we held him tight we told him it was alright,i said he changed me forever and that it was okay if he had to go, i think we told him we loved him a million times within 2 minutes.It was fast to fast i wasnt ready but he was.We will never forget the times we shared with our miracle how he defied every odd! and showed doctors who is boss! i love him but i miss so much, it hurts with every breath i take.Nolan will have a celebration of life this Friday january 28th at 3:30pm in edmonton, at park memorial.Please celebrate our sweet boys life with us.for those who know me you have my number call me for more details, thank you everyone for support i will still continue to post about Nolan.As its not goodbye...its see you later ...
Posted by Amanda at 5:46 PM
Sunday, January 16, 2011
Nolan has caught another one...we took him to the hospital late last night as he was worse over 2 hours.We were worried he may of aspirated since it looks like his fundo repair has come loose, xrays ruled out this out.We rrefused antibiotics and took him home, i was up every hour checking on nolan giving him pedialite and chest physio.Im exhausted.Today he was lethargic he slept prety much alday this wouldnt be so conserning if it were myslef but with nolan its alarming.So i gave his pediatrition a call and asked if nolan may have RSV and if were smart of me to take him back to get him tested, he agreed.When we arrived they checked his temp it was still 39.1 never changed within the 20 minutes of checking it at home.The doctor swab him and asked if i wanted to leave him over night, i refused so she gave him a dose of amixicillin and a prescription for it to treat him as if he had a respiratory infection since he worsened over 12 hours.We are also getting tamiflu.
When we got back home i bathed and rubed vicks on him,put saline drops in his nose and gave a good suction, he is now haveing a pedialite and formula mixed feed i hope he will tolerate it, he's falling asleep now so im off to get some rest before he wakes again, please pray for nolie that he will get better and passed this.
Posted by Amanda at 11:39 PM
Wednesday, January 12, 2011
Yesterday we made a trip to edmonton for Nolans appointment with Dr.Mcgonigle,it went great!Nolan did some showing off for the staff with his babling and trying to do alittle crawling with support from moma.He is 15lbs 6.4oz 27inches long it makes us thrilled that our boy is still growing!We discussed a wheel chair and came to a decision that later on we would look more into it a stroller for now works just fine.There was a concern nathan and I had,back in july nolan had his gtube/fundo repair the fundo repair was meant to stop nolan from vomiting which can cause him to aspirate then turn into pheunomnia.He had wretched a few times and accually brought up formula during his feed even when we vented his tube to let the air out.He has vomited about 4 times in the past 2 months yesterday he deminstrated this for Dr.M while he used the tongue depresser nolan gaged and brought some food up with it.Dr said this is very concerning we are praying he wont have problems if it only happens once in a while, to the concern is that he most likely loosend the fundo repair.For now we just position him and vent faster! so this doesnt happen.Either than that nolans a happy little man that enjoys picking his nose now!
Posted by Amanda at 2:40 PM