Frusteration

the 21st marked 9 months since i held nolans warm body close to me as i kissed him a million times and said goodbye,it was an alright day , i cried listening to his song in the car. (hold my hand). I didnt dwell in the fact he died i just remember him and miss him lots wishing i could burst into his room and surprise him to see his huge smile and hear him giggle. We love him so much.I dont think that love will ever die.

Onto my frusteration...School starts January 2nd they want the full tuition for the 2 classes im taking on the first day of school which adds up too 1540.00 I dont qualify for the part time coverage due to the income being to high.Im hopeing to find someother subsidy because in all reality we still have bills,rent and other things to pay for im putting money away into savings but i know i wont have enough when the time comes.In the 2 years of school that i need i have 13 classes. each at 770.00!!! makes me sick to stomach that they charge so much for people to better their lives and future.Not to mention im going to college after...i will be in debt for along time.I want to do this and i am going to...just wish i had some help to make my life better and do what i want to do in life and become a nurse! Im going to look into funding from the government but untill then my 2 years of upgrading will cost me 10,000. i cant believe it.

Stired up emotions...

Its nearly 8 months since our Nolan passed on, these past 2 months have gone to fast...and now that things are slowing down alittle those emotions that i havent been able to feel amongst the crazy life are now comming to the surface again.I think i have been trying to avoid it all and act like he didnt die, now im going to pay for it.These days i have been looking at his pictures daily and watching his videos the reality of not seeing him here in our home is hurting me deeply.I would give anything to have him here hearing his giggles and seeing his huge smile, nolan brought light to any room, even if that room was bright he made it even brighter with his presence.

Lexi is keeping us going forsure, she starts preschool on the 20th so ive been busy trying to prepare her and getting stuff organized, i dont know what i would do without her.She's hurting for her little brother as well, and it kills me to have to explain that he will never be back in our time.Her 4th birthday is comming up on the 25th i cant beleive its been 4 years already.

Im trying to keep busy while Nathan has been gone as well for work, he wont be home for another 2 more weeks,and he hasnt been home in 34 days..so its a strain on him missing home and us while dealing with his greif over his one and only son and best friend whom recently passed in June.I so wish this wasnt happening, our life before was our normal, all the doctor appts,the beeping of nolans machines, the round the clock feeding scheadule and not to mention arms full of everything just to go out somewhere.I want that normal back.Our family was whole then, now we are trying to fit the puzzle peices back, but on our way to do doing that there will always be a huge piece of this puzzle missing.I know he will be our son forever and he will have his place, but as a mother with one empty arm it's hard to push on at times.

Emotions.

We survived his 2nd birthday without him.Im so sad he wasnt and still not here, everyday i find myself thinkin about the things he would be doing, like crawling and playing with his big sister like they did around the clock.My emotions at night kill me, late nights of crying myself to sleep, sometimes frusteration also especially when my mind starts to think about the night he died.I HATE how that is burned into my brain, its something that will never leave.

We went camping july long weekend with the family, had tons of fun! lexi loved sleeping in the tent in her sleeping bag, shes such an outdoors child i love it! Some of the time i found myself thinking how much nolan would of loved camping too how he would be this 2 year old running around with endless energy, but at the same time he wouldnt be nolie without trisomy 18...he seriously melts everyones heart, even strangers who didnt know him, awhed over his cuteness.gosh i miss him.It's nearly 6 months and for me it seems like time is frozen, as everyone else around me is going on with life i feeel stuck, in a grief of wanting my baby back.So september will be a huge a jump going to school, but i think it's going to help me, its going to get me to where i want to be in life, A Nurse! i cant wait till that chapter in my life.

June 25th He would of been 2...

June 25th 2009 at 2:29am Nolan Alex Chisaakay-Soucy deffied all odds and was born Vaginaly and Natural! he made it through 42 weeks of pregnancy and over 12 hours of labour...he came fast near the end i pushed for maybe all of 5 minutes! Although silent at first when he was layed on my tummy he opend his eyes and let out the tinest little cry.I was overcome with emotions and smiled, but i was also concerned about when he was going pass, so i was scared, i was already so inlove with this little person inside of me, and then to finally have him in my arms was just amazing.His 19 months with us was beautiful.I still love him.And always will.This June 25th 2011 he would of been 2, we celebrated his life with family and friends.We had a BBQ,balloon release with notes on them about trisomy 18 hopeing someone will find them!, cake, his music and video.It was a peaceful day. And a great day for all to remember what an amazing little man he was and still is, having a huge impact on so many! We love you little fat man!

A song that touches me deeply.

They let him go.They had no sudden healing.To think that providence would take a child from his mother while she prays is apalling.Who told us we'd be rescued?From what has changed and why should we be saved from nightmares?Were asking why this happens To us who have died to live?Its unfair.This is what it means to be held how it feels when the sacred is torn from your life and you survive.This is what is to be loved.And to know that the promise was when everything fell we'd be held.This hand is bitterness, we want to taste it, let the hatred numb our sorrow.The wise hand opens slowly to lilies of the valley and tomorrow.This is what it means to be held...
This song is amaing its called "held" by Natalie Grant.

A step away...

The pain is worse over the past month it could be the fact that Nolan would be turning 2 on the 25th...its eating at me knowing he wont be here.I cry daily, i dream nightly about him, some of those dreams are nightmares trying to bring him back, or knowing conciously he is dying.I HATE it all, and i would give anything to have him back in my arms where i was happy.Im not the same,i dont think i ever will be my tension is very short and i anger easly at people who complain about never having anytime without their kids or never getting that "break" be thankful you have all your children is what i want to scream!!! Im hurting on the inside, its ripping me apart its taking everything of me this grief sucks. I am terrified to go on and have more babies i am scared to death of people around me dying, i dont know how i could deal with another death in my life. 4 months+ is the longest i have been without my little fat man, it feels like an eternity but yet it feels yesterday that he entered this world.

maybe i am forcing myself to get "better" for others around me since i feel like if i bring him up or cry that i am bringing them down with me in my sorrow and pain.I just dont know how else to feel at peace, talking about him and all the great moments are my favourite thing! i laugh talking about the sneeky things he would do like pulling out his NG tube almost everyday, or when he discovered picking his nose and eating it LOL! every little thing he did was such a huge celebration he was always learning new things about himself things we were told he would never do or know he did! I loved every second of his life, even the hard times when he was very sick and i got no sleep, because he was still here and thats all that mattered.

A better day.

It's been alittle while since i shared some deep emotions, i have been having an extremely hard time dealing my grief, anger, and sadness all at once.This pattern always comes around from the 21st to the 25th of every month, makes sense since the day he died was 21st and his monthly birthdays were the 25th.But this time i couldnt control my emotions, i really wanted to run away, i was taking my anger out on Nathan and not giving my full attention to lexi , i cried myself to sleep that night knowing how horrible i was acting and how it wasnt fair to them.I hate feeling this way and i really dont mean to take it out on the ones i love.

Im worried about next month...June, nolans birth month he was due on the 12th but came on the 25th, i get extreme heart pounding anxiety thinking about the things i should be preparing for and organizing.I planned on making a giraffe cake for him.We are still going to have alittle something in his honour but it still will never be the same, i wanted to see his precious smile when we opened his gifts with him, the way his eyes got big when we sang happy birthday he loved the candles, he loved being around people, he was just...love.

I miss how happy i used to be looking into our miracle boys eyes, i feel like i drag everyone down with my sadness, like im trying to climb out of a huge never ending hole.The emotions at times are just so unreal, nothing i have ever imagined i would go through, But i believe i can go on its just going to take time and i hope everyone understands.I know i am going to go on to do amazing things in my life because of this journey, the woman i have become is because of this all.The push to do things that i want like school and nursing is greater than ever, i cant wait to get started.For now i am a mother trying to live with grief and manage a household, It's not an easy task but im doing it.Today was a better a day i dont know what tomorrow will be like, for i am living day to day trying to get better handling this heartache.I know i can do it, i have my Lexi to help me, she is amazing.I think nolan would be proud...

21st marked 4months

Well yesterday was pretty rough,i knew the night before what day was comming the next morning.Waking up was dreadful, but i pulled my butt out of bed and we went fishing.Thought it would help pass this nasty day of the month, another month has came since i have seen my little boy. Fishing was fun but i was crying behind the sunglasses i was glad i was wearing them then i didnt have to answer family as to why i was crying.They say its gets easier part is right, but really the only thing thats gets easier is masking the pain.The pain is always there just easier to hide.So as another month passes i still go on.Next month is going to be hurdle his 2nd birthday, june 25th...im scared, we are still going to have a celebration thing for him even though hes not here, im just going to be scared of the emotions that will come with that. We miss him so bad.

Please mommy dont cry...

please mommy,dont ry,do not be sad.
treasure the time however short we had.
I miss you too, but i can feel your love.
Even up here flying,like a little dove.
I know it seems scary,and you feel all alone...
no one can ever replace me,I was your own.
Your sadness means i was loved everyday.
Though you cant see me, beside you I lay.
It takes so much courage,for you to go on.
I know our time together wasnt very long.
But you now will be stronger for knowing me.
It will be okay someday mommy,you will soon see.
In the times that are hard, remember i am here.
Never far from you watching,always very near.
It isnt fair we have to live so far away.
But dont worry, i hear everything you say.
I am with you ever step that you take.
Sending reminders I love you,for your sake.
I grew in your presence but then slipped away.
Intead now forever in your heart i will stay.

That feeling...

Lately its been hard without Nolan, lexi keeps yelling out for her Nolie.She longs for her baby brother and still doesnt fully understand that nolan wont be comming back into this world, only in the other lifetime(something we havent discussed with her yet) explaining to her that nolie is in a better place where he we will longer get sick is easiest.I have had the worst punch in the stomach feeling, like when knowing you cant hold your baby, or walk into his room to see him in his crib with that big smile that makes everything worth it.Its a knock the wind out of me,dizzy catch my breath feeling something i have never experienced untill i have lost my son.We are doing good, we smile,we laugh we go out and do family things.Theres always that feeling where i feel sad through those times though i so badly wanted nolan to exerience these family activities just like he did when he was here, i know he would of loved fishing with his big sister.Nothing will ever feel the same without him, there will always be a piece of my heart missing in everything i do.I so badly want him in our arms again, i dont want this pain anymore.He really taught us alot during his time, and i cant wait to make him proud and become a nurse! This journey is not easy but its one that we will never forget.

My Dream.

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.

3 months already :(

(picture was taken about 1 week after nolans gtube surgery and fundo repair he was nearly 13 months old, we almost lost him.Here he is cpap machine a higher flow of oxygen to help open his lungs up)

Yesterday April 21st marked 3 months since Nolie passed away in my arms, the vision of that will never leave my mind.Although peaceful, it was the worst day of my life.For parents who have lost their child, no matter what age knows this pain.It's a pain that stays in your heart forever, and the waves of grief never go away.I find myself watching his videos everyday,looking through his photographs and smelling his clothes.Its the only way find comfort in knowing he lived, and that i did everything i could for him to have a comfortable life as much as possible with little intervention, i believe in treating your child how you would want to be treated in that kind of situation and for me, i would want to be comfortable leaving this world.I think we succeeded in this for Nolan.

His death was beautiful very peaceful even if i was a mess, he knew we were right there and the peace over his little face was a first in over 1 week, he was ready to go and we let him know it was okay even if we were crying.19 months is beyond what we were expecting and i can live with that, nolan lived a happy life and had barely any hospital stays..3 in his 19 months of life is just simply amazing. Doctors are still shocked at how little medical care he required through his journey. He did us proud, and now im planning to do him proud. He's my inspiration to fulfill my dream of nursing.For both my babies. I love my family.

Replaying over and over.

**Sigh** Well lastnight wasnt very good for me, i was trying to go to bed but my brain was replaying Nolans last hours,minutes and seconds over and over again, it puts me in tears everytime this happens.I dont know why i do this it's like i cant control when it happens! I just wish there was a switch in my brain that i could turn off to stop it when it begins to happen.I would rather remember nolans happy moments with us.The ones that make me smile,and laugh.I had blamed myself for the first 8 weeks that he was gone because i felt like we didnt fight hard enough to keep him alive that if maybe we did intubate that he may have made it alittle longer, but i know that would of been selfish since his brain was shutting down and all response systems werent responding to treatments anymore.Nolan's entire 4 short days in the hospital and the only time he was at peace and calm was when he was dieing.He needed to go to be free of pain...no more sickness no more poking no more anything just free from it all.That helps me through this is all, is knowing he will never experience it again.He so amazing, my kids are my everything.

Lexi's visit to Dr.Mcgonigle/Giving nolans medical equipment back.

Yesterday was Lexi's checkup,she was pretty excited to have a nurse look her over! she weighs 30lbs and is 37inches tall! We followed up on her heart murmur which was still there Doctor said it was innocent but he will be watching it as time goes on.For her behavioural issues, it's all apart of her not fully understanding that her brother is gone and not comming back.Putting her therapy would be pointless at this age cause she wont understand that either, maybe later in life.For now i was told to discipline her as normal and not let her get away with everything just because she's mourning her brother.At times i would feel bad for putting her time out and listening to her yell and cry.But we can't let her run us.Before we left for the appointment she really thought we were going to pick nolan up to bring him home. It's so heartbreaking having to explain to her all over again.

After her appointment we headed over to the Stollery to drop off Nolans borrowed heart/oxygen monitor,feeding pump,and suction machine...walking into the doors of the hospital that we visited during nolans sick times and surgery i didnt think i would feel so empty :( it was exremely hard.Like i just wanted to run upstairs to see if he was okay, but i still know conciously that he's gone.I talked with his nutrition team about what happend as they were all so shocked with nolans passing, but also shockd he lived 19 months! and the things he accomplished were just amazing.I know that going to that hospital will never be easy as our last memory of him alive was there and him passing was there as well, its just a place that he sometimes needed in his time of sickness.we will always miss him.

Juna!

Alright so we finally have a new puppy, she is a Black Lab/Retriever...she was a surprise for Lexi we knew about her for over 2 weeks we even went to pick her out of a liter of 19 puppies! She has now been home for about 5 days and is doing great...she sure is keeping busy since she is only 8 weeks old, she requires tons of going outside to go pee,although she does have lots of accidents around the house.We are happy with her!

The light that shines on

The world may never notice

If a Snowdrop doesn't bloom,

Or even pause to wonder

If the petals fall too soon.

But every life that ever forms,

Or ever comes to be,

Touches the world in some small way

For all eternity.

The little one we longed for

Was swiftly here and gone.

But the love that was then planted

Is a light that still shines on.

And though our arms are empty,

Our hearts know what to do.

Every beating of our hearts

Says that we love you.

We thought of you.

We thought of you with love today. But that is nothing new. We thought about you yesterday. And days before that too. We think of you in silence. We often speak your name. Now all we have is memories. And your pictures in frames. Your memory is our keepsake. With which we'll never part.Untill we meet in paradise. We have you in our heart..

Always talk to us about him....

~ If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died--you're not reminding them. They didn't forget they died. What you're reminding them of is that YOU remembered that they lived, and that... is a great gift. ~Mentioning Nolan is what i want~ ♥

Trying to make his Sister happy.

These 9weeks have been the hardest weeks of my life.Not only is Nolan gone, but lexi has been grieving and its been so hard to make her happy.When we take her out she acts out in the strangest ways like yelling at us and at times hitting us in public if she doesnt get her own way about something.This is something lexi has never done before, when we would go out as a family she would be on her best behaviour and not make such a scene everyone in the grocery store.Us greiving as parents is making it difficult to handle her at times, its so hard :_( i just want to scream and breakdown.I dont even know how i go on.I just do it.It's hard, i feel like im living a nightmare and i just would like to wake up and have things to the way they were 9 weeks ago.Unfortunatley that wont happen in my life time, i know we will meet in paradise oneday and i will finally have my Nolan back.I can't wait till that day.Nathan and I are doing best to help lexi, we do so many daily activities such as walking outside, playing in the yard,swimming etc... But it just seems like nothing is good enough for her at the moment, i know it will pass (i hope) very soon.Untill then we are trying to make his sister happy.

Photos i made

2 Months...

January 21 2011 at 6:40pm our boy passed away in my arms peacefully. It's been 2 long months without him,everyday that passes just seems longer than the last since i have held him or seen his sweet smile along with his sweet laughter.We are doing well with his loss, although grief really likes to creep up on me sometimes especially hearing certain songs or seeing other little boys who are around his age.Lexi still sometimes asks to have her Nolie back, it breaks me knowing she so badly wants him back and i can't bring him back. He will forever be ours... in our hearts, he really left a huge impact on us,and remembering how short life is. I love him for teaching me things i had never or would of never knew if he had not came into my life. I love him for everything he has showed me.

~March 18 trisomy 18 awareness day!~

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.

I've been told...

Today marks the first day that someone has ever came to me on facebook and explained that what we're doing isn't right.That celebrating Nolans 2nd birthday isnt right,that us having his room isnt right,that lexi kissing his urn when she feels isnt right.That how are we ever suppose to move on, yes they said move on! if we dont pack his room away like he never existed.We are trapping our family friends by having his room and celebrating him.A nerve has been hit hard! i thought how dare someone who has never lost a child tell me these things! it hasnt even been 2 months since his passed and they expect me to "move on" i dont even know what the word means! its not like a break up with a friend or girlfriend where you just "MOVE ON"! he was our son who had lived a life with us! 19 months! that we were told we wouldnt have! We are living our life we arent holding back just because we nolan isnt here with us.Im not sitting in his room hours of the day expecting him to come back, its a place i visit 2 times a day, or whenever i just want to be close to him.Whats wrong with that?! it was his room,his crib,his clothes,his pictures,his toys and everything else im not packing him away and just going to forget he even existed, that wouldnt even be healthy! for now his room stays this way its my happy place when i feel lost.Not to mention lexi loves going in there and talking about her brother playing with his toys, im just glad she remembers him this is what we wanted.To me what we are doing is healthy considering its not even been 2 months yet.I will keep his room the way it is for awhile as we are in no rush to have another baby yet there are things in life we want to do, ie school for me and focussing on lexi.Nolan will always have a place in our family and everyones hearts who has touched he was a miracle, what family wouldnt want to celebrate him!

Trying to Explain...

Today was a very heavy heart day...we told lexi we were going to the store to get her a new baby a toy baby just for her to take of.Well her reaction to that was "i want my nolie! lets go get him!" we said nolie was in heaven in the sky watching over her.She then said"lets go get him and bring him home,pretty please." I held the tears back chocked up and explained to her that nolie was in a better place,that Nolie will no longer get sick and have needles in his arms making him have owiees.She said with a sad face "okay." I only wish we could bring him home.She has been so good about everything,but she's hurting for her baby brother to come back home somedays she thinks he is still at the "hosical"(hospital) and often tells me to get ready to go see him,it breaks me inside because the last time she got to see him while he was alive was in the hospital while he was struggling to breath.Then in his casket,i remember at the end of his service she whispered to nathan and I when we brought her up to see him again,"Nolies still sleeping?" i whispered back "yes hunny." I dont think she will ever forget her Nolie everyday she is making things just for him and of course we keep it all.Shes so amazing, i love my family.

Visit with His pediatrition...

Nathan and I waited 6 weeks for this day, this day was going to be our closure. We had our appointment with DrMcgonigle Nolan and Lexi's pediatrition, to discuss things about Nolan and all questions we had.Also we met with his homecare nurse who took care of him and came to our home whenever we were worried about him.She was so great, the entire team we had were a blessing.Sandy was her name, and we were all talking about how in the beginning it was so overwhelming haveing nolan and lexi, in the first few months lexi took having a new baby home kind of hard, but eventually she really grew to love him, like peas in a pod they became inseperable.We laughed at the funny things nolan did, and his famous hair!
P.s we nathan and I got matching tattoos! the staff loved them!



Around 5pm we arrived to Dr.M's office it was empty no kids so we watched the fish in his wicked awesome tank and talked about how Nolan loved the yellow one, we always showed nolan the fish and he was just facinated with the bright yellow one, it was the cutest.Dr mcgonigle and staff greeted us with hugs and condolances,they are such wonderful people.WE have never seen drM's actual office where all his personal things are like his wall filled with all the beautiful kids who have passed on.Along with dream catchers nathan admired.We gave him photos of nolan to put up, it made me smile and awh when i seen so many trisomy 18 babies on the wall, one who lived to be 10! and especially Nalah, along with Parker.We go right to talking about how we missed him every hour of the day, and how i was inspired now to become a nurse, he highly beleives this would be perfect for me to persue that i would make nolan proud.DrM had lost his son as well and became inspired by his son to do what he's doing today, taking care of special kids.It's so amazing what he does.



Our questions were answered, Was nolan in heart failure?and did him having RSV progress this?

yes nolan was in early heart failure,RSV did play a huge factor in his death in progressing it faster.causing pheunomonia and brochilitis.He went on to tell us that Nolan died one of the most beautiful deaths he has ever seen, he went so peaceful no pain,no struggle to stay alive by machines. Nolan knew he was surrounded with love and in your arms made him know we were always there no matter what.

I asked about his Pin Pointed pupils that the nurse was saying out loud, during his last few minutes while unconcious he told us that was a sign he was passing away, that his brain was shutting down and his response system was gone.This is why his fever was uncontrolable during the last 40minutes his body wasnt responding to advil or tylenol.RSV kills the cells if it gets bad, this is what happend to nolan.Along with his early heart failure cut his life short. But nolans story is amazing he was always loved and still is!



.

It Sinks in...deeper everyday.

Okay so its been abit since i've poored my heart out, if at all here.Im sooooo broken im trying to be a mommy to Lexi now and its gets difficult due to her missing her little brother as well.I never knew this road existed untill the moment i held nolan as he passed away in my arms, my tears were all over him.And now they all over his photos and blankets.Im missing him more than i ever though i could(if thats even possible) i knew one day he would pass, but i could never prepare myself for that moment, everytime i did i would just cry and shake my head.I never wanted to imagine life without my Nolie.

I cry so much we went icefishing on family day, i was so excited to take Lexi cause as i child i enjoyed it.We got to fishing, i had my sunglasses on due to the sun.There was a family with a small baby and i cried watching them hearing the baby cry or make noise just broke me,no one else knew.I looked at lexi she was so happy running around i just ditracted myself again.I love her.Im now living for her. Nolan would want me to be happy so im trying so damn hard! But sometimes the pain is so much i feel sick, somedays i dont want to get out of bed i just want to cry and avoid everything im feeling that day.

Somehow i pull my head off the pillow and just get on with my day, i visit nolan every morning in his room i look and touch everything i tell him i love him several times during the day.I still havent washed his basket of laundry his scent is all over in his room, i dont think i will for awhile.Life is just hard when you loose a loved one especially your child or baby it shouldnt be the parents planning a funeral or deciding weather to bury or cremate, it should be the opposite its just not fair!!! Nolan had a wonderful life with us and i just want him back i want all the sounds of the machines back on like his feeding pump, i want to change his gtube again, i want to bathe him,i want to lotion him,i want to kiss and smell him, just hold him one more time but i cant.

I do feel some regrets i know i shouldnt but i cant help that either i guess its just the process,we were told that nolan would get better with his virus and that intubating wouldnt help him if he got worse, it would just make his body suffer.But near the end i was scared and wanting him to be intubated thinking maybe he just needed to rest for his lungs to get better.But at the same time we didnt want to see nolan like that, i was confused to why he passed away so fast,one minute here the next gone.I couldnt understand why i thought it would of happend differently like a sign that he would pass away, but we got none.Just him sick.Very very sick RSV,Bacterial Pheunomonia,and Bronchilitis.It just took over and he got tired of fighting when they tried to CPAP him.nothing worked.It was difficult picking him up off that bed knowig he would die in my arms, i felt like i was going to collapse my knees were weak, i was dizy, i was heeving trying to get my last words out without fainting i told him we loved him and that he was so beautiful,that he changed my life forever, i kissed him so much and so did nathan he kissed his head and tried to hold him with me.He just went peacefuly what we wanted from the beginning but we never really knew how to prepare and here we are dealing with it.Nolan Alex Chisaakay-Soucy has made me a better person i miss him more than anyone could understand and when i say im alright im really not i know with time that maybe i will be alright but for now im missing him and i will be for a very loong time.I love him

A new Place

This is our new blog where i will be writing to all of you about what's going in our life after the loss of our Nolan.This will be a safe place for me to express my feelings as well.I dont want Nolans blog to be a place of anger and sorrow so this is it!