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.