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.


Ayleen29 said...

Hi, my name is Karina. I've been keeping up with your family and baby for a bit now. I wrote to you on the trisomy 18 support page but I saw that you had other pages going on. Anyways, I had to build a lot of courage to talk to you for this is my first time ever trying to have any contact with another person with a trisomy 18 baby. I had my baby girl Ayleen in October of last year and she's still with me!! she'll be exactly 6 months tomorrow. I ran into some of your youtube videos when i was about 8 months pregnant, when Ayleen got diagnosed. Since the beginning I felt a connection with you and your baby. After Ayleen was born I didn't research anything or keep up with anything anymore, i was too scared to find anything else. But a few weeks ago while checking my trisomy 18 support page, i somehow ran into yours. It was the weirdest thing because it was about the 5th page i looked at, and yours was just an accident, you had left a comment on someone else's page and I saw ur baby boys name.. Nolan and i thought, it can't be the same one.. but i clicked anyway on your page. And to my surprise it was yours!. I cried so much when i saw that Nolan had passed, and i still do every time i come to your page. For six months i've been trying to keep strong and i couldn't cry.. 2 minutes in your page made 6 months of sadness, anger, happiness, all come out at once. I couldn't stop crying, but i felt some release on my chest. I hope my comment doesn't bother you, i'm just going through a super hard time. The older my baby gets, the more scared I am.. i live in fear and i'm just looking for any type of advise, a glimpse of hope?!.. anything. Well i wanted to stop by and say that you're an inspiration to me and of course Nolan!! Thank you for everything you share, you have no idea the impact it has on me. I'm sorry for your loss, and thanks again for your blogs!.

PS i'm sorry if my message sounds like none sense.. I was just writing as things came to mind! :)
God bless you and your family,

Amanda said...

Hi Karina!
Thanks for your kind message, and congratulations on the birth of your miracle baby Ayleen.I bet she's just gorgeous.These babies are so amazing in everything they do...all the little things are huge milestones! Sorry my blog made you cry, i know i cried some when Nolan was here cause i knew his time wasnt forever even though i lived like he was going to stay forever.Just deep down it would surface that he could be gone oneday especially ever getting sick.I never really kept Nolan in huge a bubble, of course no one was aloud around him if they had sniffles, but i took him everywhere! i wanted him to experience life, he went swimming,he went to the zoo, he went grocery shopping,went to the river,played in the grass,the park, the malls you name it.Nolan had a normal life as much as possible. Im glad i did it that way.The only advise i have is live each day as it comes hun, day by day.Embrace your sweet baby girl (although i know you already are) just hug her a little tighter at night, snuggle a little longer. I know each time i would hear another child pass i would grab onto Nolan and just hold him for hours.I hopethis king of helps. just know there are lots of us momies just like you out there who have been where you are, including me.The anger,sadness...wondering why this happens? i have done it all, and im still doing.I miss him so sooo much. I know he is so proud of us.

Ayleen29 said...

Thank you so much for responding :). Last night i started to wonder on all these peoples pages and was amazed and surprised to see that most of what i've been feeling for all these months, most of these families feel that way too. Now i feel like i'm not crazy because i'm not the only one who feels this way or thinks the things i do. I have my family's unconditional support, they're the ones helping me out and doing what then can for Ayleen and I. I was close to graduating at the university but i had to leave that behind for now and my baby's dad isn't very helpful. A lot of times i feel so alone even though i got my family and i do believe that i felt that way because none of them could fully understand my pain and everything i'm going through trying to deal with my baby's health. But definitely reading about all these other fams makes me feel better in a way. You mentioned how you would take Nolan every where, I too take Ayleen everywhere... but a lot of times i feel like a bad mother because when people get close by to see her, all i can't think of is.. hopefully they don't notice she's sick!. I'm just so scared that people are going to judge her or make fun of her and so i guess that's my way for protecting her but i really don't want it to be that way, i wanna show her off but i just don't know how to get rid of these fears. Tomorrow is Ayleen's 6 months birthday and i'm planning on getting her a cake! so i'm excited for that! :) I have a question, what kind of medical interventions did you perform on Nolan? Ayleen has pretty much had none, she has been feeding from the bottle since she was in the hospital and always breathed on her own too. We were released just after two days of being born and so far she's had no health problems besides getting the sniffles the other day... but she's ok now. Up to now i've always opted for no medical interventions.. but I'd like to inform myself more of what other people did. I just don't want to feel like i didn't try to do anything for her. Well thank you so much for the message again! i really appreciate it :) Hope you and your family have a blessed day!!