2 weeks without Hannah....

Its been 2 weeks since Hannah has passed away...... the days are just going by, for the most part i am good i have my days when my thoughts get the best of me i wonder if i should've intervene with what was happening tell them to do whatever they had to intubate her, tracheotomy whatever it took to keep her alive as my thoughts keep racing the other half of my thoughts jump in and remind me that isn't what i wanted for Hannah i couldn't live with myself seeing her everyday with a whole in her throat getting all her breathing support from a vent machine for some thats enough for them and i don't knock them for there choice but for me and mines i couldn't keep holding on to her like that i wanted Hannah to be a part of our family not just a member of our family.  As much as i miss her i am happy for her no more suffering, no more needles and being poked at, no test, no more being held to one area because of machines attached to her...Hannah is free, free from all of it and that brings a warm feeling to my heart.


When Hannah was alive a lot of kevin's time and mine was devoted to Hannah unfortunately our two other girls were getting the short end of the stick we weren't able to do the things the kids wanted to do for summer especially my oldest Kairi.  Kairi was old enough to know what was going on with a lot of understanding but she wanted her time too she wanted to go places and do things i tried as much as i can to do with her i took her to coney island, sesame place, and some family pool parties or have family do things with her. what makes it harder is that i only have Kairi for half the summer then she goes to her dad for the other half.  Hannah was in the hospital the whole summer so when she passed away after my mind was clear i thought now i can take Kairi to the beach like she's been asking the whole summer to go.  We decided to go to beach today only the forecast shows rain for the rest of the week and Kairi leaves tomorrow so we did the next best thing WE WENT TO MEDIEVAL TIMES!!!! we had a great time i've never been there until today, Kevin and i definitely going back great food, great show *whispering* Handsome knights what more can i ask for? oh and most importantly Kairi had a great time even leah enjoyed the shows rooting for the yellow side waving her banner it felt good to be out and not worrying about Hannah or trying to hurry whatever we are doing so i can get back to Hannah's side or looking at my phone to see if i missed the hospitals call.

go yellow team!!!!

excuse my uhhh clevage smh. wish kev would've seen that.

Footprints of Hannah with me everyday.

Through all this i respect family time so much more its definitely important it was important before but now it's like a must i don't care how busy our life gets when its time for family time everyone better be there thats more for kevin and i right now since the kids are young they have no choice.  I appreciate having them around me more i'm possessive now i don't want to let them out my sight lol.  For some reason Leah is really clingy she doesn't let me out her sight..at all lol its like she's my protector i love it though i kinda use her too when i miss Hannah or wish i could kiss her little soft cheeks  i start kissing and hugging up on leah, the love i cant give to Hannah anymore physically i give it to leah and Kairi (when Kairi lets me she's hormonal lol).  My only regret is i never got to take a picture with all of my girls together and a family portrait with all of us together other then that i am content.

The Funeral and the day after

The weekend was going by so slow and just like that today is tuesday.  Yesterday was Hannah's funeral she looked so beautiful with her purple little headband and her cream gown made just for her (from Isaiah's promise).  As i walked in the funeral home my heart started racing i was so scared about seeing Hannah again in a coffin knowing this would be the last time i ever see her.  I walked over to her and automatically started crying she looked so beautiful, so peaceful she took my breathe away.  I just stood there watching my little angel wishing this wasn't my last time seeing her little face (on earth anyway).  Family and friends starting arriving to see Hannah a lot of tears and emotions, Dr. Jamie Beversdorf, Susan Cohen, Denise a colleague of Dr. Kipel who was one of Hannah's cardiologist very sweet women, another women came with Denise from there office unfortunately i didn't get her name :-(, of course our parents were there, my sister Adrianne, Kevin's brother Stephan, Kevin's cousins and there significant other, a good friend of mine from church Jennifer came with her partner ,  god parents, more family etc.  A little after 10am the service was ready to start,  Pastor Bell who came to see Hannah a few times in the hospital and who also is a great speaker was to speak i was pleasantly surprised when i seen our Pastor Pastor Tyrone Stevenson come in to speak last i heard he was unable to attend Hannah's service he had a funeral out of town to attend too, i understood it was ok but here he was to speak at Hannah's funeral :-).


Pastor Stevenson gave such a great word it was moving, uplifting, just what we needed he brought added light to Hannah's life out of all the great things he said the one thing that stuck out for me was her time he explained that even though Hannah only lived for 2 months the time was still so much longer then the eye can see in hours she lived for 1,460.97, in minutes 87,658.1, in seconds 5,259,490 my heart and face smiled 5 billion seconds that sounds so much longer then 2 months huh? in that 5 billion plus seconds Hannah touched so many life's and people i will never forget that the hours, minutes and me  my most favorite the seconds of Hannah's life.   My oldest Kairi wrote a letter to Hannah and wanted to read it to everyone before she placed the letter with Hannah her words were on point she spoke about God taking Hannah's pain away and Hannah watching over her big sisters i was so proud to hear kairi speak about her baby sister.  Last but not least kevin spoke he wrote Hannah a beautiful poem it brought tears to my eyes he's always been good with words and poems he proved that once again with his poem.

After all the the beautiful words about Hannah was over it was time for everyone to pay there last respects before they......closed the casket *sigh* that was the hardest part i didn't want them to close it i wanted to run over to her and save her take her out of that box where she didn't belong and protect her like i've been doing for the past 11 months (pregnancy and birth) but i knew that the body i saw laying there wasn't Hannah anymore it was just her shell Hannah had moved on to a better place, a place i pray to go one day (no time soon of course ;-) lol).  We drove to the burial ground the whole time i was wondering how do they transport her little box? i wouldn't call it a casket it was so small, we arrived at the burial ground as we drove through the burial ground i looked at the different head stones and read all the different dates some family sites, some were babies, there were all different kinds. they set on her  site as we all looked at the casket one more time, my little sister wanted me to open the casket one more time but i couldn't take having to open  see her there and watching them close it again plus it was sunny and bright outside i didn't want the sun to hurt Hannah's eyes, still being a protective mom.  After everything was done my family and friends we went to eat we laughed we talked we shared stories i felt good. I felt my job was done.


About 25 years ago my mother buried my baby sister who was a little over a year, when we went to the funeral home a day after Hannah passed away i mentioned to them my mom had buried a child in new jersey, after doing some research we found out we were able to use the same land there was room for hannah since my little sister casket was small and of course Hannah's is small too.  This blew my mind because who knew donkey years later i would be 1. burying my own child 2. it would be in the same spot my sister was buried, life is so unpredictable and funny i'm sure my mother never thought the spot she buried her daughter would be the spot she comes too to bury her granddaughter too, but i tell who did know our heavenly father he knew all this would come together the way it did.  Before Hannah's passing i never visited my sister grave it was something we never did for whatever reason.  Hannah isn't alone she has her auntie with her that makes me feel a little better.  My little sister didn't have a tombstone so kevin and i decided to get a 2 in 1 for both of them i'm thinking of something with intwined hearts with there names on it.

Today was a ok day i didn't feel like doing much, it took all day just to write this post.  i would come and go one minute i was interacting with the family feeling good then the next minute i would be sad and can stop thinking about Hannah.  After the funeral service my pastor said kevin and i would need counseling when he first said i was no we will be fine ( i thought it i didn't say it to him) but after today i know for sure i am going to need it i cant control the emotions i go through its up and down  and i am not use to this i usually control my emotions you wouldn't even know i'm upset about things but this i feel like i'm wearing it on my heart and shoulders i know its going to take time but how much time? no one knows just gotta go through the motion.  The good thing is i do talk to kevin and express when i'm hurting and my feelings i've learned holding things in and letting it fester isn't good.  One day at a time with god's mercy and strength it will all work out for the good.

Sing softly the song of my angel

Sing softly the song of my angel
Let the angel let you sleep for my angel
in her wisdom has begun her angel song.

Sing softly the songs of my angel
It holds the angel power, it lets the
angel let you laugh, it lets the angel
make you cry.

Sing softly the song of my angel
In my angel you must trust my angel only
cares for you. My angel wont let anyone hurt you.

When you are lonely just close your eyes, sing softly
 the song of my angel for my angel is with you.

So sing softly the song of my angel
let my angel let you sleep for my angel
in her wisdom has begun her angel song.
By Kevin Joseph

Joshua 1:9 NLT
This is my command-Be strong and courageous! Do not be afraid
or discouraged.  For the LORD your God is with you wherever you go. Amen.

Its almost here

Hannah's funerals service will be held tomorrow. The viewing is from 9am-10am, the service following right after and she will be laid to rest.  I keep asking God for strength and remembering all the t-18 mommies who had to go through this.  Reminding myself how strong i am because of Hannah, reminding myself i have two beautiful girls who need me now more then ever. A day at a time remind myself.  Over the weekend another mom whose son passed away from trisomy 18 did a balloon release for all the babies who have passed on this year as i was looking through the pictures and names there was Hannah's beautiful name and Balloon my tears came down but not because i was sad it was happy tears for this beautiful gesture of the mother and the balloon reminded how free Hannah is.

Today i go buy our clothes for tomorrow i don't want to face this day but i know i have too, its like i do want to face it so i see Hannah's face again but then i don't because that will be the last time i see her face.  So much up and downs but with god strength i will be fine.  Right now this is a open wound and it hurts like hell i have keep it clean take care of it so it doesn't get infected i have to make sure it heals without a nasty scar.  One step at a time.

Hannahs balloon i love the four hearts, theres my heart, kevins,kairi and Kaliyahs heart we all love you very much.

Funeral service

Santangelo Funeral Home

635 Mcbride ave Woodland park, New jersey

viewing from 9am-10pm

service following right after.

REALITY SLOWLY SETTING IN

I woke up today not feeling the best i feel like everyday i start feeling the reality i cried four times today the last one was totally unexpected, we were in Walgreens putting together Hannah's collage for her funeral and i seen a picture of Hannah and her dad i love that picture i said "awwww look at you too" then it hit me Hannah is gone and the tears started kevin held me and patiently waited for me to let it all out after my cry i continued with what we were doing.   Right now its a lot of phone calls trying to plan this funeral we can only do this right one time for Hannah and she deserves the best, unfortunately we didn't think Hannah would have passed away so suddenly or so soon so we didn't get to put away money or plan a funeral so now we have to plan one in a weekend *sigh* no time to grieve right now gotta get clothes for the girls,kevin and myself, luckily during my pregnancy a organization called Isaiah's promise had sent us some beautiful dresses for Hannah so she's all set i don't think i could've handled having to buy her a burial dress.... planning this is hard enough.  I know my baby girl is at peace and that makes me happy but i miss her so much i keep touching a picture of her face wishing it was her face.  Like my older sister Onica said remember all the good times, all the things that made me smile about Hannah some times that helps and other times it makes me miss her more.  Im just trying to take it a hour at a time anything else is too fast for me right now.

Kevin is being the amazing man he always is, when it gets too much for me he takes over. He tries his hardest to make me happy right now, like this morning OMG he had to take the picture of Hannah's footprint that was made for us at the hospital the day she was passing they put it in a frame that said "Mom" he accidentally dropped the frame and it broke into pieces i just hurt the break i looked around and it was in pieces  it was like Hannah passing away all over again my heart broke with the frame i was so hurt and furious asking why would he put the frame there? and i knew it was going to happen? i wasn't nice. He came back from the funeral home but they called and wanted us to come back together so i went out with him i sat in the passenger seat and felt i was sitting on something when i pulled it out it was a new frame i looked at it and put it down i wasn't happy i put down on his sit  he got in and said "here" i said  "i don't want a new one u bought i want the one that was given to me" he said "it is" apparently he felt so bad for breaking the frame he called susan the women who made it for me told her what happened he stopped by the hospital and she made me a new one *tear* i felt so stupid and mean i apologized gave him a kiss and thanked him so much i felt a breath of fresh air the fact he went his way out to do that just made me fall in love with him all over again, i whispered to myself and said Hannah you have the best dad in the whole wide world.    After that happening I was glad the first two days were me and kev consoling people, if it was a day like today i don't think i would of been able to console anyone my emotions are all over the place.  Its hard to talk about her or see her picture i know these are all natural feelings i just have to get use to them and let the process take its course one hour at a time.



I read this scripture on my churches  F.B page Hope touch NYC and it touched my heart
Jeremiah 31:13- I will turn their mourning into gladness; I will give them comfort and
 joy instead of sorrow.   I hold god to his word....

An Angel in the sky....

Yesterday was another routined day we had a noon meeting with the doctors,nursing staff and palliative care to discuss what our next plan was for Hannah.  kevin and i woke up did our in the bed morning talk woke the kids up took our showers ate breakfast and we were off to see Hannah.  As we walked in the ward he heard alarms going off as we walked closer to Hannah's room the blinds were pulled i walked in first to see the nurses putting in a new IV on Hannah, apparently she went on a rampage and pulled out her IV and her feeding tube pulling out her feeding tube caused her to aspirate .  The nurse told me Hannah had a rough night she was very inconsolable they gave morphine it worked for a brief moment  they also had to give her Ativan to calm down.  At noon as we prepared for our meeting Hannah de-sated and everyone rushed to her bedside as i looked on the monitor at her was 9 my heart dropped the started calling for help they gave her extra oxygen through the by-pap i stared at the monitored begging for her numbers to come up, slowly but surely her numbers came but it was still low in the 70's sometimes hitting 80's, the doctors started her on morphine to relax her so she wouldn't  struggle to breathe.

Dr.Beversdorf came in and said "i think Hannah is trying to tell us something" i walked over to Hannah and instantly I started crying because i knew what was next.  The doctors told us to start calling our Pastor and family and get them here as soon as possible in the meantime they upped her oxygen 100% and rate to 30, kevin and i cried, we prayed and we cried some more after we got our cry out alone together we started making plans we asked for our pastor Pastor Tyrone Stevenson to be called to get her blessed,both moms were called,sisters,brother,god parents Shenna and Junior all those who played a important part in Hannah's life.  Since everyone lived in NYC and we live in NJ it took time to get everyone there not everyone drives as (honestly i didn't mind they could've taken there sweet time i wasn't ready to face what was about to happen).  My pastor saw that and decided we should make a time to get this started tell the family that and leave it at that after.  Kevin and i looked at the time it was 3:35pm i couldn't think to make decisions so kevin was the one calling our shot and i agreed with it, we set the time at 5pm, about 10mins later Dr.Beversdorf came in and said we shouldn't prolong this too long it isn't fair for Hannah 4:45pm was the new time. I was thinking to myself "why are we pushing up the time what is 15mins give my baby her 15 mins" but i knew it wasn't fair to Hannah and time did matter.  Before we knew it is 4:45pm they came in with a morphine drip to give continuous. At 5:15pm they started turning down the amount of oxygen is she was getting, all monitors were turned off so we could focus our attention on Hannah, our family started arriving just in time as kevin held her close and through our tears we closely watched.

At 5:35pm Kevin broke down crying.. i knew she was gone. Dr.Beversdorf walked over to kevin she listened with her stethoscope and confirmed she had passed away.  I could not believe it happened so quick i didn't expect for it to be over so soon, i knew in my heart she was gonna keep holding on that she would have surprised as with a miracle and hold her own.....that didn't happen my beloved angel went on to a better place she went on to be with her Heavenly Father in Heaven no tubes, no machines, no IV's no more blood draws she is free from all her pain MY GOD this bring so much joy to my heart, yes i will miss her truly without a doubt but her spirit lives with me for the rest of my life, her memories, her sweet smell will always be with me.  She was and now is truly an angel.

I am so thankful for the staff at Hackensack University Hospital the nurse Danielle took care of our baby so well even after Hannah left her shell the nurse still treated her like she was there as she changed her pamper she spoke to Hannah letting her know everything she was doing, she made her bed, swaddled her in her blanket put on her little hat and probed her up like the little princess she is. Ooooh Hannah looked so peaceful she looked as if she was a sleeping beauty with all that stuff was off her face what a beauty she is i couldn't stop looking at her my heart gets warm just thinking about it. I want to thank Susan Cohen and Dr. Jamie Beversdorf for there moral support  you guys treated us like family we are family now and forever you were there with us every step of the way helping us with decisions reassuring us that we can do this.  The child life team Rebecca, Alicia, Stephanie and those i didn't get to meet but had apart in Kairi's life thank you SO much you guys made it easier for us easy to explain to Kairi what was going on when we didn't have the words to explain you guys kept her focus on being a kid and taking on the burden of what was going on with Hannah. The job you women do take a  special type of people to do it and you are fit for the job without a doubt we will always keep in touch with you guys. For all the staff and Doctors theres so many of you guys i want thank you all who were apart of Hannah's life we were able to get this far because of you.

Our family thank you you made her going away day amazing it was great to look around and see all of you there with us we cried but mostly we laughed i am so happy about that i don't want Hannah's passing to be about mourning i want it to be a celebration of a little girl who fought from beginning to the end against all her odds she fought and she still came out a winner. I am so proud of you Hannah mommy and daddy love you so much you are forever in our hearts and i promise we will make you proud this isn't the end its the opposite it s just the beginning.... R.I.P Hannah Gabrielle Joseph. Sunrise 5/16/2012- Sunset 7/25/2012.

Genesis 28:15
Behold, I am with you and will keep you where ever you go,
and will bring you back to this land; for i will not leave you until
i have done what i have spoken to you.

TRYING TO LET GO AND LET GOD.....

Today we heard back from the surgeon he said its a no his reasons were reasonable the muscles in her heart are thick, while doing the VSD repair they stop the heart the surgeon is worried once he starts the heart the heart will pump stiffly which can eventually cause lung issues and make the heart weaker, he also feels it would not benefit her by doing the surgery.  I asked him what he suggested we do he suggested we let nature run its course..... as i walked back to Hannah's room i felt the same calmness i always feel when we get bad news or what we think is bad news for a second i felt tears forming as i looked at Hannah to think one day she wont be here, same time the nurse came in to change her sheets and asked would i like to hold her? ( i haven't held hannah since she went to columbia so for about a month) of course i want to hold my baby girl especially after talking to the doctor, i held her close to me took in her smell played with her hands and whispered god is in control of your life.

The doctor came in and asked what my plan was i told her i wanted to get Hannah off the by-pap back on her nasal cannula and home and that is the plan.  This Evening Hannah's cardiologist Dr. Kipel came in to talk to me he also had gottwn the news that the surgeon Dr. Malhotra decided not to do the surgery i love Dr. Kipel he  is an amazing cardiologist compassionate and always honest with us he spoke about what the surgeon had said and he heard about my plan to get Hannah home he expressed to me that he wanted to reach out to one more hospital and present Hannah's case to another surgeon as i'm listening to him i'm thinking i just accepted the fact that surgery wasn't happening..i was ok with that now he saying to talk to another surgeon 1. I don't want to get my hopes high 2. Is surgery the best idea for Hannah?  I want to try and give Hannah a fair chance at life but i don't want to lose my time with her i don't want to send her off to surgery and she doesn't make it at the same time i don't to bring her home and watch her slowly die... i don't know what to do, i can say i'm going to give it to god but that doesn't mean i wont still think about or wonder what's going to happen.  My oldest daughter's dad said something that's been sticking with me since he said it, he said "you cant do both its either you worry or you give it to god but you cant say you give it to god and then worry its doesn't work like that" it is so true but i don't know how to just give this to god, this is the biggest decision i'm sure i will ever have to make in my life and i want to make the best decision for Hannah *sighs* if only i knew what that was.

Tonight Kev and i are gonna sat talked about all out possibilities,fears,expectations.  I am so happy to have him by side going through this i'm sure i said this before and i'm going to say it again i couldn't see me going through with no one else but Kevin, when i'm being negativity he always remind me of the positive. Tomorrow we have a meeting with the attending doctors, cardiologist, and palliative care to figure what it is we should do, how can we get to a decision, what is best for Hannah, and should we entertain getting a third opinion. thank you all for the prayers they continue to give my family strength.

Romans 10:10(NKJV)
For with the heart one believes unto righteousness, and with the mouth confession is made unto salvation. For the scripture said, whoever believes on him will not be put to shame. AMEN.

Christmas In July

So all weekend Kairi couldn't wait until monday (today) Hackensack University Hospital is having a Christmas in July party for the kids in the pediatric ward and the siblings (awwwww that is so nice) Kairi was too excited.  My baby girl came back with a ipod nano she told them thats what she wanted for christmas and they told santa, santa also bought something for leah a baby doll, kairi also made earrings, they drew a character picture of her.  I am happy for the child life support they are awesome they keep Kairi entertained while i tend to Hannah, those girls have so much patience and always joyful   special women they are. God bless the whole child life team.


Today was our appointment with the surgeon at Newark Beth Israel Hospital it went fairly well, he had a good spirit i know we found our surgeon its not final yet he said he needs to go over her records and review her echo video to see what the damage is and if there is anything that could cause complications and talk to his team to make sure majority is on board he said he will get back to us by the end of the week.  In the meantime Hannah is doing well besides the fever that keeps coming and going and some withdrawal from being off the fentanyl which they give her morphine or Ativan to help with the withdrawal she's doing good no de-sats so thats good.  It was a ok monday tonight i realized i lost sight of what is really important to me, i need to stick close to god and let him lead my life and stop trying to lead my own life i'm only gonna lead myself into self destruction.  I want to learn to mediate when i feel like i wanna go to a peaceful place just close my eyes and mediate thats what i need *whooo sa* *peace* thats what i need.  Tonights post is sort and sweet  i will keep you guys posted about the surgeon and of course about my Hannah Banna. Goodnight.