From the beginning…

I will post our blogs from the beginning of our 1st blog. This will take a while because we will post it from beginning to end… http://carlajoe.typepad.com/blog/

New Growth ~~ Mar 18, 2009 at 2:14 PM

As I sit and write today I do not know what my true feelings are anymore. I try so hard to be optimistic about Jody and our expected outcome. Optimistic in my mind more so then realistic, my heart holds on knowing that this precious angel that we have been gifted with has a very special quality that is need by a higher power.

Today my sorrow comes from our appointment with the specialist we had yesterday. He gave us our original diagnosis and something about his demeanor is comforting. I do not really know what it is, but yesterday I was so angry. We learned at 33 weeks Jody is a big boy, weighing 5 lbs 13 oz, he looks beautiful in the extorted images that we could see. As a mom and dad children are always beautiful, but each and every appointment gets harder to hear the outcome and harder to understand what is happening. A question I find myself asking lately is why us?

The torture of yesterday’s appointment was not seeing Jody’s enlarged kidneys, not confirming a miracle still has not been preformed, but learning that his heart now is surrounded by fluid. That means that our little guy is fighting so hard to stay with us in the warm confines of the womb. I am blessed to be able to cherish every kick and movement while he is still with us.

I tell myself that we have been chosen to be blessed with a child that will forever live in our minds. But more so will serve a purpose in his afterlife, far greater then what we ever imagined he will accomplish on earth.

This morning I woke up and just had a heavy heart, I find it difficult not to stay in bed all day with the blinds drawn. I just want to enable myself to wallow in self-pity, to cry all of the tears until I can cry no more. To just have time with Jody so I can tell him all about life, what green grass would feel like between his toes, the rush of a rollercoaster, all of the things he will never experience. Yesterday sitting in the back yard watching the dogs, Joe and I were talking about the new growth that you see all around us. Truly, I don’t want to see new leaves growing on the trees, confirming that life does go on while I just want it to stop.

For now I would like to tell you about Jody and the things that he does and does not like

  • He loves Tootsie rolls, when I eat a small tootsie roll he goes nuts, wiggling all around.
  • He loves his big brother, when Joey is talking or around he gives the hardest kicks.
  • He is soft and loving to Jennifer when she talks to him, and just gives her wiggles.
  • Jury is out on Daddy, I believe he does not like how warm dad’s hands are all the time. Because most of the time when he puts his hand on my belly, movement stops.
  • He does not like ultrasounds! He tries with all of his might to wiggle away from that wand which is probing into his space!

Just to give a little background… ~~Mar 18, 2009

Woops, maybe I should tell you a little bit about what has prompted this blog. On Feb. 4th we learned that our son we are expecting has a fatal condition, multicystic dysplastic kidney disease. Both of his kidneys are non-functioning and his lungs are underdeveloped. The 4th and the days that followed will always be fresh in our minds. Appointment after appointment I swear our file was stamped, FATAL. Sometimes I think it is on our foreheads in huge red letters.

We have so many things to share, we have a new outlook on life. You can travel with us though this blog, we know so many people are praying for us and have offered us strength throughout this. Now we would like to open a window into our world, you can virtually hold our hand through our journey and know what is going on.

We will fill in the gap from the 4th to today with our future posts.

Spiderman, Barney and McQueen… the lessons from a big brother ~~Mar 19, 2009

Just an fyi I am far from funny like Joe, so he may have to spend some time blogging in order to keep thing light hearted!

Our most recent experience….

We have known about Jody’s fatal condition for about 7 weeks and have received so much support and understanding from our friends, family, Joe’s clients and my colleges. Sometimes it feels like we share what is going on with us 100 times before we have to start over and tell about another devastating appointment. My mindset behind starting this blog, everyone listed above can know what is happening on a regular basis.

Every appointment I walk with mom’s intuition saying “We are going to hear good news today!” Apparently I DO NOT have any intuition at all! I have hopes, desires and in more then one way I refuse to believe the truth. I can tell you most defiantly I have my blinders on!

After 7 weeks we started sharing with our precious Joey that his brother will not be coming home. He‘s destiny is far beyond our reach. The first time he was told we were sitting in the car waiting to pick up Jennifer from school, he saw this little boy go by with a helmet and noted…

“hey that guy does not have a bike why does he have a helmet?”

You could literally see the wheels turning in his little 3 year-old mind, I was waiting, and he says “When I turn 4 I am getting a bike”

I answer “yes, when you turn 4!”

I must explain there are two things Joey associates with turning 4. First he will get a bike, second he and his brother will be going to the same school.

The conversation turned to his brother which he refers to as “My Baby Boy”. As he asked if his baby boy can come out now, I personally felt deflated. I was not the one with the strength to start the conversation. Joe so delicately said, “Joey, your brother is going to go to heaven”

Immediately Joey starts balling, insisting “I want my baby boy, I do not want him to go to heaven”

After he had said this about 8 times Joe goes over to him and wipes the huge tears that are streaming down his face.

Conversations such as this occur regularly as of late, every one is difficult, I feel like curling into a ball and never coming out. What 3 year-old should be expected to understand death, heaven or anything associated with it? Though I felt relief, I have felt like we were robbing him from enjoying his brother while he is still with us.

So yesterday, between “I want my brother” and “I do not want him to go to heaven” Joey taught his little brother about 3 things. He told him about Barney, a big giant purple dinosaur which sings, dances and just appears out of nowhere! Spiderman, which shoots stuff out of his hand, then the funniest one of all…. his exact words “Lighting McQueen the fastest, most famous race car in the WHOLE WHOLE world!”

It was funny listening to his description on the scary dinosaur, a man that acts like a spider in a spandex costume and the cute little race car! After each description he kisses my belly and fly’s off to where ever his little mind had decided to go!

We have a sense of peace knowing that Joey is now in the loop with the rest of the family, but the sense of helplessness does not end at each conversation. Decisions have been taken out of our hands and been placed into the hands of God, hands that we have never seen, that we must learn to trust and believe in. This has been the hardest part of our journey with Jody is knowing the decision is not ours; this is not something that doctors or Joe and I can change.

Tomorrow is going to be an especially difficult day. We will be going to Angels Cremation and Burials to discuss final details for Jody. It is strange to discuss since as I have been typing this he is wiggling and moving, full of life. Luckily, Joes parents will be with us, and we are strong. I will not forget to pack the box of tissues in my purse since Jennifer will not be there to follow us around. Some decisions just should not have to be made.

On a side note (Sorry I know this is long). We have been in touch with a wonderful photographer from Now I Lay Me Down To Sleep Foundation. She has just been a blessing, last week she came to our home  to take maternity photos and made us the most beautiful video of the images. I will make sure that we have permission to post the video on this blog before posting and give an update soon!

This maternity video was done for us by Angelina with Cherry Moon Photography, she is a photographer and owner. We have been blessed to have Angelina with us on our journey, she will be with us the day that Jody is born to capture the few images of him while his sprit is on this earth. As I told her recently, images that she captures the day of his birth will be with us for a lifetime. She volunteers her talents and resources to serve families that loose a child before or after birth. She has a beautiful blog which she has written about her time with the Now I lay Me Down To Sleep Foundation you can view it at http://www.cherrymoonphotography.com/.

Added 12-10-09 we can not post a video just yet, the link to see Jody’s memorial tribute is http://www.youtube.com/watch?v=GrlQLgCtvzI

Kaleidoscope ~~Mar 26, 2009

Written on Friday, March 20, 2009

Thursday evening we were all home, Joe and I were on the phone with a new friend that we have bonded with, she and her husband have been through a similar experience we are going through. While we are talking we hear a crash, the sound of breaking glass, everyone ran to the kitchen, Jennifer looked like she had done something wrong, Joey investigated a mess he did not create, and Joe ran for a broom. Jennifer picked up her kaleidoscope and sadly announced that it was broken. She has had the thing for years, a gift from Uncle Mike, and she has always valued it as precious. Maybe because of the heavy gold exterior or the beautiful box she places back in when she is done tinkering with it, I just don’t know.

While Joe cleaned up the glass, I told Jennifer “I bet I can fix it.”

I took it from her and made the immediate assessment that “I can not fix it, but it is still pretty” Joey and I sat there looking through the tube at the shattered insides and I thought to myself this is how I feel. Each time you look you see a different image in the refection of the tiny hidden mirrors. Bright colors coupled with the twisting motion, makes you feel like a kid. But today I thought this looks like our life. The beautiful colors that once spun in our world, the hurried anticipation of Jody’s arrival, seem like Jennifer’s kaleidoscope. Unable to turn, the bright colors are no longer reflected, the skewed perspective of the illusion is all that exists.  Now when you look into a window of our world you will see two adults felling cheated and deprived of our future son with. Our hearts are heavy everyday, but we do find utter enjoyment in our kids and still laugh.

So here I have Jennifer’s kaleidoscope and think to myself it use to be so beautiful. Now it is shattered mirrors, and dark dull image inside no way to recover the beauty that one could once see.

I went a looked for a poem, thinking someone must have felt the same way. I am no poet, so I will rely on the creativeness of someone else. Guess what, I found two… AMAZING!!!!  This is the one that I liked…

Kaleidoscope

by Danielle Steel

the first,

shimmering moment

of life,

like a diamond

in the sea,

glittering

in the noonday

sun,

brightly lit

and glowing

flame,

a brand new name,

a shining light,

then gentle twist

and darkest night

comes

for the first

time,

then happy rhymes

and gentle songs,

hearts that belong

until one stands

alone,

from brightest

dawn

to deepest dusk,

from morning sun

to twilight dreams,

fantastic schemes,

and lives

that sometimes

go awry,

such shining

hopes,

such sudden turns,

from bright

to dark

from grim

to grand

from joy

to sorrow,

always waiting

for tomorrow

and a twist

of fate,

a ray of hope…

with the faintest

sleight of hand,

the alteration

of all life’s

schemes

and all its scope…

all with one tiny turn

of life’s kaleidoscope.

It is easy for us to get lost in the moment, or wish things were different. On this same night Joey was dancing around, happy about something we had told him. He is too cute shaking his fanny to a beat that only exists in his mind. I found myself laughing at his dance moves as he set a hasty pace to get back upstairs with Jennifer, once I could not see him. I realized I had tears streaming down my cheeks, as he was doing his jig, I thought to myself “we could have two of him”. Don’t get me wrong we will have two beautiful sons once Jody arrives. But we will never see his jig, hear his laugh or see the life in his eyes the way we get to see Joey.

Inducing ~~ Mar 31, 2009

On Friday we had an appointment with our OB. It was a bittersweet appointment I guess you could say. Our OB Dr. Adams, is a kind woman, she is very sincere and truly cares about us. She is the same Dr. that delivered Joey in 05’, so she is familiar with us and our family. Going into the appointment Joe and I told ourselves that we were going to be strong, and more or less demand that they induce me. Our mindset is that our time is getting shorter with each passing day, the longer we wait for his arrival the less of a chance that he will be alive when he is born due to a potential cord accident.

As parents, our hopes have gone from having a healthy baby, to the initial concern back in December that Jody could have Downs Syndrome, to learning on February 4th of his condition and praying for a miracle to heal Jody’s kidneys and now just holding out hope that he will be alive with us just for minuets after he is born. No parent should be expected to shower their baby with a lifetime of love right after delivery, but we will should he survive delivery. Our hearts are big, our love is strong, and we know this is something that we can do.

On Friday our Dr. agreed that we could be induced after 36 weeks which could be the week of  April 6th. Jody could come into this world four weeks early and be with us only for a few minutes. She also explained why she has been so opposed to induction earlier. Apparently, when induced labor is more traumatic on the baby, if we had any hopes in seeing our Angel we would want to wait. Plus she knows his lungs will never develop, but by waiting until 36 weeks he may survive longer. That does mean he has to hold out for another week plus and hopefully be strong enough to survive though labor. But in the deepest part of my heart I know that he is fighting to meet us as much as we are fighting to meet him.

She did also say “he is a fighter”, then she followed with “He has far exceeded my expectation, I did not expect he would make it this far”.

We know by pushing to have him arrive, we are shortening his days with us. The day we go in regardless of if we schedule it or Jody makes up his own mind to arrive, will not be a day filled with peace. We have eagerly anticipated this little boy’s arrival, but what we dread is possibly holding our son and watching him pass. Believe me we know it is enviable, but to have him slip away in our arms, whoever’s arms it is,  is just unimaginable to us.

Also on Friday, Joe and I went to St. Anne’s to pick up readings and songs that we can play at Jody’s memorial service. I spoke with Father Tim last week, and he praised us for our strength and courage, he also indicated that we can go in at anytime to retrieve the items he will leave for us. As soon as we arrived at church, Joe and I went in and said a prayer, it was empty with the exception of a couple people milling around, we went to the first row, got on our knees and prayed for the only hope we have left. On our way out we stopped to pick up the readings, little did we know the office is closed on Friday’s. I had to let out a little sigh, we were meant to go kneel before Him and ask for time with Jody. There is a reason we went on Friday rather then any other day last week. Leaving Joe said to me, “I asked Him for a window of time with Jody.” All that I could say without crying was “me too”, but I asked for more, more then one person should ask for, I prayed for that window, but also prayed that He embrace our son, shoulder his pain, I prayed that if Jody does not make it to us that we not be bitter or angry. I also prayed for all of you, who walk this journey with us, it takes strength and courage on your part.

As of now, we don’t know what day our Angel will be joining us, all that we know is our time with him is getting shorter and shorter.  Every day is a difficult day, every day is a day filled with sad emotions.  We are enjoying the little movements, the big kicks and the tumbles he offers.  Because we realize this may in fact be all we have.

So, we share this update with you, so you our friends and family can look though our window, into our worlds are we go though this difficult time.

I’m not ready for that day… ~~Mar 31, 2009 at 6:38 PM

Our turbulent day…..

For the last couple of days Carla has been having some contractions. Some of them have been an hour apart, some of them have been more frequent. When I spoke to Carla earlier this morning I asked for a contraction update, as of 7:00 this morning we were contraction free. So the day started off well.

Today I had our annual appointment with our accountant to drop of our taxes for 2008. During the appointment he asked how we were doing and I told him “Not well”. In sharing our news about Jody I got very emotional, everyday really is very emotional to be perfectly honest with you. What would have usually been a 15 minute appointment turned into an hour long appointment. It is not an easy topic, one that you have a brief discussion on and then say, Ok, now back to your taxes. When we finished the appointment, Neil, our accountant, walked around his desk and came over to me and gave me a great big hug. I can tell you, he has never done that before…

After leaving the appointment, I called Carla to share with her my visit with Neil. I asked her if she would like to have lunch as I was half way to Scottsdale anyways. We had a tasty lunch, talked much of Jody and how we just wish we could have had a healthy pregnancy. We so wanted to bring this little boy home. We talked about possibly being induced sometime next week with fear and excitement. I dropped Carla off at her office and headed back to work.

Carla called me about 1:00 and said, “Joe I’m having a lot of contractions”. She was noting that the contractions where coming about six minutes apart. We decided if they where going to continue, we would contact our OB Dr. Adams. Needless to say, they continued. Carla called Dr. Adam’s and she could see us at 3:00. We obtain this appointment just before 2:00, our doctor has been great in giving us very special and custom care. My head starts racing!! Are we in labor? This is what we wanted, Right? But wait, if we are in labor this could be our last day with Jody!

Suddenly I realized I’m not sure if this is what we wanted. My emotions are torn! On one hand I want the god awful pain my wife is living with to end, pain caused in part to carrying a baby with no amniotic fluid. But on the other, the very selfish other hand, I am not ready to say good bye to my little boy. From the moment we found out we were having a little boy, I was floating. Two son’s, I was going be the Daddy of two beautiful little boys… God was I floating! Now here we are today, CONTRACTIONS…. I realized today, I am NOT ready for Jody’s last day!

I called Janice, Jody’s godmother and told her we were going to the doctor’s and to be ready in case we had to go to the hospital for delivery. We asked Brian and Janice if they would be Jody’s godparents well before we knew, what we now know. We couldn’t think of couple who loves the children we already have more, therefore we knew they would be great godparents to Jody. They want to be present right after his delivery, whether he survives or not.. So if we are able to enjoy those precious few moments with Jody, they can too. We needed to make sure my parents would be there as well as our beautiful daughter, Jennifer.

My heart is racing as I head to the appointment. If my heart is racing, I can’t imagine what is going on with Carla’s. We arrive at the same time, they get us into a room directly. They check for a fetal heart beat, it’s there! Whew, Carla was tracking the contractions so intensely, and lost track of his movements. Now Carla’s blood pressure…. 160 over what? She never has high blood pressure.

Dr. Adam’s come’s in gives Carla an exam and tells us we are not in labor. Now we can begin to swallow that huge lump in our throats. They will not allow us to leave until Carla’s bp comes down. In time, the bp is down to 112 over whatever, my attention to detail right now isn’t a high point.

At home, I turn to Carla and I say, “I am so glad we are home at this very moment and not at the hospital”, she agrees. Yes, we want to induce and No, we don’t want to induce. We are afraid of a possible cord accident if we carry much longer, but we are also afraid of him not surviving delivery. Someone please tell me the bright side of this?

Yesterday I read a poem that Carla forwarded to an old friend of mine who had lost a child 13 years ago. It was a beautiful poem written from a child who had past away to his mother. After reading to poem, I went over to Carla who was laying down with her feet up, knelt down next to her and said “I am sorry you will never hear our precious angel say Mommy to you”, we both began to weep. She said to me “I am sorry you will never hear our precious angel say Daddy to you”, we both weep some more.

Everyday is an emotional one! I am glad this day end’s with our beautiful baby boy still with us.

I am not ready for “That day” just yet…

I truly believe, I never will be…

But sadly, That day is coming anyways, thank God its just not today….

Moments in time… ~~Apr 2, 2009 at 6:57 AM

I am so proud of Joe for posting his first insert for the blog. It can be so very difficult to sit down and write about everything that has happened. I am sure that he will pour his heart out more freely now!

I wanted to thank everyone for the wonderful support, thought and prayers that they have offered for Jody and our family. We are so very blessed to have so many people walk with us though our joy and grief.

So many people have told us that we are strong, unfortunately most days, strong is not a word that I would use to describe me personally. I wake up each morning with doubts and fears. Before getting out of bed I lay there, sometimes for almost an hour until Jody moves. We have been tracking his movements incase at some point they stop. If they do that would induce me immediately because he would have expired.

I am filled with fear and doubt that surprises me. Though I guess I don’t know what we can handle until the day comes. But much like Joe said in his post, we are ready, we have been asking to be induced, but really we will NEVER be ready for that day. The day our son is brought into this world is the day his spirit will leave his earthly body.

A little story that I think about so often happened while putting our Christmas tree up this year. We were almost done when Jennifer announced “ I can wait for Christmas next year.” Joe and I were perplexed. We thought because we would not be going to Grandma’s and Grandpa’s on Christmas eve this year. Finally one of us asked her “why.” Her response was “because next year it will be all 5 of us.” Our hearts melted, here she wanted to speed up 08’ so that she could have her brother/sister with her the following Christmas.

On Dec. 8th we found out Jody is a BOY! Jennifer and I wanted a little girl, and Joe obviously wanted a boy. Jennifer went with us the day we found out, and well we can say she looked a deflated when I announced he was a boy! Her first response was “No it’s not”, the ultrasound tech confirmed that Jody is in fact a boy! Afterward she told me “Mom you can always try again!” Even though she was disappointed it did not change the excitement about having another baby in the house.

In Feb. after we found out about Jody’s condition, we had a ton of appointments. One was at NICU at Banner Desert Hospital. The doctor gave us a tour of the unit and she kept saying “this is where your baby will be”, usually echogenic kidneys are nothing for concern in and of itself, we would deliver there as a precaution. During the tour Joe let himself believe Jody was going to be born there in the NICU. He let his mind believe, here is a doctor who knows Jody will survive, and got caught up in believing that while we took the tour. For just a moment in time it felt good knowing our baby would be coming home. I on the other hand just said “Ok” during the tour knowing she was mistaken, angry she was giving us hope when we had non.

Walking through that day, we were able to see miracles. Not the one we had been asking for, but other parents beautiful baby’s that entered the world with little hope. One little girl, I can still see here now, was so stunning. Generally, it is hard to say a premature baby is beautiful. But that day we saw beauty in all of those infants. We were blessed in knowing that prayers had been answered for those families who had their children there. After our tour, the doctor actually ready our entire file. She then figured out that maybe she should not have taken us on a tour that day. She did indicated the MCDK was a fatal condition and encouraged us not to make any rash decisions on account of my health, Our child was not “viable”, therefore her concern was for me. We left that appointment like so many others, our hopes were fading, reality was setting in that Jody was not going to be here with us this Christmas.

I am still betting on Jody, he is a feisty little guy, and he will be there to meet us soon. I have faith to believe that even though we will not have the miracle like the parents with children in the NICU. Seeing Jody alive will be our miracle, no matter how long he lives, those moment will be precious.

All of the emotions… ~~  Apr 7, 2009 at 12:59 PM

Today and the next several days are preparation day for Joe and I, we are trying to tie up loose ends with work, home and everything else. Last Friday we spent the day “getting our house in order”.  We are trying to be as ready as we can be for Jody’s arrival.

I find myself emotional at points throughout the day and try very hard to hide the ache in my heart and the never ending sick feeling at the bottom of my stomach. In thinking about the last couple of months and the strides that we have taken to today, we have felt anger, fear, desperation, heartache, coupled with anxiety and every other emotion you can think of.  We know that this will all be repeated after Jody grows his wings.

Also for the last two months, Joe has been the world’s best husband and dad during all of this (he really always is, but lately he has been on a pedestal higher then any other). He has been my rock, tolerated my complaining, and even more important cried with me and shared feelings no matter how bad they are.  He has become the one who kisses boo boos, the fanny wiper, and the man that every time I try to get up and get a glass of water scolds me. On top of every emotion he has taken all of this on his shoulders.

Joe asked me recently if I can promise I will not fall apart if Jody does not make it through labor, if we do not get the window of time with him that I so believe we will have. I had to think about it for a moment, maybe out of utter confusion that he was even asking me to make the promise. So my response was “No, can you?” He looked at me and just started to laugh, we do have good moments! He just figured he would check to see if I could promise the impossible because maybe if I could he could too!

Right now we are walking on a trail that no parents should have to. We have planned for so many things, where Jody will go to be cremated, selected his beautiful urn; have thought about memorial service arrangements, and so much more.  In looking into music for the service I came across this song, now I have not listened to it but it rang a bell. In my weeks home on bed rest I read a woman named Angie’s blog about her daughter and the loss that they experienced. These lyrics were written by Angie Smith in collaboration with her husband Todd to their daughter Audrey Caroline. They just walked through a situation very similar to ours. In looking at the blog today April 7th is the one-year mark that her daughter lived for 2.5 hours.

Something about the lyrics spoke to my heart and I just wanted to share them with all of you. The words really do describe my feelings, we were chosen as parents to the angel that I carry, why we must endure the pain is a question I have asked so many times myself. We know that there will be a reason, we will be blessed and stand taller because Jody was here. He will show us a pure meaning of love and even more then we can imagine.

I Will Carry You
There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says…

I’ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen Me
To carry you

If you goggle the title of the lyrics you can find a YouTube of the family with the song playing. It is beautiful.

Time is short…. ~~Apr 9, 2009

On Thursday April 2nd we had our most recent, and probably last appointment with our specialist, to perform Jody’s last scan. We realize our time with Jody is growing oh so short. We had requested the same scanner, Teresa, who has traveled this journey with us of late. As of last Thursday we were at 35 weeks and 3 days.

During the scan we learn that our little angel was already 7lbs 7 oz. When little kidneys don’t function one of the possible side effects is that they become enlarged. On that day we learned that Jody’s little kidneys aren’t so little. His kidneys have enlarged, enlarged so much that his abdomen was measuring at 40 weeks and 5 days. During the scan Teresa’s words let us know that Jody is going to be remembered even by her as she states, “I’ve never seen kidneys that large before”. His little belly is mostly just kidneys. So we have learned that his kidneys have begun to calcify, his lungs haven’t developed and now there is fluid around his heart. Instead of hearing of improvement we only hear that the situation has deteriorated. We left this appointment knowing at the alarming rate Jody’s abdomen is growing. It is only a matter of days until this little boy angel will be in our arms.

Family and friends have been wonderful and supportive though out the last couple of months since we first learned of his condition. I was actually on the phone with my close friend Trevor, who had called to see if they could bring us some meals. A call like so many we have received of late from family and friends. During the call we actually received another call from our OB, Dr. Adam’s. She had spoken with the specialist and called to discuss options. Carla and I agreed with the doctor that the week of April 6th would be the week that Jody joins us.

We end the call, and we both begin to weep. Our precious window with Jody is beginning to close and with both realize it. It scares the shit out of us. There is nothing we can do to change the outcome. We have been riding a roller coaster for two months, the crazy twists and turns, climbing high only to drop so low. Nothing we do can really prepare us for what lies ahead.

As I type this Carla says to me, “Are you OK, you seem mad”. I tell her “I am mad”. I am mad that Jody will not come home with us. In my mind I can see both Joey and Jody running around at the park. Joey being oh so protective of his little brother. I can see Jennifer being the big sister shepherding her little brothers. I can see all three of my children loving life. The vision I have is very soothing. I see Jennifer and Joey teaching Jody the little things in life that older, much wiser sibling teach the littler ones. This is something that I hold onto, sadly only in my mind.

We have purchased hand molds, foot molds and we have Angelina, our photographer from Now I lay me down to sleep, in the ready. We have been given Jody’s wardrobe for his entire life, one outfit. We have packed bags for Jennifer, Joey and ourselves, the stuff you would normally do when you are expecting a new arrival. Plans have been made for where Jennifer and Joey will stay during our time in the hospital. As far as the day of delivery we have decided that both kids will be present outside the birthing room so once Jody has arrived they will share in him. For Joey, who is only 3 years old we feel it is important to validate that his “baby boy” was here. Instead of one day Jody is in mommy’s belly and then the next day he is not. We know this is a difficult decision, one that some may not agree with. However we are trying to do what we believe is right for our children, sharing in their brother‘s time.

So as we draw closer to “That day” every day has become even more emotional, if that’s possible. I have found myself trying not to think about it because what it does to me. Then I get mad at myself because I don’t want to put thoughts of Jody out of my mind. What kind of father would do that? So, I guess that our ride on that roller will continue, for just a little while longer….

T minus…. ~~Apr 9, 2009

Well, we are nearing the final count down…

We are being admitted into the hospital tonight at 10:00 p.m. and Carla will be given some medicine to begin preparation to be induced tomorrow, Friday April 10th. The last few nights have been very beautiful for me personally. In the past when he was moving around in Carla’s belly I would put my hand on him and he would STOP. The last few nights I have enjoyed the most movement from my little boy angel. I was able to cup his little fanny in my left hand and I’ve been playing with his knee and leg with my right hand. Without any amniotic fluid present one would be surprise at the incredible detail that you can see of an unborn child. Playing with him has brought many tears. Tear of joy and tears of pain and loss.

I can tell you now as I shared with you before, we are not ready, but, there is no time table that could ever prepare us for what is to come. We know that Jody sprouts his wings tomorrow, with that we take as much peace as we can knowing he will be our little angle.

We will be having one of our dear friends update the blog tomorrow with the information about Jody. His size, his weight, if he survived delivery, how long he was with us. Again, we would like to thank everyone for all of your wonderful thoughts, prayers and comments. Knowing that everyone has been praying for us and Jody has given us much comfort in this very difficult time.

Good morning to all of our friends and family..

Our beautiful boy Jody joined us on Friday April 10th 2009 at 8:57 pm.  His weight was 7lbs 1 oz and he was a beautiful 18 inches long.  Our little boy lived a life time before he went to heaven at 9:57 pm.  From every appointment and every doctor we were told to prepare ourselves for the fact that Jody would most likely not survive delivery.  Carla has told me all along he would make it past delivery. When he came into our world, he was moving and trying to breath on his own.  We did not cut his cord right away in an attempt to prolong his little life.  He cried for us…  He opened his eyes for us…  We cleaned him up and introduced him to his sister.  After that introduction we cut the cord and invited his brother, God parents, Grand parents, Aunts, Uncles and cousins in to meet him.  Everyone was able to hold him and we got so many beautiful pictures.

One thing Carla and I can tell you about this little boy is that he was a fighter.  No one gave him a chance.  But this little boy fought to be met by Carla and I.  He was beautiful!  We now have our little boy angel….

Through my eyes… ~~Apr 11, 2009

My name is Angelina.  Joe and Carla asked for me to write about what it was that I saw and experienced before, during and after the moments of Jody’s birth…  I’m humbled.

My parents always taught me that people come and go in our lives.  Some a little quicker than others.  Joe and Carla came to me through Joe’s mother Kathy, and from that moment on, I knew that this family… the Terians, were to become a part of my family as well.

I walked into Carla’s crowded hospital room yesterday around 5:00pm.  So many faces.  The room was bursting at the seams with love, sadness, happiness, fear…  every emotion you could think of… it was all there. In the midst of all of those emotions, there was also an overwhelming sense of peace.

Even though I’ve never met most of the people there personally, Joe and Carla have mentioned the names of everyone in that room more than a few times before, so I felt as though I’d already known who they were, and that was comforting.

Carla was sitting up as Joe stood by her side with one hand on her belly and his face towards a machine that was monitoring her contractions.  They had smiles on their faces, and Joe (being Joe) never missed an opportunity to make us all laugh.  They knew that it would only be moments before they were finally able to hold sweet Jody and then say goodbye.

It’s Time…

It must have been around 6pm when Carla whispered those words to Joe.  The room slowly began to empty as best friends and family members said their goodbyes.  Joe wept as he hugged Janice.  He wept even harder when he and Brian embraced.  Although they’ve all been preparing for this, I know it was so difficult to watch all of them walk out of that room one last time before Carla was to give birth.

Carla looked so exhausted and uncomfortable.  She was also running a fever and getting the chills yet she was more concerned about what the fever would do to Jody.  She finally fell asleep for a moment while Joe and I kind of pigged out on nothing but health food.  I’m telling you, there’s nothing like candy bars, Doritos and Tiki Room music (played backwards) to help pass the time.

The nurses were SO amazing.  Pam was already off of her shift, yet she insisted on staying for Carla and Joe.  Jen was like an angel who whisked in and out of the room making sure Carla and Joe had everything they needed.  The doctor was kind, understanding and patient.

Joe wanted his mom to come back into the room for just a few more minutes, and it was just so precious to watch her as she lovingly comforted and nurtured both her son and daughter-in-law.  There’s so much wisdom to the words: “A mother’s job is never done.”

Carla’s fever spiked, and after one more examination, the decision was made to go ahead and let Carla start pushing.

I grabbed my camera, held my breath, and began shooting.

Twinkle Little Star

Carla did so well.  Oh my goodness, she was so strong.  She pushed a few times before Jody’s head appeared.  He had so much hair!  A few more pushes, and sweet Jody’s head was all the way out. He wasn’t happy about that.  I have the pictures to prove it.  He made such a little face that pretty much told everyone “Seriously!”

As I focused on his little face through my lens, all I could think of was “Oh my goodness… oh my goodness.  He’s so BEAUTIFUL.”

One more big push from Carla, and Jody was born.  They placed him on her belly, and Jody did something that NONE of us were prepared for.

He cried.

Baby Jody cried.  Not the long, loud cries you’re used to hearing… but a soft little cry just loud enough for us to hear.  He also did something that none of us expected for him to do.  He opened his eyes.  In all of his sweet perfection, he opened his eyes and saw the only world he’s ever known.  He saw his mommy.

“He did it.  He made it.  You said he would, Carla.  You knew he would.”  – Joe

Just like his Mommy

Another thing I noticed… although Jody resembled Joe in many ways, Jody looked EXACTLY like his Mommy.  He had her face… her nose.  And his little ears!!  They were just perfect.  Everything about him… was just … so … breathtaking.

Joe baptized his son with holy water after a blessing was said.  The cord was cut, and the family was called back into the room to welcome their precious Jody, and to say goodbye.

Jody lived for an incredible hour.   Just as sweetly as when he entered into this world… he quietly passed to become a “twinkle in the stars.”

I truly believe with all of my heart that Jody fought with everything in him to stay just long enough for everyone around him to hold, love, cradle, kiss and cherish.

What sound does the sun make when it hits the ocean?  The same sound Jody’s spirit made when he joined his heavenly father up in heaven.

I’ve been so blessed… so incredibly undeserving to have been able to capture every minute Jody spent with us here on earth.. from the moment he arrived, to the moment he became and angel.  Through my lens.  Through my eyes…  through my soul…  I will never forget.

From the heart of Jody’s Grampa…. ~~Apr 13, 2009

It is Monday morning.  I lean back in my recliner with the windows and doors open, feeling the cool breeze and listening to the assorted birds sing their beautiful songs.

I close my eyes and reflect back to Good Friday evening standing in the hospital room cradling the flesh of my grandson and weeping.  Then I see the angels singing as God cradles his soul.

In sixty minutes, baby Jody accomplished his goal in life – what power.

I have been on earth sixty-eight years and I’m still not through accomplishing mine.  Love from Dad / Grampa Terian

Jody’s Memorial service…. ~~Apr 14, 2009

We have so much to share with everyone in time. We want to celebrate our son and share one of the saddest and the happiest hours of our lives. Angelina was so wonderful in her posting, she was in the delivery room with us from beginning to end and was one of many that got to share a few precious moments with our sweet Jody.

April 10th will be a day we always remember with sadness and with joy. We received an Angel that day, held him, kissed him, and cried over him.

However, we are announcing a celebration in this posting. A celebration of our little boy, who as his ,Grandma, describes was just perfectly formed with beautiful skin, dark hair and blue eyes.

Memorial Services for Jody will be this Saturday, April 18, 2008 at 12:00 noon

St Anne’s Catholic Church

440 E Elliot Road

Gilbert, AZ 85234

Phone: (480) 892-0905

Please join us in celebrating our son this Saturday.

One small tidbit about our time with Jody:

When he arrived we heard rain falling, it stopped shortly after he passed. Our Dr. whispered in my ear that Heaven was crying. One hour is so much more then we ever asked for. We have yet to be upset about that. Saturday leaving the hospital it was clear all day, Joe wheeled me out to the car and the rain started. We looked out to the east and there was the most beautiful rainbow. We took that as our sign he was there. I can not explain the peace that we felt after he passed. He was here, he touched us as long as he could. And he was BEAUTIFUL!!! Please join us in celebrating him….

On Saturday as many of you know we celebrated one of the most significant hours of our lives. The hour that Jody was with us will forever be ingrained in our hearts and minds, and though his services can be considered closure to some. The healing process will go on for so many, including ourselves.  We could not have asked for a more beautiful service and a church filled with wonderful people that have touched our lives through all of this. We are so blessed to have supportive family and friends. There were many people that did not make it to the services, but were with us in spirit. So we wanted to post the letters written from our hearts to our beautiful Angel Jody.

Letter from Daddy:

My Dearest Jody,

I can’t begin to tell you how much your mother and I love you.  I can honestly tell you, you can fall in love in an instant.  There are so many things that I planned to share with you.  So many stories about your beautiful Mommy, your strong sister and your loving brother.  We were blessed to have you in our lives for that beautiful hour.  But as your Daddy, I can tell you I am very selfish.  I wanted more!  I wanted much more.  How do I compress everything in life into an hour?

How can I show you all the wonders of this great world with such a small window of time?  When can I teach you about football, baseball and all the fun things in life. I will miss teaching you to ride a bike, playing tag, tucking you in at night, watching you sleep, holding your hand, looking into your beautiful eyes, seeing your smile, you sitting on my lap, sleeping on my chest, this list could cover  hundreds pages.  Many people have told Mommy and I that this is not fair.  It is not fair, you should be sleeping in your crib at home as I write this, you should grow in to a young man with the love of your family.  It is not fair, for you will never have your bride and a family of your own.  But one thing we understand is that your are our angel, and god only gives a few people one.

As mad and sad as I have found myself, I want to thank you Jody.  I want to thank you from the bottom of my heart.  In spite of the fact that every doctor we saw told us you would most likely not survive delivery, you fought.  You fought to make it into our arms on that rainy night. With each passing minute you fought to stay with us.  As the time moved along, you fought like I have never seen before.  You put everything and I mean everything into that fight, until you had exhausted the last ounce of fight you had within, and then you sprouted your wings.

Mommy and I have learned so much from you my son…  We have learned to be a stronger couple, even better parents, more caring friends.  We have learned to put things into perspective.  We have learned that things that we thought were so important to us, really are not that important after all.  We have learned that family is more than just a word.  Time is not infinite, and it must be treasured.  We are given gifts, gifts that must be cherished, because as quickly as we are given those gifts, they can be taken away.  To live for today because tomorrow is not guaranteed.  Not to dwell on what you don’t have, but to cherish what you do.  Never to part without telling the ones you love what they mean to you.

Jody, you have taught me to be a better person.  You, an infant have become the teacher and your students are all of those who’s life you have touched.

Thank you for being our little boy angel.

I love you

Daddy

Letter from Mommy:

Dearest Jody,

What a blessing you have been. All of us have anxiously awaited your arrival since the day we found out we were expecting another precious child. Though our plans have changed, our hearts have not. Know that Daddy and I are so proud to have another little boy. We name you Jody, which means praised, because it is a name I have always love, and Michael, which means who is like God, after Daddy.

I keep trying to wrap my head around what has happened and am trying to accept the fact that you have a greater purpose somewhere other than here. I have been told that the Heavenly Father sends each being for a certain amount of time and that only special parents are chosen to love a child for only brief moments after birth. Just so you know, as much pain and loss as we feel now, our hearts will heal.

I believe that you were sent here to be our teacher. You have showed us the undying love that parents have for their children, and you are no different than any other child. You, son, are an angel and one of our greatest blessings. You will be part of our present, our past and our future, and your short presence on earth will never be forgotten. We know that your sprit will live on and that you will be in a safe place without pain watching over all of us. The list of what you accomplished and what you have taught is so long. Your existence has strengthened bonds between husband and wife, sisters and brothers, mothers and daughters, fathers and daughters, and bound friendships. You have showed us new meanings of hope, faith, forgiveness, love and so many others, and you have blessed us with a stronger family tie and unconditional love that will stand the test time.

In our minds you will always have the face of a baby. Each of us will picture your mature face differently, but we know that you will be as beautiful as your sister and brother.

I will always long for your baby-belly-laugh, to see you crawl and walk for the first time, to feel your soft new skin pressed against mine, and to be memorized by the rhythm of your small sleeping body on my chest. Though my arms will always ache to hold you and my lips to kiss you, we will have peace knowing that you have been spared from all pain.

I can only imagine if you would share your dad and brother’s love for planes, trains and anything that moves, or if you would have the same funny personality as your sister and your brother. I can only wonder if you would have been soft spoken like Jennifer and Dad or thunderous like Joey and myself. Would you share the same sensitive heart that your sister has and that we love so much?

From this point forward when a breeze brushes our cheek, we will know that it is a sweet kiss sent from you. You will be our twinkle in the stars when we look up at the night sky.

Once in awhile you might hold Daddy’s hand; he will not know, but offer him peace and serenity. He has been so strong for us, especially me. Watch over your brother and sister because they need to know that you are there. When the time comes, will you please meet us at the gates of Heaven so that we can have a chance to hold you?

In my mind you will always walk beside me.  You have filled my heart with joy and love in a way that I never imagined.  Please tell God that we will follow you, it may not be soon, but we will join you some day.

I will forever be a Mommy of Three, two of my babies walk and one that is meant to soar in the heavens above.

Thank you, Jody.  I love you.

6 thoughts on “From the beginning…”

  1. I just recently found your blog and I am so touched by your story. I am sitting here in tears and in awe of your experience and your strength. I was a mom with NICU babies and I feel bad for even feeling bad about having them there. It was difficult for me but my babies were able to come home. What an inspiration you and your family are. I believe that babies that pass on early like that are so special that they are too perfect for this life. I know you will see this precious baby again. Thank you for sharing your story.

  2. I have been reading all about your story and I have just recently on the 20th May 2011 lost my son to ARPKD. He was fortunate to have 14 months with us but was given the same outlook that he would die when born. My son was the happiest little boy ever, always smiling even through some very difficult times that he endured. Arran was 5lb when he was born with kidneys weighing roughly just over 2 and half pounds and measuring a length of 9cm each. But as each month past they grew bigger and bigger having a tremendous impact on his small and under developed lungs. From January of this year we spent 5 months in intensive care with Arran not coping and on May 19th we were told that he had no lung capacity left and it would better that we let him go to heaven. that night was the most treasured night but saddest night I have ever experienced to know that you have matter of hours to spend with your son. Arran past away on the 20 May this year having been slightly smaller and lighter than the average one year old with kidneys much larger than adults, measuring in length 20 cm. But my memories are of his smile, his waves and his love for cuddles.

    As I read your story and some blog you are an inspiration to me at times when I struggle, times when grief overwhelms me and I feel suffocated in it. At times I find it hard to praise God when I am consumed with grief for my selfish reasons of missing Arran and wanting Arran with me, yet other times I praise God that Arran is now free of struggle, his 40 medicines a day, feeding tubes, oxygen cannulars, kidneys that so enlarge that he cant walk or sit up. You all have found amazing strength and have brought comfort and hope to people like myself and I thank you…

    • Laura, I am so sorry for the loss of Arran. In 14 month he must have brought you such joy. I have a deep understanding of your struggles with God, I have yet to get the answer to my prayers when it comes to Jody. But honestly, I have to believe that I have not opened my heart to Him and asked for forgiveness in regards to my anger. I think that once we get past the stage of anger, we can move forward with a deeper understanding of the true gift our children are.

      I would like to encourage you to visit the ARPKD Angels group on Facebook. Sadly we have 118 members that have been affected by the loss of a child or loved one due to ARPKD, but it a wonderful forum of support for recent losses. The link is http://www.facebook.com/groups/148192719137?ap=1.

      Thank you for your kind words… The blog was a place of healing for me, a spot where I could share my most difficult feelings of grief. Right after losing Jody grief encompassed every aspect of our lives. Often times I would want to sit in my room and shut out the world. Grief has subsided, but it does come in waves when you least expect it. Arran will always be with you. He will be your guide through life and will give you support through the hardest time. Make time to feel close to him and it will help you through healing.

  3. Your life experience has impressed on me to share this real afterlife experience with you both. There is a Christian lady who died for a day and came back to life. While she was in Heaven, Jesus came and showed her the many wonders there. Amongst those, were small babies who had been aborted, died before birth, died while being born, died very young and those like Jody who died after being born. Jesus directed her attention to them stating that these babies were waiting for their parents to arrive in Heaven to be reunited with them. Even those babies who were aborted had no grudge against their parents, so if the parents repented, accepted Jesus as their Personal Saviour, they would be saved and make it to Heaven, they would be together. All of the babies were still infants. Jesus said they would remain infants so their mom and dad when they arrived in Heaven, could raise them as the same age as when they died (the lady that died and lived again said that in Heaven, everyone is no more than 30 years old). Jesus showed her a playground where older children were enjoying themselves. He also took her to a wall that was full of small babies in shell-like cradles. Some babies were sleeping peacefully, while others were being entertained by small singing, colorful birds. These birds stood on small branches right above the babies’s cradles singing and moving about the branch while the baby gurgled and giggled. Other babies were taken in the arms of beautiful angels and thrown up a little and caught again, this made them laugh loudly with resounding delight. I believe this was a true experience because my mother died and came back to life and told us about her time in Heaven, and, she said she had been in hell also. She saw the hands of many nationalities in a dark pit, trying to uselessly climb out, screaming obscenities at God. she saw satan himself and he tried to grab her, Jesus’s angles pulled my mom out from hel and she ascended into Heaven. You see, my mom never wanted to go with my dad to Mexico and preach God’s Word to the lost souls there. But after her experience, she changed her mind. My dad, her and us went to Mexico as missionaries. Thankfully we were able to reach many souls for Jesus. My dad passed away 3 years ago. I lost my 5 1/2 month pregnancy ( a little boy) while there. I truly believe my dad, my brother who died 6 years ago and my baby are waiting for me there. I will see them again. You can be reunited with your son also if you ask Jesus to come into your heart and be your Lord and Saviour. Repent and confess your sins directly to Him ask Jesus to wash you with His precious blood. Live for Him and read His Word and you will be reunited with Jody. I will pray for you to make the right choice, please don’t reject Jesus, He loves you and wants you to serve Him here on earth and spend an eternity with Him. He wants you to see your baby again…God Bless You both!!

  4. Like most of the comments here, I am sitting at my computer with tears streaming down my face. And I am also thinking of how beautiful your little Jody is. So stunningly beautiful. And your souls are beautiful too–I have been so very completely moved by your blog. I am amazed that you had the strength to write it and relive it. In my head I keep asking “why?” but only God knows. While it is unfair it is still His plan. You have the most lovely angel watching over you. Let us hope that the speculation is true: it is a lifetime for us of anxioulsy waiting to be reunited with our loved ones in heaven, but for them it is just a moment. Hugs, LOVE, and prayers to you and your family. ~Holly

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