3 Years Old

Saturday, August 13, 2011

Dearest Kennedy,

I can not believe that you would have been 3 years old today. I often times think to myself what you would be like if you were here.....What would be your favorite food? Would you be a tom boy or a little princess? What you would look like? Sadly, I will never know the answers to my questions, but that doesn't stop me from continuing to think about you. We put together a BBQ @ Grammy and Grandpas and invited everyone over. Your Daddy and I wanted to make sure we honored your birthday and have a celebration in your memory.

It wasn't the same without you there. This is the first and not the last birthday we have to celebrate in your absence. We miss you more and more everyday. Your baby brother Collin looks so much like you. He has your attitude and spunk. When he is happy, his face lights up and you can see it in his eyes - it is as if he smiles with his eyes, just as you used to do. We talk to Collin all the time about you. We tell him stories and show him pictures of you often. It is my goal to ensure your memory lives on as long as I do.

Well, I love you and miss you!!!

Happy Birthday Peanut!!!!

Love,

Mommy, Daddy and Collin too!!!

Mirror Image

Wednesday, June 29, 2011

Sorry it has been so long since my last entry. I have been a little preoccupied the last couple months. As you know, we welcomed Kennedy's baby brother into the world on Monday, May 2, 2011. He has been such a blessing. I just know that Kennedy is beaming down from above with such joy and pride. So far all has been well with Collin - with the exception of a minor surgery he had on Sunday, June 5, 2011 at just 4 weeks of age.

We took Collin into to our amazing pediatrician earlier that week because of some vomiting and overall irritability. He advised that it could be a couple things. He said there were two strains of the stomach virus going around, it could be reflux, or possibly pyloric stenosis. Everything I was describing to our Ped sounded like classical reflux symptoms. He prescribed us an antacid and sent us on our way. By Friday things were only getting worse. I called our Ped friday night explained the situation. He said he would be in clinic on Sunday and to bring him in if things progressed. Of course I was overly anxious. I went on with my laundry list of questions regarding dehydration. He gave me five key pre-cursors to look for. He proceeded to tell us if any of these occurred over the weekend to just take him into the ER. Well Friday night was horrible. Collin projectile vomited all evening, screamed bloody murder, and decided that it was unnecessary to produce urine any longer. Once we went about 24 hours with only two small wet diapers we decided to take him in.

After lots of waiting we received an ultrasound and were given the diagnosis of pyloric stenosis - which is a narrowing of the pyloric muscle (a muscle connecting the stomach to the small intestine). This muscle becomes extremely large and does not allow food to pass from the stomach to the small intestine. We were told that he would need a pyloromyotamy to allveiate the problem. I remember when I first heard that Collin could potentially need surgery, my mom and I just looked up and said to each other, "Kennedy, don't worry we haven't forgotten about you". Walking through the doors of that hospital, seeing some of Kennedys nurses and being in those very rooms Kennedy occupied a couple years ago as she fought for her life was a little overwhelming.

But this time unlike any other time with Kennedy, there was a cure for this particular issue. Collin would be cured. Something we prayed and prayed about for our Kennedy, but unfortunately it was not gods will. Collins surgery was a success and he has been a new baby ever since. No more vomiting and no more irritability. I must say that I feel so fortunate to have Kennedy up above looking over us. Collin is one lucky little brother to have such an amazing big sister - his very own personal guardian angel!

I would be lying if I didn't say that having a new baby in our lives hasn't been hard. I remember the very first night we brought Collin home and laid him in our bed for the evening, I was overcome with extreme guilt. I could not help but feel as if I was replacing our baby girl with this new baby. Deep down I know that Collin is not a replacement for Kennedy, but at that moment I could not help but feel utter weakness and sorrow for myself. I wanted to look down in that bed and see our Kennedy laying there, instead that spot was occupied by her baby brother.

Well, I started off this post wanting to go in a totally different direction, but apparently I went off on some wild tangent. What I originally wanted to talk about was something that took my breath away a couple weeks ago. The three of us went to our local italian deli to pick up some items for a BBQ we were hosting. As we were waiting in line, I glanced over at Brian who was holding Collin and what I saw just about brought me to my knees....

What I saw in front of me brought tears to my eyes. What was my husband holding my son, appeared to be a mirror image of my Kennedy. I made Brian stand still so I could snap this photo. That one moment made my day!

Mommy misses you Kennedy! Our life just isn't the same without you in it!!

Introducing Kennedy's Baby Brother....

Sunday, May 22, 2011

The Bonomo Family is proud to introduce the newest member to our family.....

(Newborn Photo Shoot - Collin Rocco Bonomo 5 days old)

Collin Rocco Bonomo

Born: Monday, May 2, 2011

Time: 8:03 AM

Weight: 8lbs 3oz

Length: 19inches

Mommy Daddy and Baby are doing great. Collin was born at Loma Linda University Medical Center (a place that has become like a second home to this family). Even though Kennedy is not here in a physical sense, I know that she is beaming down from heaven upon her baby brother. Collin has many distinct characteristics that emulate features possessed by his big sister. The first 24 hours I literally sat in awe looking upon the miracle that I was given. It was very bitter sweet to be holding Collin, because such a big part of me yearned to have Kennedy in my arms. Will update more sometime this week!!!!

(The most amazing photo....Jen our photographer left me speechless with this picture. The meaning behind the sign could not be more true)

Increasing by 1

Sunday, May 1, 2011

(The very first time Mommy laid her eyes on you Aug. 13, 2008 - I had no idea what the future held for us but I loved you without limitations. You were the single greatest thing to have ever happened to me)

Dearest Kennedy,

Tomorrow we meet your baby brother for the very first time. Mommy is very anxious for the big day, however, I am also very saddened at the fact that you will not be around to celebrate in this joyous occasion. For over five months I remember conjuring up all sorts of ideas about the day you and Collin would meet for the very first time. Oh we knew how much you loved babies around you. You always became so engaged at the sights and sounds of one near by you. You had this intuitive sense for small babies and they seemed to bring you such peace. You were the first one to feel Collin kick inside Mommy's tummy. You spent hours and hours in close contact with him as Mommy held you.

But sadly instead of a day full of pure joy and excitement....tomorrow will be a day full of mixed emotions. Of course we are elated to welcome your baby brother, but we are also greatly saddened in your absence. I know as your daddy and I are in the operating room waiting for Collin's grand entrance, you will be watching over us all. Collin is the luckiest little boy to have such an amazing big sister. So tomorrow our family grows by one more member - we move from being a family of three to becoming a family of four. Even though you are not physically present anymore your memory is and never will be forgotten. Because of you Daddy and I have grown so much as individuals and you have made us even better parents.

I love you and miss you more and more everyday. I wish things were different and that you were back home with us, but for now I have accepted that our separation is only temporary. I look forward to the day that we are reunited.

Love you forever and ever,

Mommy and Daddy too!

Proud

Thursday, March 24, 2011

Dearest Kennedy,

As I reflect upon your life today I am overcome with emotions. The logic of medicine said you should have never lived as long as you did, but you had plans of your own. You were such a fighter. We were told over-and-over that it would take a miracle for you to leave the NICU alive. Your Daddy and I were so very proud to carry you through those hospital doors on Thursday, October 16, 2008. We were then told that it would take a miracle for you to live to celebrate your first birthday and when you accomplished that feat let me tell you something, we celebrated and danced like we had won the lottery. Day in and day out we were overjoyed and in awe in your presence. You were so head strong and determined (I wonder where you got that from?) Doctors didn't give us much hope. According to them, it was only a matter of time before your journey here on this earth would draw to an end. You fought on.....

You lived:

• 2.41 Years
• 28.89 Months
• 125.41 Weeks
• 878 Days
• 21,068.85 Hours
• 1,264,131 Minutes
• 75,847,860 Second

You were such a fighter. You made it quite evident that this was your journey and you were going to be responsible for writing the ending to your story. No one was going to dictate to you how your life would turn out. I must tell you Kennedy I am so very proud of you. I was given the most amazing gift of life on Wednesday, August 13, 2008. The way I feel about you can only be described as the way a parent must feel when their child becomes president or finds a cure for cancer. You spoke few words and were here on this earth for such a short time, but the impact that you have had on myself and others is unbelievable.

You continue to live on inside of me! I celebrate your life daily. This world will never forget you!

I love you,

Mommy and Daddy too

We are the Lucky Ones

Tuesday, March 8, 2011

(Christmas 2009 - Kennedy was always so mesmerized when she was in her Daddy's arms)

My Dearest Kennedy,

Today marked another month since you left us here on earth to go walk hand-and-hand with our lord. I must admit I miss you more and more as time goes on. The idea of permanence has become an incredibly hard concept for me to grasp. It is very heartbreaking to know that I will never see your face, hear your voice, or touch your skin here on this earth. I have been struggling knowing that I have to wait an entire lifetime before I am able to be by your side again.

Your brother is doing amazing. The doctors say that mommy has a big boy growing inside of her belly. I am anxiously anticipating his grand arrival. I can not wait to see what traits or characteristics that he possess of yours - will it be his hands, hair color, eye shape, nose, mouth....It does not have to be something big, I just want him to carry something of you on him forever.

I know you already know this, but you have the most amazing daddy in the whole world! He has been taking extra good care of mommy in your absence. Kennedy, you have really helped to shape your daddy into one of the most selfless, thoughtful, caring individuals. He is still very quiet but when he talks the words that come from his lips are profound. We went out to dinner yesterday and I was telling him about another little baby that was born very sick. This baby's mommy and daddy were about to be faced with the toughest decision of their life. He was only 14 days old and because of his diagnosis his prognosis was very poor/terminal. They were going to remove him from life support. They were praying and praying to god for a miracle, unfortuanelty he had other plans for this very special little boy (just like he had for you).

As I conveyed this story to your daddy he looks back at me and says, "we are so lucky". I knew exactly what he was talking about, but asked for clarification to ensure we were on the same page. He proceeded to tell me how sorry he feels for families put in this position and feels incredible gratitude that we were able to take you home and get to know our first born baby. He continues on by saying, that we unlike many families were able to enjoy 29 long months with you in our lives. We exposed you to all the world had to offer - we took you any where and everywhere sharing with you life's experiences. He proceeded to say that so many other families are not as lucky as we are and for that he is eternally thankful. We got to know you Kennedy on such a deeper level. We were able to share you with the world and become enamored in your presence.

I must say Kennedy - your daddy is one smart cookie. We are lucky and blessed! Even though your time here on this earth was short we live with no regrets. We do not second guess any of our decisions in your care and we know that we gave you the best life any two people could possibly offer. We are the lucky ones.....god decided to bless us with you as our daughter. To have had you in our lives even for such a short time is a gift that none will ever surpass. So many other families are not as lucky as we are.

I love you more than anything in this world Kennedy. I continue to share your story with everyone. You will forever be a presence in this family. One thing I can ensure you is that me, your daddy, grammy, grandpa, auntie and uncle will never ever forget you. We talk of you often and reminisce about your life. I have said it once but I will say it a million times over. I would endure this most horrific heartache over-and-over agin because knowing you and loving you was SO worth it.

Mommy loves you....

Love,

Mommy and Daddy too

One Month....

Tuesday, February 8, 2011

(1 month old - 9/16/08: Our first picture of you after your successful extubation. Doctors from all over the unit stopped by to see the baby that no one thought would make through the first night)

Dearest Kennedy,

I can't believe I have had to endure one month on this earth without you! I knew that this day was inevitable, however, knowing that you were never going to live a full long life still hasn't made loosing you any easier. My arms long for your warm body, my ears search for the sound of your voice, my nose yearns for the smell of your breath, my eyes continuously scan for the sight of your beautiful blue eyes, perfect button nose, long curly shiney red locks, and rose red lips and my heart aches. I miss you more than most will ever understand.

The thought that your absence on this earth is permanent is a hard concept to wrap my mind around. However, I am very comforted in the simple fact that I was able to immerse myself in your presence for almost two and a half years. I was given the best gift when god blessed me with the most perfect baby girl.

We all miss you so much. There is not a day that passes that your name is not spoken or a one of your pictures doesn't catch my eye. Daddy has been keeping busy getting your brothers room all ready for his grand entrance on May 2, 2011. I know you will be there front and center with the best seat in the house.

I got Grammy a gift from you. It is a hand painted personalized wood plaque which reads, "I wouldn't be so spoiled if someone would just spank Grammy". She loves it! As you know better then anyone - I hate change. But as with anything, I am learning to adapt. I yearn for the day when we reunite, but until then I will continue to remember you by sharing your story - to anyone and everyone that will listen (and even to the ones that won't LOL). I am the women I am today because of you Kennedy and for that I am eternally grateful.

I love you and miss you everyday!

Love,

Mommy and Daddy too

Kennedy Talking

Sunday, February 6, 2011
It is often thought by many that Kennedy's life was full of sadness and pain. That she was this empty lost soul with no brain that was unable to experience the simple pleasures of life. However, the presumptions of others couldn't be farther from the truth. Her family and our closest friends knew different. One of the worst statements I would hear from random individuals was how sorry they felt for Kennedy. My immediate response was and continues to be WHY? Don't feel sorry for her. She had one of the most amazing life's - she was showered with love, she was comfortable and without pain a vast majority of her life, and she was blessed with family and friends that would do anything for her. I tended to use my blog as an escape. It provided me with a therapeutic outlet where I could write out my emotions, struggles, and battles that were faced by my family.

Anyways, to the point of this post. Around 10-12 months of age Kennedy finally began babbling. She would coo and ahhh all the time. It was so unexpected because we were never given any hope that we would ever be able to experience this with our daughter. In addition, it became such an invaluable tool which allowed us to gage her moods by. Around 15-16 months she began having conversations with us, putting together two syllable sounds - in those times it was so easy to forget Kennedy wasn't a "typical" child. Hearing her voice could turn even the worst of days around. She was communicating to us in her own unique way.

I have tens of thousands of pictures of Kennedy. I never really video taped her (not really sure why) but around October once I got my new iphone (aren't grown-up toys so fun) I began recording Kennedy. October 14, 2010 I recorded one of the best 2 mins and 41 secs. Kennedy and I were at home sitting in our rocking chair having a long ole conversation back and forth which we did all the time, but this time I began to record her. She was saying, what to me sounds like mama and dada. So I thought I would share it with all of you.

A Mothers Words

Monday, January 31, 2011

On Saturday, January 8, 2011 at 5:30 pm I lost one of the most important things in my life - my two and a half year old daughter Kennedy. Her life and death has forever shaped how I will live this life here on earth. Kennedy is the single greatest thing to ever happen to me. I feel so blessed to have been given the opportunity to have known the most amazing human being to ever set foot on this earth. She was and will continue to be a shining force in my heart and soul. She has touched me deeply and has taught me more about life than any other person or life experience ever has.

Today is a day for us all to mourn through celebration. Kennedy’s life was nothing short of miraculous. How does a mother say goodbye to her little girl? She doesn’t! She will never accept the fact that the precious angel that touched her heart like nothing else is gone. What brings her piece is that she is not gone. She lives. She lives inside of all those whom she’s touched and she lives with god. Someday that mother and little girl will be reunited again – and I can’t wait!

We have heard from so many people who’ve told us about how Kennedy’s story has touched their lives and made them reevaluate their relationships and reprioritize what’s important to them. People started to pray again, some people began praying for the first time and some were spending more quality time with their children and all learned that life was not a guarantee and was not to be taken for granted. All of this happened because of Kennedy! She had the uncanny ability to make you step back and not allow yourself to get caught up in the hustle and bustle, to slow down and smell those flowers,

At just 2 ½ years old - she accomplished more in her short life then I have in mine. I was her Mother. I was supposed to teach her, guide her through life and provide her with the foundation to grow into a strong and beautiful women, but instead she taught me – patience, how to embrace life, to rejoice in even the smallest of achievements, to approach challenges and mere impossibilities with the attitude that nothing is impossible. She had the uncanny ability to make me step back and not allow myself to get caught up in the hustle and bustle, to slow down and smell those flowers, and to truly love without limitations.

We have been dealt a devastating blow to our lives and we may be experiencing the absolute worst that life has to offer, but Brian and I always try to make the best out of any situation. There are really two choices we all have in a situation like this one – we can wallow away in self-pity, doubt, anger and sadness or we can rise above the situation embrace the circumstances that were bestowed upon us and accept the things that we cannot change – we choose to live and live like we had never lived before We celebrated and rejoiced in Kennedy’s life. We turned even the most negative of circumstances into a positive and we smiled, laughed and really just embraced our life together as a family!

If I was asked this question once, I was asked it a million times over, “knowing what you know now would you do it all over again” The answer is unequivocally without hesitation – yes! I would re-live the pain and heartache just to have known, loved, and cared for Kennedy. Very early on we decided to live life according to the way Kennedy wanted to live. We relinquished control and handed the reins over to Kennedy very early on. This was her journey and we were there by her side every second of everyday to support her, comfort her, care for her, and love her in every way possible.

I would have to say that the outpouring of love and support that our family has received in the last two and a half years really leaves me speechless. Kennedy has forever changed my life. Moreover, the impact she had set upon others is profound and nothing short of amazing. Even though she was unable to talk, her presence and innocent soul has forever left an impression on our lives that will last a lifetime!

To my husband Brian – what can I really say to you besides thank you for being there. You played such an instrumental role in allowing Kennedy to live such a wonderful life. Kennedy has brought so much joy and love to our lives and has brought us so much closer together as a couple. The sacrifices that you made were all done with your family’s best interest at the forefront. She has made you into one of the most selfless persons that I know. Given our state of affairs I do not know many men that would have stuck around and would have done so with such strong convictions for your family’s needs and well being. You allowed me to quit my job, to stay home and care for our daughter, you did side jobs to make extra money, you came home daily after a long days and then cared for Kennedy to give me some time to myself, and I can remember countless evenings where you stayed awake with Kennedy late into the wee hours to allow me to sleep and then woke up the next morning to do it all over again. Kennedy was so blessed to have you as her daddy!

Finally, I prayed hard over these past few months that when it was time for Kennedy to leave us here on earth she would go peacefully in the presence of her family embraced in my arms. God and Kennedy worked together in such harmony and blessed me with an amazing end to an incredible journey. So I am going to ask God for one more thing. When my time comes and I get to see my Kennedy again, I’d like her to be 2 ½ years old and I’d like to be 27 again because I want to be able to pick right back-up where we left off. Sitting in a rocking chair with Kennedy in her favorite position on my chest. That would be a perfect way to begin eternity.

A Celebration Fit For A Princess

Wednesday, January 26, 2011

So Kennedy's Memorial Service was two and a half weeks ago and I can recall the service with such clarity like it was yesterday. The day after Kennedy passed away one of my really good friends Jennifer Bagwell (Kennedy's personal photographer LOL) called me to ask if I would allow her to plan and organize Kennedy's memorial service. For most of you that know me and those that may not, I kind of consider myself a little bit of a control freak and am slightly OCD - I am a take control kind of person. My normal reaction would have been to politely decline and take on the project myself. Partly because of my personality but mostly because I don't like to put others out - I don't want to be a burden. However, the day Jen called me to ask about planning the service I immediately replied with a huge sigh of relief, "yes I would honored and eternally grateful if you would take on this overwhelming task".

Kennedy's service was absolutely perfect! No detail was overlooked. It was bright and cheery. There were hundreds and hundreds of flowers. Jen made an amazing three tiered centerpiece consisting of large cylindrical vases filled with water and orchids. There were also two personalized monogrammed banners which were also very bright and colorful and a wishing tree that allowed people to leave personal messages Kennedy. Furthermore, the tables were covered with bright bubble gum pink tablecloths and adorned with gorgeous flower centerpieces and finished with individually filled mason jars of peanuts (of course my favorite finishing touch). The service was so appropriate and could not have been a more perfect way to honor our little Kennedy. It was definitely a party fit for a princess.

The service started with an amazing 15 minute slideshow that Brian and I put together. It was a very emotional yet fulfilling project for us to do. It was so nice to look back upon our daughters two and a half years and to know that she lived one hell of a life. I am still trying to figure out how to post the slideshow to my blog. It was very important to me to have someone who knows our family and who knows Kennedy and her incredible journey to lead her memorial service. I was honored when our friend Pastor Rod agreed to lead Kennedy's service (he was the person who blessed Kennedy when she was just weeks old in the NICU @ Loma Linda). Rod did an amazing job. He kept the mood up beat and very positive - he led the service the way we chose to live our lives.

After Pastor Rod spoke I got up to say a little bit about Kennedy's impact on myself and the rest of the world (I will post my eulogy another time). I was left speechless when numerous family and friends got up to speak. It was so incredibly touching and truly was an honor. Listening to the words of others really reaffirmed Kennedy's purpose and meaning in this world and illustrated what an impact she has had on so many. It truly was a celebration fit for a princess.

(A memorial table I set up at home with items from Kennedy's service)

Kennedy's Memorial Service Program

Sunday, January 16, 2011

Kennedy's service was absolutely amazing. I will tell you all about it tomorrow. In the meantime attached is a copy of Kennedy's Memorial Service Program.

Kennedy Mae Bonomo's Memorial Serivce

Monday, January 10, 2011

Kennedy Mae Bonomo's Memorial Service

Date: Friday, January 14, 2011

Time: The service will begin at 12:30 pm and the reception will follow immediately after at the same location as the service

Location: Located at Central Park (Lewis Community Center) in the Rancho Cucamonga Hall

11200 Baseline Road, Rancho Cucamonga, CA 91701

909) 477-2782

This service is open to the public and I would like to invite anyone that would like to attend to please be there. Brian and I want this to be a huge celebration of Kennedy's amazing life. She has changed my life in such a profound way and I know that she has touched the lives of many others!

An Angel Earned Her Wings

Monday, January 10, 2011

Heaven has earned the most beautiful, perfect angel on Saturday at 5:30pm. Kennedy is free and watching over us from above. In typical Kennedy fashion - she has her own agenda and was sure she left this world the way she wanted too, in the arms of her momma! Kennedy had been having an amazing week after her Neurologist appointment. The Ativan really seemed to be doing the trick. Kennedy was happy and the most talkative she has ever been. She spent the night at her Grammy's and Grandpa's house on Thursday night because I had an OB appt. first thing Friday morning. My mom said Kennedy was watching bugs bunny with my dad and appeared to be in a great mood. She slept amazing that night and was up and alert Friday.

Brian and I went to pick her up from my parents around 1pm. My mom mentioned Kennedy was kind of quite Friday afternoon but was really content. We loaded her in the car and headed home. Kennedy was talking away in the backseat. We spend the rest of the afternoon cuddling with our baby, as we did each and everyday. Friday evening we laid Kennedy down in bed around 9pm and Brian and I proceeded with our nightly routine and climbed into bed about 9:30pm. Kennedy was sound asleep - which is very unusual. First she never goes to sleep before midnight and secondly she never falls asleep without us in bed. I didn't think anything of it - I climbed into bed grabbed her hand and fell asleep. We woke up around 9 and Kennedy was still asleep. A little peculiar but again I didn't put much thought into it. I just figured she has had a rough couple weeks (excluding Tues. Jan 4 - Thurs. Jan 7) so I assumed she was trying to catch up on some much needed sleep.

My parents came over Saturday around 11:00 to help us start setting up the baby's room. I periodically poked my head into our room to see how she was doing as sometimes she wakes up and just lays around. She was still sleeping so I let her be. She finally woke up around 1pm. My dad held her for about an hour while we finished up the room. Then I gave her a bath and made her all fresh. After her bath her and I sat in our favorite recliner for a couple of hours while she laid quietly on my chest. She became kind of congested so I suctioned her and laid her down figuring I would just change up her positioning.

We were having a BBQ that evening and Kennedy's godparents (Derek and Jen) and our other really close friends Andy and Sarah showed up around 4:30pm. Brian began cooking dinner as i sat next to Kennedy on the couch with my girlfriends talking about Kennedy (as usual - it is one of my favorite things to do). I got up to show Sarah the progress on the baby's room and my dad called me back into the living room because he wanted me to hand him Kennedy. I picked Kennedy up and passed her off to my dad. As soon as my dad got her he made a comment that he didn't think she was breathing. I grabbed her out of his arms and the rest is history....The amazing thing was that she was fine while she was laying on the couch sating in the high 80's. She was waiting to be in our arms where she was most comfortable and at peace. There was no struggle or fight. She was at peace.

Kennedy left this world when she was good and ready. She was tired and put up one hell of a fight. She was sure to leave this world in the presence of the most important people in her life, her Mom, Dad, Grammy, and Grandpa! After her passing I held her on my chest in her favorite position and she looked like the most perfect beautiful angel I had ever seen. She was amazingly beautiful and was at peace.

Fear

Thursday, January 6, 2011

Would it be safe to say that the last several months of my life I have spent crippled in fear? YES! Kennedy's condition is progressively getting worse and thoughts of her eminent death are always in the back of my mind. Yes, I fear my daughter and our families circumstances.......

• I fear the uncertainty of her life
• I fear that while I sleep my baby will leave us for heaven and I will not have been there for her last minutes
• I fear that Kennedy will not be here for the birth of her brother
• I fear that Kennedy's death will forever change who I am - to the point where myself or people around me will no longer recognize who I am anymore
• I fear that I will not know how to function without my daughter
• I fear that Kennedy' death will destroy my husband and my father
• I fear that I have gotten in over my head with the upcoming arrival of our son - can I do it?
• I just overall fear my future..

You may wonder what is with all this talk of death. The death of my daughter is eminent. I do not know when or where it will occur (oh the proverbial grey area I so love - not) but it will happen and unfortunately for us, it is sooner rather then later. Kennedy has not been the same since October. We are witnessing a heinous disease destroy our daughter before our very eyes. It has taken away so much - it has wreaked havoc on her tiny body and it is just getting worse and worse.

We met with our amazing Neurologist this week and I think we have come up with a solid plan to lesson Kennedy's agitation and keep her more comfortable. Kennedy has been battling with increased seizure activity the last couple weeks (as a good reference point she has not had any seizure activity that we were aware of in over 6-9 months) and has become increasingly more irritable on a daily basis. We brought another seizure medication onboard (she is now taking a combination of Keppra and Lamictal) and so far the two seem to be working together cohesively and Kennedy has been seizure free since the week prior to Christmas. Treating the agitation becomes a little more tricky. Due to Kennedy's low muscle tone and decreased respiratory drive we have to tread lightly when trying to prescribe sedatives. As of now Kennedy is starting an extremely low dose of Ativan which is meant to try and relax and relieve her agitation. With such a low dose, it leaves us room to adjust the dosage if necessary.

Well enough with this depressing medical mumbo jumbo. Below I put the rest of our 2010 Family Pictures. It will probably be one of the last photo shoots we have before our newest addition arrives at the beginning of May. To see more of our amazing photographers work check out her website here.

Drum Roll Please....

Sunday, December 12, 2010

(Bonomo Family - Christmas 2010)

Before I get to the good part - A little sneak peek at our 2010 Christmas Pictures. As most of you know we have the most amazing friend and photographer - Jennifer Bagwell. She has such instinct for photography and she is absolutely amazing with Kennedy and all of her special needs. She is always going out of her way to accommodate our family. Jen remains one of Kennedy's biggest advocates. She is always lending me an ear when I need to vent or just talk out my struggles and for that I am forever grateful. She is never judgmental and is always telling me how amazing and inspirational I am, which I won't lie is so nice to hear at times. She even named her daughter after Kennedy - Isabella Kennedy Bagwell. Anyways check out more of her work by clicking here!!!! Our pictures turned out amazing - I will post the rest of them in another post.

For the longest time Brian and I have battled with the decision of growing our family. Due to the fact that Kennedy's disease has a 25% reoccurrence rate we felt torn. We knew we wanted to expand upon our family, but also knew the inherent risks that would lie ahead. We did not want to bring another baby into this world that would be afflicted with same heinous disease as Kennedy! With a clear heart we could not consciously go ahead knowing the potientially negative outcome that may result.

We pondered and pondered for what felt like forever. Not only would the decision to have another baby affect both of us individually, but it would also affect Kennedy and our entire family dynamic. Could we handle it? Would it be feasible? Would I be asking to much of my husband? The questions continually flowed through my brain. It is times like these that I wish there was some sort of crystal ball I could ask. So I did the next best thing - I looked within and to God for guidance.

We finally decided to go for it! We knew that adding to our family was very important to us. The fact of the matter is - we had Kennedy because we wanted a family and just because Kennedy has some special needs it does not take away from our initial desires of wanting to grow our family.

We are so incredibly elated to announce that Kennedy will be a Big Sister!!! We are anticipating the arrival of Kennedy's Baby Brother around May 8, 2011. Words can not describe the emotions that I have been overcome with in the last 5 months since I found out I was pregnant. I am ecstatic that Kennedy will be able to take on the roll as big sister. We are anxiously awaiting the arrival of our little bundle of joy and are accepting of the impending challenges with open arms. Because we do not know with 100% certainty that Kennedy has Leigh's Syndrome (doctors have been unable to confirm diagnosis via blood) we will not know if this baby will be afflicted. At this time I put all my faith into the Lords hands and hope and pray for the best. I do not have any inclinations or instinctual feelings that anything is wrong at this point but I approach this as I try to approach everything else in my life, full of positivity and optimism.

(Our newest addition - Baby Boy Bonomo due May 8, 2011)

A New You

Sunday, November 28, 2010
Life is ever changing. It becomes very hard to get accustomed and develop a routine when what you thought was "normal" yesterday has become a thing of the past twenty-four hour later. We have experienced a rough couple of months. Back at the end of September Kennedy was becoming very irritable, crying non stop, and showing signs of respiratory distress. It appeared like we were in for the long haul. We immediately made an appointment with her Pediatrician and were told based off Kennedy's increased irritability, breath sounds (wheezing and crackling), and green secretions - Pneumonia was a brewing. We were prescribed antibiotics and some inhaled steroids with the hopes we could kick this before it got out of control.

It seemed to take about five days before Kennedy began to feel a little better. I was in shock how fast we were able to get this cleared up - or so I thought! Several days later she took a downward spiral. She was having severe chest retractions (which for a child with no muscle tone is almost impossible to do) and her saturations were holding steady in the low 67-71 range. To put this in perspective, Kennedy's normal resting saturation levels have always been 91-93. I began to panic a little. I made the call to increase her oxygen levels to 1LPM and have her on it around-the-clock.

In the meantime, I called her Pediatrician and we were able to get an appointment that afternoon. Kennedy's secretions had subsided, however, she was visibly struggling to breath, exhibiting constant grunting with every breath, extremely irritable, and looked completely wiped out. We were sent immediately to the lab for a chest x-ray which showed severe left lung atelectasis. Which just means that her alveoli had collapsed, thus allowing for inadequate gas exchange and decreased saturation levels. In addition, her left middle lung showed extreme haziness on the film, so much so that her heart was not visible through her left lung. This was a sign that the pneumonia was not cleared with the first round of antibiotics. We consulted with her doctor several hours later and were prescribed stronger antibiotics, more inhaled steroids, and a decongestant.

We discussed the plan of action should Kennedy take a turn for the worse. It is well known by all of Kennedy's doctors that we are against going back to the hospital. Under no circumstance will we ever admit Kennedy back into the hospital. We have DNR's signed and a pallate of care set forth. My doctor is extremely supportive of our decisions. In addition, if need be he could have a doctor out to our house if the situation progressed further. Kennedy follows the saying, "slow and steady wins the race". It appeared that we did it. Kennedy fought off pneumonia again (oh her poor lungs must look like a 90 year-old chronic smoker with severe emphysema).

Even though Kennedy was able to successfully overcome this bout of Pneumonia it has left its mark. Well actually, I don't know if this last sickness has left her transformed or if her overall disease has progressed more so, and thus, has left her changed forever. It is sad.....Sad to look back and see the little things she had slip away. We have watched the events of yesterday become a thing of the past. The Bonomo family has learned to adjust, to become flexible, to always expect the unexpected, and to arrive at the realization that tomorrow is not a guarantee. We are in constant transformation and at times when we feel like we can not take it any more, we are able to step back and look at our daughter and know that if she is able to wake-up and fight everyday then so can we!!!!!

I am Back!!!

Friday, July 30, 2010

After taking a nearly 5 month blogging sabbatical - I am back!!!! There have been numerous reasons for my break (I will get to those in subsequent posts)! Kennedy is doing great! She is growing and has managed to stay sick free! We reached a huge milestone since I last posted....On June 3rd 2010 we celebrated one year hospital free! I can still remember the night we were discharged. Due to the persistence and little bit of convincing by Laura (Kennedy's Primary PICU nurse) and I we were able to get Kennedy discharged only 72 hours after extubation. Almost every doctor in that hospital expected us to be back within the month and others assumed we were taking our baby home to die. But true as form - Kennedy had other plans. So I would like to say again - Congratulations Kennedy you are nothing short of a miracle.

Now on to the topic I am sure you are all waiting for.....We were consulting with several doctors down @ UCSD Rady Children's Hospital back in April. We were referred to an amazing doctor - leading a world renowned Mitochondrial and Metabolic Research Center. After our initial consultation we were certain that this was going to be it. We were finally going to be given the answers we so rightfully deserved. It was two days before our appointment and I received one of the most upsetting phone calls - the hospital had lost all of Kennedy's blood and had mishandled her urine! To make matters worse the lady proceeded to ask how soon we could get Kennedy back down to USCD to redraw the labs. Lets recap here.....the amount of blood that was required in order to run all of these tests was bordering the maximum amount of blood they typically withdrawal from someone Kennedy's age. For about a month after the blood was drawn Kennedy was paying the price. She was not herself and you could tell something was wrong. She was very irritable and having a lot of breathing issues (her Pediatrician figured they probably overdid it and these were the repercussions we had to face). Lucky for us it took about a month for Kennedy's body to recoup and bounce back. In addition, the urine that was some how mishandled took me over two weeks to collect. Lets just say trying to have a two year old with no muscle tone pee in a bag is no easy feat.

We have had several (more then I care to admit) vials of blood go missing, but why did it have to be these vials??? I was absolutely devastated that this had happened to us. I am normally very good at staying grounded and not putting all my eggs in one basket but this kind of broke me. I kind of wrapped my future plans into finding out the results of these lab tests. So as it stands today Kennedy is still diagnosed with Leigh's Syndrome with Encephalomyopathy based off her MRI results, but nothing has been confirmed via DNA. We will not be re-performing the lab tests. We have accepted that we were not meant to find out.

There were so many reasons I wanted answers, but the biggest one of them all was because I really would love to have another baby. These tests results would have allowed us to know exactly what the odds were of this happening again. My husband has made it abundantly clear that under no circumstance does he want to potentially have another baby like Kennedy and I do not blame him for feeling that way. I actually agree with my husband. It would be completely irresponsible and selfish of us to bring another life into this world knowing the odds that he/she could be afflicted with Leigh's Syndrome. As it stands right now we have a 1 in 4 chance of having another baby with Leigh's Syndrome. Those are extremely high odds and if it were to happen that we got pregnant and had another baby like Kennedy it would not be fair to us, Kennedy, or the new baby. I could never knowingly bring a baby into this world and have them be afflicted with this disease Kennedy has - never! Having a child like Kennedy is probably one of the most challenging things I will ever have to deal with in my entire life. It affects you mentally, spiritually, emotionally and physically.

At times you feel ostracized. Like you exist in this world all by yourself. The last 6 months have been extremely hard for me. Kennedy has digressed - she has a lot of issues managing her secretions. I have to suction her all the time and the night times are particularly a disaster. She is up every couple of hours and has increased seizure activity during the times she transitions from being awake to being asleep or vice versa. At times I surprise myself at how well I am able to adapt on such little sleep. I guess you do what you have to do - and I would do anything for my baby!

Closet of Dreams

Wednesday, March 24, 2010

We have received some exciting news in the last month. My sister is having her first baby and her boyfriend just got a job in California and will be moving down her in a couple weeks. While they are looking for a house they will be staying with us. In this exciting time in there lives I feel sadness. As I prepare my spare room for their arrival I come across the guest closet. It is never used and remains closed. Concealed behind the doors lies broken dreams, wishes, hopes, and a life of normalcy (something we do not often pay thanks for and is so often overlooked by others).

We were given no inclination that Kennedy was sick while I was pregnant. I went through my whole pregnancy being told by the "professionals" that everything was "normal". I had a typical baby shower - okay it was a big baby shower, but she was our first! I received tons of toys, clothes, baby essentials, jumper, walker, highchair, playpen, table/chairs etc....When it became apparent that Kennedy was far from "normal" we were forced to part with our dreams and aspirations we had created for our daughter. We painfully stored away all the gifts that were unusable to her (which was almost everything we received). The symbolism behind those doors is heartbreaking. The irrational side of me wanted to get rid of it all. I wanted no reminder of what I had lost and what I will never have with Kennedy. The logical commonsensical side thought towards the future and the what if's and someday' s . As usual the more rational side won out. It will always be hard to go through that stuff! But we continue to move forward and search-out the positives. I am determined that this disease will not beat us as a family. It has become an annoyance we live with daily but it will not come out on top.

We are still anxiously awaiting our follow-up appointment with Dr. Haas. Do I think we will get the results - the positive optimistic side says yes. I believe we will finally be rewarded with an answer after 20 long months of patiently wading through diagnosis after diagnosis. I know the results will tell me that Kennedy has a disease, either Leigh's Syndrome or Molybdenum Cofactor Deficiency and that it is NOT maternally inherited. On the other hand, the pessimistic cynical side (the feelings I think that most of us as a society would like to dismiss from our minds) feels there is a small possibility that the news bestowed upon our ears on April 20th will change our existence forever. Kennedy will have a maternally inherited disease and every child I ever have will be bequeathed with this heinous disorder. Only God knows but we will face April 20th with courage and strength. It is very comforting that no matter what we hear I will be supported by my husband, my mom, an amazing family, and awesome friends.

(Christmas 2009 - The Bonomo's)

The Strength of an Egg

Thursday, February 25, 2010

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!

If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty, though, parents of [medically fragile] kids will pick themselves up and put themselves back together again.

~~ by Juliet Freitag ~~

Waiting

Thursday, February 25, 2010

The art of waiting......It has become a trait that I have learned to master. Waiting for test results, waiting for answers. At this time, waiting is a word that defines my life, my existence. While I lay in bed at night I eagerly wait for morning to come. Since Kennedy has been born I suffer with severe insomnia. It is so bad that I dread night time. I dread getting into bed and having to wait there for 6 hours. But why - is it the silence, the peace, the calmness? I do not know.

Maybe it is because the night leaves me weak and vulnerable. Oh the things your mind can think of when it is idle - scary! And then it hits me, my daughter is dying and I don't know when, I don't know why, I don't even know what from (still waiting test confirmation). I wait. I wait for the day when just one moment, a split second will change my life forever. It will re-write my history and leave me a changed person. So, I wait.......