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!!!!!