Sunday, June 27, 2010
Days after Daniel passed away, we knew in our hearts that we wanted another child. We know that we can't replace Daniel--nor would we want to. Daniel was a very special child who left a mark on us that we will carry forever--a mark of hope, a mark of love, a mark of faith. We are better people because of him.
We do feel very strongly that we have the love to give to another child, and we believe Daniel would want that for us. We know that he will be watching over us for the rest of our lives. And so, we have begun the process to adopt again. Our path seems to be taking us back to China, back to bring another special needs child home to share common roots and heritage with big sister Madi. It will take time to go through the rigorous paperwork and waiting game, but we have the support of our kind and wonderful social worker and of our adoption agency. They have been very gracious and understanding with our situation.
Once again, we invite you to join our family as we embark on a new journey--a new journey of hope, a new journey of love, a new journey of faith. Our journey to become a family of five.
Thursday, June 24, 2010
It seems that Daniel's lungs just couldn't adjust after his corrective surgery had taken place. Although the surgery was a success, it appears his heart and lungs weren't used to the pulsations that occurred with his new and improved heart function. His lungs began to fill with fluid but not at an alarming rate. In fact, the X-ray they took at 3:00am the next morning was not alarming. The blood gas tests were not even alarming until about 6:00am. In hindsight, he likely had a pulmonary hemorrhage that filled his lungs with blood, in addition to the fluid, making it more difficult for him to breath resulting in the cardiac arrest at 8:00am. Could they have done things differently? Maybe. Maybe they could have put his tube back in sooner, but again--there was nothing alarming that indicated it was imperative to do so at that time.
Daniel's immediate cause of death was abdominal sepsis. On top of all of his other organ issues, his intestines suffered one of two problems. He either had a perforation of an intestine or part of his intestine had become gangrenous and ruptured. We will never know which one occurred, but it was quite obvious that the increased swelling in his abdomen on Saturday and into the night was very serious and sent him into cardiac arrest for a second time. They saw an abdominal issue coming on and performed tests to find a problem, but we are told that the intestines are kind of a "dark horse" in the medical field and there surprisingly aren't many ways to detect these problems early on. They also progress very quickly. The only solution to this problem would have been emergency surgery. We are not so sure that Daniel's body would have made it through the surgery. He was still on a ventilator, kidney dialysis, and heart pacers. It would have been an uphill battle for sure. It would have meant going back on the ECMO machine, more anesthesia, etc., etc. We believe that the Good Lord gave Daniel the easy way out.
Daniel's surgeon was very "human" today, as always. We feared that he might be on the defensive given Daniel's outcome, but that wasn't the case. He answered our questions honestly, thoughtfully and very professionally. We found our peace in attaining knowledge about his condition, even knowing that different steps in his treatment may or may not have affected his outcome. We will never know. The fact of the matter is that these doctors are people. They are not mind readers. They are not perfect. They are not God. We watched them give Daniel everything they could. We felt their pain in losing him.
The most peace comes from the answer to our most important question. We wanted to know if they learned anything, if not multiple things, from Daniel's case that might save the life or lives of future children. The answer was yes. They learned more than a few lessons here. They've already made changes in their processes and in their thinking patterns. They might even name one of their new practices after Daniel. The staff members who knew Daniel, and loved him, have promised us (and Daniel) that his death will not be in vain. He has left a legacy at that hospital that will make a difference.
Now that, my friends, gives us peace...
Wednesday, June 23, 2010
This week brings a lot of mixed emotions. Tomorrow we are heading down to Miami to meet with Daniel's surgeon. The night Daniel passed away, his surgeon said that we would probably think of many questions to ask once the dust settled. He was right. I don't think that 'closure' is necessarily the right word for what we are seeking. I think we are looking for peace. We hope that we can learn a few things that will give us peace. We realize that some of our questions probably can't be answered, but that's okay. We'll try.
On Friday, we are laying Daniel's ashes to rest. We chose the Mausoleum in Boca Raton where Jimmy's Grandparents are buried. Uncle Bill's ashes are also in the Mausoleum there. My Father-in-Law had never laid Grandma's ashes to rest last year when she passed (one year ago tomorrow), so appropriately we are placing Daniel's urn in the same niche with Grandma's urn. They are in Heaven together, and now their ashes on Earth will be together as well. That is something that truly does give us peace.
Monday, June 21, 2010
Wouldn't you know Daniel paid his first girlfriend, Julianna, a visit last night in her dreams. Her description was so sweet that it brought tears to my eyes. She said he looked the same but had a huge smile on his face. She also said his eyes looked really big and very bright. She woke up feeling different. I am so happy for her because she's really been struggling. I told her next time to please send him home to his Mommy!!!
Thursday, June 17, 2010
Before the end of the school year, Julianna Debonis announced the idea to her classroom, and the next day another student brought in a gallon-sized ziplock bag full of pop tabs. The family had been collecting them for a year or so. We will make our first delivery next week. Not a single can gets by Madi these days without inspection!
For more info, go to: www.rmhcsouthflorida.org
Monday, June 14, 2010
That is just one of the imprints Daniel made on my heart. I never used to pay attention to nature like I do now. I hear every bird chirping. I find myself really listening to their beautiful songs. I notice every bird soaring up in the clouds. And I picture our little angel, Daniel. I can't help but smile.
Thursday, June 10, 2010
"How are you getting through this?"
We have been asked questions like these so many times while Daniel was in the hospital and after his passing. The answer is always the same--By the Grace of God. You would do the same. I was reminded of a quote today that I chanted in the hospital quite frequently to calm myself: "The Will of GOD will never take you where the GRACE of GOD will not protect you." These words are so true.
I have been meaning to post this story for about a week now. Some of you were able to attend Daniel's reception and heard me speak about my life-changing moment in faith, but many of you weren't, so I feel it's important to share the story of Dana and Stephen with you.
About six or so years ago, our friends Dana and Steve lost their six-year old son, Stephen, to Leukemia. It had been a valiant battle, but Stephen was destined to move on. I remember arriving at his funeral and seeing hundreds of people sobbing, some having trouble holding themselves up. And then there was Dana. Dana, the Mother of Stephen, approached the altar and proceeded to speak the most eloquent and faith-filled words. She literally comforted the hundreds of people in attendance.
I remember watching her in awe, asking myself, "How can she possibly be so strong?" The answer was clear--by the Grace of God. Dana was divinely embraced. She gave testimony about her son's sickness and how her job as a Mother was to do what was right and necessary for her son. Seeing him suffer was not an option. And so she let go of her little boy and watched him go to Heaven.
Dana changed my heart that day. That was the day I, and others I know, decided to find a church home. That was also the day I knew I wanted to be a Mother. Despite the toughest loss imaginable, I could see right through her pain to the unconditional, selfless love that Dana had for Stephen. I longed for that relationship with a child, and I longed for that relationship with God. I wanted that faith. I wanted that unwavering and profound faith that could get someone through anything.
Fast forward six years and here we are. I am now that Mother saddened by the loss of my son, but I am also the Mother who is divinely embraced by faith. Maybe God put us in that circumstance to prepare us for our future. To prepare us for our own journey of selfless love--for our children, and for God. We are inspired that our sweet son Daniel has touched so many people in such a short time and humbled that his story has similarly brought so many people back to their faith. We will never forget Dana, or her family, for sharing their family's love story with us.
Wednesday, June 9, 2010
The morning Daniel passed away, I was able to give Madi one piece of good news that I knew she would look forward to and be happy about. The timing with Daniel's departure to Heaven would allow us to do the SVF Bible Camp together like we've done every year. She'd been talking about it all year, but we had to decline earlier with everything going on in the hospital. Apparently, the camp coordinator had miraculously kept one spot open and wasn't sure just why--until she received our news. She feels certain that it was the Holy Spirit saving a spot for Madi.
The theme for this week is "The Spirit of the Seas", and the first day we learned the story of Noah's Ark. What I had forgotten was that after the flood, God gave Noah the precious gift of a beautiful rainbow as a symbol of God's promise that he would never destroy all life with a flood again. The kids made the cutest little rainbow wind chimes that say 'God keeps his promises.' After receiving the gift of that beautiful rainbow last Wednesday, I took it as the perfect confirmation that Daniel is safe in the arms of God.
Sunday, June 6, 2010
The Mass of the Angels for Children for Daniel was a beautifully special tribute to our precious son. We were so surrounded by the love and sympathy of friends and family. Evidence that Daniel's reach was far and wide.
The music selections were perfect. The Holy Spirit had prompted me to call my friend Noreen on Tuesday asking if she thought her daughter, Bridget, would be willing to sing at Daniel's mass. She called me back saying that Bridget would be honored. I had a personal request for just one song called "We Are One Body, One Body in Christ". As fate would have it, Bridget knew the song well and actually sang it at her middle school graduation ceremony. She has the voice of an angel, and I am still humming that tune today. I can't get it out of my head, nor do I want to. I wish I could record her voice and share it on the blog for you. Maybe someday we'll figure out how.
Saturday, June 5, 2010
What an amazing gift that Hannah had managed to capture, in one short evening, so many sweet and candid pictures of Daniel doing his favorite things--swinging and sliding in our own backyard. These were posted on a board at Daniel's Mass reception, and they need to be shared. The stunning black and white photo of Daniel in the previous post was also taken by Hannah and given to us when Daniel was in the hospital. We had it hanging on his ICU room door.
These photos are like gold to us now.
Thursday, June 3, 2010
"I'll lend you for a little time
A child of Mine." He said.
"For you to love the while he lives
And mourn for when he's dead.
It may be six or seven year
Or twenty-two or three
But will you, till I call him back
Take care of him for Me?
He'll bring his charms to gladden you
And should his stay be brief,
You'll have his lovely memories
As solace for your grief.
I cannot promise he will stay
Since all from Earth return,
But there are lessons taught down there
I want the child to learn.
I've looked this wide world over
In my search for teacher's true,
And from the throngs that crowd life's lanes,
I have selected you;
Now will you give him all your love,
Nor think the labor vain
Nor hate Me when I come to call
And take him back again?
I fancied that I heard them say,
"Dear Lord, Thy will be done,
For all the joy Thy child shall bring,
For the risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known,
Forever grateful stay.
But should the angels call for him
Much sooner than we planned,
We'll brave the bitter grief that comes
And try to understand."