Sunday, September 11, 2011


Today I am writing the first post in 5 months since Bella passed...not because I haven't wanted to but because I just couldn't

Today I admit that I haven't been able to process the emotions of it all...if you have talked to me in the past 5 months I have probably told you other wise

Today I admit that I have ran...ran from the sadness ,ran from the memories, ran from the pity, ran from the little and big ways it has changed our life forever. Today I must start to learn how to deal with these things

Today I just miss her...Today is Sunday and Sundays were always our day. It was the day that I could go to the hospital and be with her without the demands of the outside world

Today I question what we are really doing with our life that is truly a testament to her life and all that she has taught us...

Today I think back to around this time last year when she was starting to come off of the ventilator, I think of those moments when she breathed on her own and how precious each breath was

Today I acknowledge that somewhere there is someone who suffers more than I and that my situation could always be worse..I know that if I could start to help others, it would in turn help me

Today I crave the touch of her skin, to cradle her in my arms and to have her little fingers clasped around mine. I want to share a song, a book and some sunshine with her today

Today I wish that others that I love could see the hands of God working in their own life and many of their own miracles unfolding before them. I wish that I could help them see how precious each minute of each day is

Today I just wish that I could slow the world down a little...I struggle to keep up these days because I just don't see the need to speed ahead

Today I am so incredibly thankful for the grace of God and knowing that He feels my pain right now

Today I need to feel, I need to talk, I need to process... I know that if I don't do these things they creep into my subconscious with flashbacks and nightmares

Today I will allow myself to I will force others to allow me to grieve

Today I know will not be the same as tomorrow or emotions and scenarios surface every day that I find myself trying to adjust to

Today is that day that every thing can change...thru prayer and God's guidance I can take all of this and use it for the better, I can start today

Monday, April 25, 2011

The Ocean of Grief

As I spend some time reflecting today on our first holiday without the physical presence of Bella I wanted to share with you some of my thoughts.
Over the past few months I have found that there is nothing consistent about grief. It is ever changing and ever present from moment to moment and day to day. Today I was thinking that grief is like the ocean. There are times when it seems so calm and inviting, to completely submerge yourself into it could bring rejuvenation and clarity. You allow yourself to grieve openly on those days, you allow yourself to remember, to talk and to long for because you know you are safe to do so. There are other times when it is stormy and choppy, the red flag waving and warning you that if you go there you risk being swallowed whole so you stand on the shore of safety and occasionally stick in your toe to test the waters.
Today was a day where I was unsure of what the ocean may bring but I dived in head first taking flowers to Bella's grave site, looking at photos and listening to songs that reminded me of her. I needed to submerge myself into it and hope for the best. I needed her. As I sat at her grave and thought of the Easter baskets that would go unfilled, the many beautiful Easter dresses that I longed to buy and the family gatherings that would go unattended by her I was washed away, going further and further into a sea of grief. The memories, the longing and the pain crashing into me and pulling me under. And just when I thought I might be swallowed whole He saved me again. Sending a raft of realization that all of the things that I want to give to her and do for her pale in comparison to the many gifts that she is now receiving in heaven and sometimes shares with me on Earth. Realizations that the overwhelming beauty of the Easter service that filled my heart and gave me an understanding of the true meaning like never before, the tears of happiness that I wept because of this new understanding, the amazing view that I beheld later that day while lying on a rock by a waterfall with my husband as the sun peaked thru the trees and the beautiful Easter lillies that decorated the church given by our friends in her memory and now will continue to grow in our yard....these are the gifts that take the place of the Easter traditions that I long to share. These gifts are enough for today and are a testament that God's grace is sufficient.
So back on the shore of safety I am a little worn, a little beaten but now that I have faced the storms and submerged myself into the ocean of grief I can fully enjoy the view, the calmness of the waters again and the peace of the sunset.

Hoping that all of your Easter celebrations were peace filled and the beauty of the true meaning touched your hearts like never before.

Much love to you all

Wednesday, April 6, 2011

Our life today...

I have sat down to write many times over the past few weeks and the words just haven't come. I have wanted to fill everyone in on how we are and talk about the process a bit. But nothing came. It was just a few days ago that Chris and I sat down with our pastor (thanks Ken!) and were able to communicate how we are doing today and what this all means to us at this time. It was after that hour of just hearing us say these things out loud and meaning them that I realized we are doing well. So I just wanted to take the time today to share with all of you some of the things we have come to realize and the many ways the Lord continues to bless us.

There were several weeks following our return from the beach that I remained lost. I just went thru the motions with no real enthusiasm and very little motivation. I remember worrying that maybe this is how life would be from here on. Nothing with the exception of Dylan was as fulfilling as my days spent with Bella and watching her progress and grow. Nothing still is but I am learning to live with that void. I literally prayed my way out of bed in the mornings and completely relied on the Lord to carry me thru my days. Those were some long days. The early stages of grief is the hardest work you will ever do. It is exhausting and excruciating. It is lonely, hollow and empty.

I feel very blessed that we were able to move thru those early stages of grief rather quickly and have come to find peace & joy again in our life. Chris and I have discussed this and we agree that our sense of loss is different than most that grieve. Our gratitude and realization of just how blessed we were to have those 9 months overcomes any sense of loss. There is no bitterness, little regrets and peace has overcome all understanding of how and why. And more recently in the past few days or past week I have found that she is still always with me. I carry her throughout my days and her memories and presence bring me joy many, many times a day. I feel her always near and I never thought I would get to that point because I missed her physical being so much.

It has been interesting to watch how each of us have changed from this, just instantly we are different people than we were before. I like to think that we are significantly better and look forward to seeing how the Lord continues to change us for His needs. I see how both Chris and I are able to prioritize life and what really matters. All of the little stressers and silly worries are minimal these days. In myself I see that I do things because I really, really want to do them, not because I feel like I should or feel like I have to. That alone has made life more fulfilling and in many ways calmer. In Chris I see how he is willing to drop work in a drop of a hat to be there for me or Dylan. I have found that the moments we spend as a family, no matter what we are doing, are just richer. We prioritize time with friends and family like we never did before. We are blessed with so many that this is still a work in progress but we see the importance of doing it today like we never did before. I have realized that Dylan will never have the "only child" qualities because he will always have to share the love of his parents with his sister. He talks openly about Bella and how he misses her and I have come to realize that even at his young age he will carry her with him forever. I have found myself able to play and let go of responsibilities much easier just to be with him, completely and totally focused on him. Bella has made me think more about being welcomed into heaven than being remembered here on Earth. She has made me really think about the beauty of eternal life and cherish that one day I will be with her again forever.

There are some things that we are going to have to work on over time. There is a hard reality that sets in that life is not permanent and there truly are no guarantees for anyone. In many ways this realization will be the biggest influence on our life here forward. In some ways now it can be debilitating. I have to learn to trust again and live with the fact that my husband or my other child could be taken at any time. Right now the thought of this is crippling and I start to panic if I am away from either of them for a prolonged period of time or if Chris doesn't answer his phone when I call. I think this will calm with time and I am still learning to turn these emotions over to the Lord in prayer and meditation. We have more tendencies now to be over protective of Dylan than we ever did before. We are going to work on these so he doesn't live his life in fear and neither do we. I have come to realize that the Lord does allow you to choose: to choose to live in fear or trust, in sorrow or joy, for tomorrow or for today. The choice is ultimately ours but the blessings from the right choices are plentiful from Him.

There are other questions that have surfaced from her loss like do we intend to have more children? This is something we are not permanently set on today. But at this time we feel like we wanted 2 children, there was never any consideration of 3. We have 2 children. We have a daughter and son when both were never a guarantee with all of my female issues and medical history. I personally think to ask for anything more would be pushing it and far too risky. I would love for us to consider over the next year the thought of fostering or adopting. There are so many children that could bless our lives and benefit from the love we have to give. For now though we are going to learn to live with our circumstances of one child in heaven and one child here on Earth. We have faith that our year in Florida will lead us to the right answers for all of these questions. Where to go, what to do and so on...

We thank you again for lifting us in prayer, for all of the cards, messages, gifts and acts of kindness that you all have shown us. We are blessed to have all of you to share this life with and pray that we will see each of you in the next.

Much love to all

Tuesday, March 15, 2011

And we depart.....

We have decided to call Laguna Beach, Florida our home for the next year. We will be leaving the first of May. We have been blessed with an ideal situation where we can rent the beach home that we have been so fortunate to vacation in over the years while my sister and brother in law rent our house here in Nashville. We made the decision while on vacation but have had to tie up some loose ends here before confirming. Amazingly everything has worked out so perfectly that we are left knowing this is definitely the right decision for us at this time.

While we were away Chris & I had much time to talk. We discovered that although we often expressed ourselves differently and handled our situation differently over the past 9 months, we both walked away with the exact same feelings about what Bella meant to us and what she means to our future. We know we are not the same people we were going into this. We have new goals for life, new dreams and new needs. We feel that instead of struggling to get on with our life as it was before, that we need to embrace all that we have learned and experienced. We need to take the time to find our new purpose in this life. We want to slow down and open up our hearts and minds to God's will for us and allow ourselves the time to heal. We want to invest in memories with Dylan and each other instead of college funds, savings accounts and a retirement plan. We have learned the hard way that memories are the only thing that truly matters in the end. They are the only real solid investment. We don't want that lesson to go to the way side by getting caught up in the hustle and bustle of the life we had before. We have a unique opportunity to go somewhere that will allow us to work towards becoming stronger physically, mentally and spiritually. And hopefully by taking care of ourselves during this time we can return and give ourselves completely to the many causes and needs we have come to know from Bella. We have so many ideas of how we can better ourselves and the world around us from our experience. We have talked of fostering medically fragile infants, adopting a special needs child, starting a non-profit to help those that follow in our footsteps or advocating for a chronic care facility here in Nashville. Whatever we decide we know that we want to do it prayerfully and with full conviction. We believe that as we heal, meditate and open up our lives more fully to the Lord that the answers will come.

Bella's life and death has given us a new set of eyes on the world around us and the life we lead. Hopefully in surrounding ourselves with the unfamiliar we can put this new perspective to the best use. The things that seemed to matter so much before seem of little importance to us now. We would like to think of this as a sabbatical of sorts but we don't have the luxury to stop working all together. We are just going to change our focus to work to live, instead of live to work. For Chris this means only keeping the clients on board that he can manage from afar and travel back to Nashville when needed. For myself, this means finding a job that allows me the time to indulge in the reasons we are moving in the first place while giving us the income needed to live a very minimal lifestyle. We don't need much at the beach and we look forward to challenging ourselves to cut out the unnecessary in the pursuit of happiness. We are moving forward with hope and trust that the Lord will open up the doors of opportunity to make this work.

Our hearts are heavy to leave those that have supported and surrounded us with love throughout this. However we are excited to offer everyone a place to visit and get away from the madness. We look forward to quality time over quantity with our family and friends. Our door is open always, the dinner table set, the waves crashing on the shore and Bella's beautiful smile can always be found in the sunset, so come on down....

I look forward to continuing the blog while away. I am in hopes that our experiences over the past 9 months can help at least one person. I am hoping to reflect and share insight with those that may follow in our footsteps. Mostly I pray that I can share with everyone the many ways that the Lord continues to bless us and guide us. And selfishly I hope to keep all of you near as we continue to heal and learn to live life without the physical presence of Bella. It does and will prove to be a challenge. I also truly hope that thru this blog you will share with us other prayer needs. We WANT to pray for others. We know the power of prayer, we know the comfort in having others pray for you and we need to grow as Christians. We need to be able to give back the most amazing gift we have ever received. Please comment with prayer requests or email them to me at These will not be shared with anyone but our family and the Lord unless you want to share with all of these amazing folks on here that have carried us in prayer.

Much love to you all


Friday, March 11, 2011

Welcome to Holland

This article was sent to me a while ago from a dear friend that always seems to know what I need when I need it. Today I share it with you and dedicate it to my friend, Mollie Shepperd, the most amazing ambassador and tour guide of Holland that I am blessed to know...

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel: It’s like this…..

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy phrases in Italian. It’s all very interesting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy different guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around…….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy……and they’re all bragging about the wonderful time they had there. And for the rest of your life, you will say ….

“Yes, that is where I was supposed to go. That is what I had planned.”

And the pain of that will never, ever, ever go away……because the loss of that dream is a very significant loss.

But…….if you spend your life mourning that fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.

Wednesday, March 9, 2011

And we return....

We returned to Nashville on Sunday evening after spending a full week at a beach house in Laguna Beach, Florida. We are blessed to say that we found some peace in removing ourselves from life as we knew it but even more blessed to report that we also found great clarity to life in general. We had sunshine filled days of doing nothing but playing and just being together. We learned to just be. And with all of the great beauty that we witnessed we also learned that nothing is or was as beautiful as Bella's smiles or her physical presence on this Earth. With that we are left with the question, not why did God take her from us BUT why did He bless us with her for those 9 amazing months? And what can we do with our life from here forward to be witnesses for the many miracles we were blessed with during that time? What can we do that will ever be as rewarding or fulfilling as she was to us? How do we move forward exercising the many, many lessons we learned from her life and her death? We have a few ideas, some definite goals but mostly we know that we just have to turn our life over to the Lord. Fully and completely, trusting that He will lead us each and every day. We also know that these answers are not going to come over night. They are not going to come from a trip to the beach. They are not going to come in returning to life as we knew it. They will come as the healing continues, as we devote time to prayer and meditation and as we learn to trust completely. The answers will come when we have balanced our bodies, minds and spirits.

The strength we have found is not our own. If all I had to depend on was myself during this time then I would not get out of bed in the mornings. I would still be experiencing the gut wrenching, heart breaking physical pain of not having her here with me. I know this because I was there following the funeral. For a few days I shut out God, family and friends. I went to the loneliest, darkest place I have ever been in my life. I saw life without spirituality, without appreciation for loved ones. It is a place I do not wish to ever go to again in my life. It was not myself that pulled me from this place. I did not or do not have the strength for that. It was the Lord that did not leave me, nor forsake me even in the darkest moments. It was the genuine kindness and love of family and friends that pulled me from the darkness of self loathing and self pity. So again we thank you all for lifting us in prayer when we did not have the strength to do so ourselves, for the overwhelming gestures of kindness and love that you have given us. Mostly we thank you for loving Bella and letting her be a part of your life.

There are still good days and bad days, good moments and bad moments. There are limitations for what I can handle in life right now. There are situations in which I choose not to put myself in because I don't trust my emotions. The hustle and bustle of life around us seems overwhelming at times. There are moments of guilt in moving forward without her. There is and probably always will be a craving to touch her, see her, smell her. There are moments when I close my eyes and picture every fold of her skin, every scar, every detail of her face just because I am scared of one day not being able to remember those things. But mostly there is hope. Hope that there is life ahead that will always be a testimony to the beauty of Bella...

We love you all. We thank you all. We ask that you allow us to pray for you as well. Please let our family know of any prayer requests that you may have or know of.

Much love to all

Wednesday, February 23, 2011

Her final days on Earth...

In the darkness I have been blessed with memories of her final days on Earth. Memories that make me see the beautiful gifts that God gave us before taking her away. Thru these memories I can at least let go of the shock, I can say honestly that somewhere deep inside God was preparing me to let go.

The weeks before she passed I had said many times to myself and others, what can we do to make her life in the hospital more enjoyable. I had a renewed energy after the physical exhaustion of our long term hospital stay that was unexplainable. I told Chris we are starting "operation:get Bella home" I had spent hours researching alternative therapies and treatment for her edema. I thought that if we could get that fixed then we could move forward. Here are a few of the memories of the days proceeding her death...

The Sunday before she passed I awoke that morning determined to indulge Bella in hydrotherapy, something that she had greatly enjoyed during her time at Centennial but had not been practiced since. With permission from the Dr I created my own hydrotherapy set up for her. I found the perfect tub and had the perfect nurse on that day to get it done. She was emerged into a jacuzzi bath where I know her body had to feel lighter and more relaxed. She submerged her hands, arms, feet and legs without a fight and looked at peace. Upon removing her from the water where she was free from tape, wires and clothing, I massaged her whole body with lotion. Then without any help I put all of her wires, feeding tube, trach needs, etc back into place. I dressed her in her signature pink dress and hairbow. I layed a teddy bear beside her that played the sound of the ocean in her ear. And I watched her sleep more soundly than I ever have before. She was glowing, pink & beautiful. My sister and brother in law went by to see her later that night and without knowing about our day they told me how much better she looked and that she had smiled in her sleep at them. That was their last Bella smile.

On Monday she started having some respiratory issues and the edema had moved into her face more. However we were blessed with a brilliant Dr, team of nurses and nurse practitioners that knew her well. With some changes of her vent and prayers from all of you guys she stabilized. I had wanted to do her hydrotherapy again, I had wanted to pick her up and play but I knew that she was uncomfortable so instead I opted to crawl into her bed and snuggle behind her. I caressed her, massaged her, sang to her, rested with her and smelled her. I spent the entire day with her.

The remainder of the memories that week are not quite as detailed. I know that she was cared for by all of her primary nurses that week, they each got the gift of caring for her one last time before she passed. There were a few days where we put her in a swing and she relaxed there for hours. There were massages from Chris. There were snuggles from me. I read her our favorite book. I introduced her to Billy Joel. We opened up the blinds and let the sunshine pour into her room. We dressed her in new dresses I had just bought her for Valentines Day. We gave her lollypops and sugar water. She was surrounded in love every day that week.

The most vivid memory that I have now that should have prepared me for the phone call is this. Every day since Bella was born I have prayed with my hands on her asking the Lord to fill her with light, love and life. Every day I have had a visual image of Jesus sending light from heaven and filling her body. Every day for almost 9 months. A few days before she passed I said my usual prayer with my eyes closed waiting to see the light pour into her. For the first time in 9 months there was no light. At the time I blamed myself for not being tuned in, being distracted, or not being in constant communication with God that day. I told a friend that was familiar with my ritual that I could not tune in. She knew what that meant but I did not until she was gone.

The day she passed I had spent the first part of the day with Dylan at the zoo and the second half with Bella. This was my usual Tuesday & Thursday schedule since Dylan is out of school. One of her primary nurses that loved her so so much was on that day. When I arrived I found Bella in her chair, sitting upright with her princess tiara on her head, adorned in pink of course. She was over the chair after I got there and we got her out for me to hold. My usual holding position is her cradled in my arms, it is the only one she will usually tolerate well and gives me the opportunity to see her face. That day I put her on my shoulder, rocked her and sang to her. She loved it. When I got her back in bed she seemed exhausted but content from the day's events. Once again she slept soundly before I left.
The night that Bella passed we were blessed again with yet another primary nurse that loves Bella so so much. We called to check in before bed and she was doing great, sleeping soundly. My phone rang at 2:30 am, it was Vanderbilt's number. It was a person I was unfamiliar with. I don't know what she said at that time but I knew that this was it. I just knew it. I threw on clothing as Chris desperately tried to find someone that was awake at that hour to come stay with Dylan. I did not want to face this alone but I knew that if I waited for another minute I would not get there in time. I flew thru red lights, stop signs, literally sprinted thru the hallways of the hospital to get to her. This part gets blurry. I arrived to find them doing chest compressions and a full team of code specialists in her room. Everyone was moving fast and orders were being yelled. I fell into a chair. I started to talk to God, begging, bargaining, trying to trade places with her. I wish I could say that I gave her to Him willingly but that is not the case. That is not the case at all and that is the last conversation that we have had since. After knowing that all had been done that could be done, if I waited one more second she would die not in my arms I had them stop. They put her into my arms and she passed a few seconds later and just a few seconds after that Chris was by our side.

These memories show me a kind and loving God that gave us the most peaceful ending to such an amazing life. There were no signs of struggle that week, there were no signs of greater pain, she was stable for her condition. In the end it was her heart that gave out, not her lungs. On her 9 month birthday exactly. We have the security of knowing that she was surrounded that week with medical professionals that did everything they could do for her. Medial professionals that had not given up on her. We let them do an autopsy because maybe it will help them to save another baby in the future. But it doesn't matter to us what the report is, I would rather not know. We know with complete and total faith that it was her time to go, if it had not been then God would have overcome whatever it was as He always did in the past. I owe Him an apology and I miss our daily conversations. I am not mad at God for taking her but I am not ready to apologize to Him either for my selfish needs of having her with me. Our conversations and my prayers will come as the peace and gratitude start to take away some of the pain.

We have been lost since her death. Not knowing where to go or what to do. Just going thru the emotions of calmness one minute and complete hysteria the next. Sleep is not my friend. Dylan has asked several times for God to send everyone back down from heaven. We have no ideas where to go with life from here. We are going to journey to the beach for a while. We are going to try to find some big Bella smiles in the sunshine, hear the sound of her breaths in the waves and take ourselves away from a life that was built around her existence here on Earth. I hope to begin my conversations with God, I hope to be able to see that same light that Jesus poured into Bella for all these months but this time being poured into myself, Chris & Dylan. A light that will bring us back to life, a light that will begin to heal our pain, a light that will lead us down a path of God's purpose for us in this life.

We cannot express our gratitude in words for all of those that came to her service, sent their thoughts, sent their prayers, filled our home with beautiful flowers and good food. We cannot express our gratitude in words for all of those that assisted in giving her a beautiful service that celebrated her life. And once again we cannot even begin to thank all of the nurses, doctors, respiratory therapists, nurse practitioners and surgeons that assisted in giving us these past 9 months.

Much love to you all