We are blessed, I know that — we have amazing friends, neighbors and a wonderful family — beginning with our siblings and their families, aunts, uncles, nieces, nephews, cousins to my four beautiful children — Beth&Sam, Stan&Sherri, Danny& Cathie, Jenny&Mike and the blessing of our 13 grandchildren — Kaylob, Sammy, Will, Lucas, Hunter, Devan, Cailyn, Kane, Drew, Molly, Brady, Declan and Cole.
We are blessed to have been part of this past year with Declan. We moved back from NM and bought a house in VA only a few short weeks before the twins were born. Stan and Sherri graciously opened their home to us while we waited for our house to be delivered. Although they were happy for the help in those first months after Declan and Cole were born (not sure they wanted all the advice that came with the help — the gift of those months was to us and not to them. The memories of this past year will be with me forever — the joys of holding and caring for Declan and Cole from the very beginning. So many memories –coming home from work to those joyful babies, helping with those middle of the night feedings — the groggy laughs Judy and I shared with Stan and Sherri at 2AM, watching all the boys — Will, Brady, Declan and Cole grow and change, their tolerance of my many songs, Declan‘s first belly laugh, his smiles, he was so full of smiles and laughter. How do I keep those good times, smiles and memories close to my heart without all the sadness that goes with them? God has a plan I tell myself.
We are blessed to have had some very joyful days over the past 5 months since Declan was diagnosed. With all the lows, there were the highs — Declan’s good days — his smiles, how Will could make him laugh just by saying his name (and we all tried to imitate Will and get that same laugh from saying “Da, Da, Da, Declan“). Declan’s joy when all the boys were visiting — his interaction with Brady and his pensive looks at Cole when he would chatter away. The memory of seeing Declan in Houston listening in amazement to him squeezing his giraffe Sophie — he was so proud of himself when he could make her squeak using both hands. How cute it was when Declan would light up when a female walked in the room, he flirted with all of them — his eyes and smile would light the room. Our daughter Beth, our research specialist, was beside herself when she was told it was AT/RT but I knew it would be okay — I had faith it would be okay. How do we maintain our faith and our determination to help other families dealing with this horrible disease? God has a plan I tell myself.
We are blessed, to have had Declan’s story touch so many people and to have received the most amazing support from so many — friends, neighbors, family and strangers. Even today, the deeds, messages, prayers, songs that uplift us when we are in this abyss of misery — that support has been the mortar that has kept us from falling apart on so many days and continues to uplift us now. One said that you could see the beauty of God’s face in Declan’s eyes — those beautiful eyes. How we insure that these people know how much their support and meant and pay it forward? God has a plan I tell myself. We are blessed by Sherri and Stan, watching them weather this storm with amazing grace and fortitude despite the torture of their hearts. Watching them with determination gracefully demand and be the best possible advocates for their child in the worst of circumstances — what they learned about AT/RT and everything that comes with it was mind-boggling. My heart aches for Sherri, Stan, Will, Brady & Cole. How do we help them heal and navigate this quaqmire of emotions now and in the weeks, months, years to come? God has a plan I tell myself.
So where to for now, I think we are blessed to have had Declan for even so short a time. Declan was premature so I know that it would have been easy to have lost him then and never have had that all to short a time with him. So for now I tell myself that we will have to hang onto that — the fact that even though his time was short, the gift of Declan was huge. Hang on to the blessings we have, the memories, the gift of Declan’s goodness and smiles, the gift of our family and the tremendous support by so many people. Hang on to the positives in this journey. I know Sherri will have much more to say — there is so much more for her to say and I think that is part of God’s plan that will help us heal.
Matthew 5:4 Blessed are those who mourn, for they will be comforted.