As you can imagine our hearts are broken and yet we want to enjoy the days and time that we do have with our precious boy. That is why I have chosen to do "A Day in the Life of Daniel". My goal is 1000 days. So for the next 3+ years, Lord willing, I am going to record a picture or video clip of our little buddy. We know that the Lord could have him live to be 87, to which my big boys have said that I will be going over to Daniel's house when I am 119 to take the daily snapshot. :-) Oh, how I do hope this is the case. But unless the Lord would choose to miraculously heal our little boy, Daniel's disease is terminal. Seeing him reach age 5 would be a gift! I surely hope he surpasses all numbers and expectations, but knowing what we know we want to live life intentionally. We want to remember each day we are given. Our family blog seemed like the natural place to record this.
Today's picture is how I found my man and little guy when I returned from a run. Brent was reading Isaiah to Daniel and Daniel was happy to see me (not that he wasn't enjoying daddy's reading too!) Such a sweet boy and SO easy to make smile.
7 comments:
You are in our thoughts and prayers. The prayer chain from FEFC came so we have already been praying. Vic & Marilyn
Ahh, Jaci...tears are streaming as I read your post. Daniel is SO blessed to be a part of your family! How wonderful and amazing it would be for him to have 87+ years with you all (and I can just imagine you snapping up pics of him at the spry age of 119!) - only our Father knows... We will most definitely continue to pray for you, your family, and for sweet little Daniel! May our Lord uphold you in His perfect strength...you are LOVED, Jaci, you are so loved! Sending lots of hugs and prayers your way!!! Love, Lori & family
Jaci,
I am a friend of Michael and Julie Davis and we have been praying for you and your family for several months now. I am so sorry to her of Daniel's diagnosis, but have been so blessed by your blog. Although our journeys are not the same, I understand your joy and your sorrow. 10 years ago yesterday, my first born son, Matthew, was born and then entered heaven. He was diagnosed with Trisomy 13 when I was 19 weeks pregnant. Trisomy 13 is a fatal disease and there is no treatment. We did not know how long Matthew would live, but chose to celebrate each day we had with him. Unfortunately, his life on earth outside of the womb could be measured in minutes and not days, weeks, or months.
I love the idea of your blog, of celebrating life in the midst of such difficult circumstances. I remember the day that my son was born and died. It was the most difficult day of my life, but one in which I felt great joy as well. Never had I relied on God more and never had His promises been more true than when I relied completely on Him. I would never have chosen to walk through that journey, but I would not change it as well.
You and your family will continue to be in my prayers daily!! I pray that you continue to feel God's perfect peace as you walk each day with Daniel. He truly is a gift from God!
Kristi Street
I love you, friend!!! I can't wait to come here everyday and check out the great pics and stories and videos of Daniel. What a precious idea. With tears in my eyes I can't wait to see how God continues to use Daniel's life for His glory. Praying for you daily, friend. Love you and sending you big hugs!!
Jaci, thank you for sharing this and I also have tears streaming down my face. We are praying for Daniel, for your family and I have linked your blog on my blog and asked others to follow and pray for Daniel. You are amazing mother and Daniel is so blessed to be a part of your family.
Katie (Lukens) Pinke
Oh, Jaci, how my heart breaks for you and your family. I will continue to constantly keep you in my prayers and ask our good God to uphold you, help you, and strengthen you. Thank you for being such an inspiration through all of this heartache and always giving God the glory! Love, Sue PS. Your pic of Brent and Daniel is precious!!!
I love your passion to, in light of what you know, "live life intentionally." Lord, may we all live that way. Thanks for using Daniel as a reminder to us all. I love you! Lynn
Post a Comment