I once had the privilege of meeting a beautiful baby girl named Jordan. Through my Infantile Spasms support group, I met a mother who was also traveling to Detroit for the first time for the full work up requested by Dr. Chugani. Jordan was about 9 months and Sophie was about 11 months. We met in the airport and my heart immediately went out to her brave mother, Leslie, who had traveled alone with her daughter halfway across the country to try to find some answers. She was determined to find out as much as she could about her daughter's condition and to give her the best medical care possible.
Little did I know that the amazement I saw in this mother was only a fraction of what Leslie and the rest of her family did for this sweet little girl. Unfortunately, her original blog was deleted or else you would be able to read and see for yourself as I can not give the things they did with this beautiful little girl justice. But one memory stands out...the beautiful pictures they took of their hikes through mountains with Jordan in a backpack carrier. They loved her with all their heart and she was as much as part of their family as any little girl could be.
With a heavy heart, I must say that they had to say goodbye to their sweet little girl this morning. I pray for peace in their hearts as they travel through this sad journey.
Reposted from Leslie's blog...
Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 04:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.
Little did I know that the amazement I saw in this mother was only a fraction of what Leslie and the rest of her family did for this sweet little girl. Unfortunately, her original blog was deleted or else you would be able to read and see for yourself as I can not give the things they did with this beautiful little girl justice. But one memory stands out...the beautiful pictures they took of their hikes through mountains with Jordan in a backpack carrier. They loved her with all their heart and she was as much as part of their family as any little girl could be.
With a heavy heart, I must say that they had to say goodbye to their sweet little girl this morning. I pray for peace in their hearts as they travel through this sad journey.
Reposted from Leslie's blog...
Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 04:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.
Leslie, Devon, Avery, & Birkeley
1 comment:
Elaine,
Thank you for being a part of our lives. Your kindness in Detroit, and since, has meant a lot to me. Thank you also for sharing our Jordan with your family, friends, & followers. You are a blessing for Sophie & Elsa, and all of work and dedication you give to Sophie is pale compared to the love you give her. Which is immense. She can do all she can because of you! You're a wonder. With love, Leslie
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