Alexandria continues to fight her cold. I was certain on Saturday that she was winning and getting better, her color was better, she was breathing better, etc. However, yesterday her color was very gray for a good part of the day and she was weak. She started coughing late last night and this morning (3-4am) she’s coughing a lot more. Beginning around 3 she was very wide eyed, coughing right when she woke up, but peaceful for the most part. She has the most beautiful eyes.
Aden and Gabriel returned home from grandma and grandpa’s house last night. Gabriel came over to Alexandria just before bed to “pet” her, and as I was getting Ethan to bed he came in to hug him. He’s a very loving kid, such a large and open heart. I am so afraid of how this experience will affect him, but am hopeful God will continue to hold his heart open through and beyond this experience.
I’ve been reading more and more stories of families that have children with Trisomy 18 that are surviving/thriving even after their 1st birthday. I realize that the statistics are against us, but we’ve never been one to follow the bell curve… I asked Kim tonight when will we decide that she’s not dying, but living… when will we decide she’s not in hospice any longer. I almost feel manic at times. I have moments of pure clarity that she’s going to be fine, like now, after seeing her fight so well against this cold and look at me with those huge blue eyes. It’s almost like she’s telling me, “I’m not going anywhere dad, you can go to sleep, I’m fine.” Then there are moments, similar to 24 hours ago when she’s breathing shallow, grey, that I am convinced she really is leaving sometime soon. Extreme highs of love and joy, holding her, spending time with her are coupled with devastating lows… you can feel your heart tear a bit. The stress that goes with those swings is palatable, tiring.
I know that families, marriages, can be destroyed by situations like this. Kimberly and I know quite a few families that contain children with special needs that have broken apart. A few people have written me to caution me, to guard against the stresses that can occur, and I appreciate that. I’m not going anywhere. They are everything to me, and I appreciate the concern from those looking out for us. It’s not to say Kimberly and I don’t have arguments, or that we don’t snap at each other from time to time, we’re a normal married couple. Prayers for strength are greatly appreciated. I pray often that God will help me be a good father, be a good husband, to be what they need me to be.
At some point I should probably go back and re-read most of these posts and fix the spelling/grammatical errors… Kim tells me that my sleep deprived posts aren’t always spot-on…. I hope the message gets through though. 🙂
Doug/Kim,
My daughters, Melinda and Rachel, were four-years old when our son, David, died shortly before his fist birthday. While it was very confusing and traumatic for them, especially with the communication issues because of Rachel’s deafness, they grew to be compassionate and empathetic women who have always had an awareness of the fragility of life. That awareness has allowed them to deeply appreciate their blessings and each has focused their professional lives to helping others. Melinda teaches alternative education students and Rachel teaches psychologically impaired deaf students.
I hope this helps in some small way to alleviate some of your anxiety about Gabe…
I continue to hold your family in my thoughts/prayers.
I believe those families who split apart would have split apart even if they would have had a healthy child. You and Kim have a solid relationship that others can look to as a model. Hang in there! You are both doing a great job as mom and dad to 4 kids!
Doug and Kim, It’s Amy Piscopink Taylor.
I am reading this blog all at once tonight. I knew that your daughter had arrived when Heather GH shared the news. I’ve been thinking and praying for your family all these days.
I know that Alexandria’s sweet, brave spirit has left her body now. But this quote still holds true: “I’m not going anywhere dad, you can go to sleep, I’m fine.” Continued throughts and prayers for you all.