Friday, October 31, 2008

Inward warfare

As a teen I ran track, my favorite event being the hurdles. In my head I'd count my steps 1,2,3,4,5...get into my stride hit a rhythm that lifted me off my feet, straddle and land; only to repeat in quick time 1,2,3,4,5 stride, off my feet, straddle and land. The moments over the hurdles were as though I was soaring, seconds w/o gravity holding me down,the wind in my face then tip~tip~tip grab my feet touch the ground; with the gravel beneath my feet 1,2,3,4, my feet, straddle,land until the race was done. The challenge of clearing the hurdle without touching it tipping it or hooking it to cause either me or it to fall was invigorating. It wasn't about winning which I did often enough, rather I just liked to finish a well run race. Not all hurdles can be cleared and not all races are easily won. My track days are long gone and now we as a family are running a much different race. Dr. S said Alyssa cleared a hurdle she's survived 3 months. This is just 1 hurdle of many. While I am joyful, it is also sobering. How are we going to finish the race of my daughter's life?

I thought that if Alyssa survived to 3 months that I would feel better about the given prognosis. I was wrong. I thought that hearing Dr. S say that Alyssa is fragile but healthy would bring comfort. It does but even though I appreciate her opinion that Alyssa looks to be a long term survivor of T18 it's not a lasting comfort. Wouldn't it be hypocritical of me to say "what do those doctor's know..." because she is alive today and surpassed the initial expectations? Yet encase the prediction of her being a long term survivor in certainty because it meets with my hearts desire. This is a lesson, a test in patience, and faith; understanding that I lack control in this situation.

I took some time away from blogging or rather intense blogging because I've been wrestling with so many emotions. I took the advice of a someone I trust to focus on getting adequate sleep, turning to the scriptures for direction/comfort and acknowledging that there aren't any easy answers or paths to take in this trial. At least that is what I took away from our conversation.

I think because we were given such bleak news at Alyssa's birth that while we had hope,our expectation was that she was not going to survive. We were just hoping to be able to bring her home and let her experience our love here before passing. We thought we had days at best, maybe a month. This little spitfire though did something we didn't imagine, she survived. We repeatedly said for this being the worst news ever, this is the best possible outcome so far! She didn't have any apnea episodes, no major health issues with her major systems. No heart problems, or lung issues, up until 2 weeks ago she didn't take any medications except for vitamins!Basically she looks small like a preemie, but a fairly typical appearance. Yes I do see some of the tale-tell signs of T18, but straight away most people don't. I think this tricked us into almost seeing her as well, because we were expecting so much worse.

I found a few T18 babies similar to Alyssa, many who not only survived the 1st year but are old at 19 months, 4 years, 7 years and even 22 years old! On the other hand a few died at 6 months, 9 months, 16 months and 4 years old. So it's that see-saw effect how fully do I rejoice in Alyssa being "healthy" because we know from the experience of others her health could decline in a blink of an eye.

The lack of sleep really affected my handling of this all too. I felt myself draw nearer to the Lord the moment the words T18 entered my consciousness. I feel so blessed to have been given this gift of faith and the strength to endure this unfolding trial. This test of faith as I see it has clearly and most vividly given me proof that there is a living God and He has been at work in me, in Alyssa and our family. It's not just because she is doing well that I know this,the Lord has revealed himself to me. I can't adequately write it out as so many emotions, thoughts and truths are involved. Yet I can say that as a Christian I have grown leaps and bounds since July and I am thankful for this. There is a strong inward struggle that comes along with this growth/realization (at least there is for me) and to counter all the forces in play I need to be consistent in devotions~reading the Bible and mediating upon the words of the Lord and get sleep. Lack of sleep can be a dangerous thing in many ways and without clarity of mind much can be lost. So these last few weeks I've tried to dedicate time to reorganize my thoughts, my days and rest; so that I can be the complete person I need to be as a Christian wife and mother.

Bottom lining it this... we have more hurdles to clear. Will she be alive at 4 months, 5, or the ringer month 6? If she isn't how will I cope? How we we cope as a family? This is a perfect example as to why it is important to focus on the day to day and not look too far into the distance. Who of you by worrying can add a single hour to his life?...Therefore do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of it's own. Matthew 6:27 and 34


  1. alyssa is really beautiful and she sounds like a tough little cookie!

  2. I love the blog and how did I miss it. She is so beautiful and looks so well. I am praying for you as you continue in this race, it has such pain, emotion but such blessings. Will visit again so very soon, and may I add Alyssa link to Annabel's sidebar?

  3. Love her picture..she is beautiful :)

  4. See those clenched fists? They'll tell you it's Trisomy fists, but think of them as boxer fists! This girl is a fighter alright, no doubt about it!