Wednesday, November 12, 2008

Celebrating 4 months

It is reasonable to put forth that I am so daft that it took something as earth crumbling like our daughters diagnosis for me to fully acknowledge the living presence of the Lord and be readied for the growth He had in store for me. I can be daft and stubborn, something this big was beyond my concept for my life time..He knew. Something this big in one shot clearly showed me this is way beyond me and all I could do was turn to God and faithfully ask-seek-receive..He knew. My kids are my heart, he knew how to reach out to me. One hand was the pulling away of something (someone) I cherished yet the other hand was gently guiding me holding me...

Author Joan Webb wrote: "our heavenly father is actively involved in our growth; he encourages us according to our capabilities and understanding at the time. He does not push us; he waits until we are ready. If God told us everything about ourselves and life all at once, we would be confused and crushed. Instead he teaches us based on our spiritual and emotional age level.." Can I hear an AMEN on that~ it is so true.

As I've said before and will say again I am coming to Christ a worn sinner; been there/done that and he accepts me and loves me molds me and grows me. (Sorry Ed,kids, mom..) I've never experienced or will experience another love like this.

Joan began a prayer by saying Lord you are a compassionate and caring father. Thank you for nurturing my development step by step and giving me understanding just as I need it. Help me to be as patient as you are with my simple and in prefect attempts at gaining maturity.. I'll add: Thank your for these wonderfully beautiful 120 with our daughter and showing us the hearts of friends and family alike today as I cry with tears of joy and grief thank you. You have placed wise people in my life to help guide and direct me (our family) in this journey thank you. Thank you for charity, and organizations like Now I lay Me Down to Sleep, Songs of Love, Prenatal Partners and more; support organizations like Trisomy 18 Foundation and SOFT; thank you for my church and the ability to worship freely, for the brethren within, for our Pastor(s) and their wives, the deacons and Sunday school teachers and others; for the Aunts, cousins, sibling and loved ones who've been a support, for other moms (and Dads) who are dealing with T18 and other long term illnesses who've reached out to us in kindess and thank you for this day. Thank you for our daughter. Amen

I try to balance or edit my thoughts here. I can ramble and not all venting is good, I want to paint a positive light even with this bleak news. I want to share our struggle but also share the hope that we do have. Not all my aaah-haa moments that are shared here come from my own brain. Those I trust offer good advice and listening ears ( may be sleep deprived and you may benefit from more rest...or have you read..and have you tried..) that has enabled me to better use this outlet. It is by God's grace that Ed and I are on this journey and living it with such love, support and encouragement. Our kids have been given grace and strength too. Even as we are unaware of what each day holds we are gifted with joy, and healing. Thanks for reading and joyfully celebrating 120 days!

Be sure to turn down the volume on the player at the bottom of page before clicking the video belowSongs of Love created and Kimberly McManus sang Alyssa’s song. Pictures were compiled from home shots, Bill Tilton Photography of Delaware (affiliated with Now I Lay Me Down to Sleep) and Ms. C.G were appreciate your generous efforts.


  1. I read in awe at the beautiful way your words flow. I have been reading for awhile and finally thought that I should comment. Your daughter is beautiful and I hope that you are led on a path to providers that see her as a beautiful breathing baby and not a limiting diagnosis! She has already broke through that diagnosis!!! She is here!!

    Praying for your family for countless days with your princess.

  2. I am always in awe after I leave here..your daughter is such a fighter..god bless your family!!!