Alyssa had a good day. The following is just the emptying of my mind with a humble heart. Please know I don't claim to know it all but as you'll see I'm willing to share what I know.. walking my son to his bus stop this morning a wisp of crisp cool air moved across my face, it tickled my neck lightly flowed downwards against my spine causing me to shiver. Then almost in unison my son and I said "..it's getting cold" and instantly I thought but it's July! I literally stopped in my tracks thinking to myself no no no NO it's a not July it's a it's a November? My minds voice rising an octave because I wasn't quiet sure,then confirmed my question by I scanning the near naked trees, yeah falls here it is November. Remember we did the candy treasure hunt a few weeks back, and the harvest party at school it is fall. My thoughts wandered on about fall for what seemed like minutes but was actually only a few seconds, I know because I easily fell back in step with my son who had begun moving more quickly in hopes that it would be warmer closer to his stop. Or maybe he was hoping the bus would come more quickly if he looked like he was ready to board. Whichever all I knew was that it is possible to live life in such a manner that it stands still and moves at hyper speed all at once. I know this because I live it everyday.
My husband had taken a few days off from work prior to Alyssa's birth. We planned on painting our hallway, the trim in the surrounding areas, in addition to sanding, panting and placing new handles in the doors. He removed 3 doors and got started. He was first side tracked by a great summer day tha we decided to a family thing figuring he'd make up the slack when I was in the hospital. So we had our bathroom door unhinged between workhorses on our porch for what we thought would be a day. I was going to be induced so we thought we had a general idea of how things would progress. We were wrong the bathroom door was rehung a week after Alyssa's birth with out door handles, just like the linen closet and a few other key doors; the painting remains too. It's as though it all stopped, but we are living through this at the same time. I know I'm not making sense I guess like many things door handles in the grand scheme of things really aren't that important in life.
Before my conversion reading the bible was like reading Greek. Now it's like a cool drink of water when I have a dry throat. Not that I understand all of it or the fullness of every verse but it brings comfort and peace. And yes I do have a better understanding of the words contained within. It is like being given a key and I am now able to open doors that before I could not. I've picked up the bible many of times during my unsaved days and but put it down again because it just didn't make sense~ it didn't speak to me. Today I better understand why many call the Bible the living word,(other than the fact that God is ever present, that Jesus lives) because it speaks to my pain, fear, or joy, my confusion, to me. If you have yet to experience this I know to you this may sound crazy but I hope that one day you'll come to understand my desperate attempt to explain what it is like to feel your spirit /soul renewed.
I went to church as a kid and liked it very much. By 7 or 8 had the books of the bible memorized and even earlier knew John 3:16 by heart (..for God so loved the world he sent his only begotten son..) but I missed out on having sound biblical teaching. I understand now how beneficial it would have been growing up. Even though I liked church by 14 I liked other things much more...Knowing God's word (knowing the bible) is a significant piece of the Christian walk. I turn to my bible for direction, and understanding. If I had, had better training as a younger person..well all I can say is knowing your bible is important and I'm still putting this statement to use..constantly learning verses for the 1st time as a result of this trial.
I am fortunate that the Lord knew my needs and saw fit to lead me to a church that not only practices sound biblical principals, but is focused on providing sound biblical teaching to all who come through the Lord's door~ not just adults and not just to those who are saved but to all. I came to worship there after a period of years that I thumbed my nose to the idea of worshiping the Lord in a church. I was "spiritual" and created my own ideas of how God wanted me to worship him~ I thought I knew better of what he wanted me to be or do~ I give thanks today that HE knew and provided a means for me to be saved.
I'm sharing this because today was an odd day. A day in which I took a look at my personal inventory. Some things I liked and was proud of and other things not so much. I think I was just trying to understand what am I doing here, really why I am here in this place in my life with this family these children..and what am I suppose to be doing for HIM (not so long ago I would have said doing for me) yes the Lord what does He want me to do? My life is about him or at least it should be. I wish I could say I always act in a manner that showed that I know this but bare bones it's true.
Whew Alyssa had physical therapy today and she enjoyed it so much. She smiled and cooed, stuck her tongue out with delight. Awesome. This from a girl who wasn't suppose to live but a few days, a girl who wasn't suppose to be able to recognize her parents..I am thankful for the Lord's wise placement of families/people in our family's' life that are experiencing similar trials. Some of whom are right in our own church and are shining examples of how to persevere, how to rely upon the Lord, and show that it is possible to get through the "I'm dying here" days. I am thankful for caring friends and family that have been constantly present following this blog and/or sharing their support~encouragement.
I know I've gone on for way too long and I'm all over the map today I'm asking for prayers to be said on behalf of our family and for the following while I may not always list a name as we know that Lord knows and we can just lift them up and He will do the rest: for Brandon; for a boy with diabetes and his family particularly giving his mom courage and strength; for a mom/wife with breast cancer that her chosen treatment will work and that she will be a BC survivor; for a husband/wife being content in the Lord's timing in granting them children and that the practical measures being taken will result in a healthy pregnancy;for Hannah, Brianna, Anabel,Kayden, Jennifer,Allissa, Bethany; for those caring for elderly parents; for our expectant moms and new mom (dads);and you
Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! "Who has known the mind of the Lord?Or who has been his counselor?""Who has ever given to God, that God should repay him?"For from him and through him and to him are all things. To him be the glory forever! Amen. Romans 11:33-36
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Tuesday, November 18, 2008
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 (...you 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.
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 (...you 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.
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