Thursday, January 28, 2010

This Video is Wonderful

Here is the story and a small piece of the song.
Not the best theology, but a beautiful song. Thanks to for writing out the lyrics.

Thursday, January 21, 2010

Hospital Soap

I wish that my blog was "scratch-n-sniff", I would link you to the smell of hospital soap. As I was leaving Ella's therapy today I realized something, all hospital soap smells the same...and it all takes me back to the NICU. Yep, 32 months later I can still conjure up the feeling of the NICU by smelling soap. I'm pretty sure that there is no way to add up the number of hours that we have spent in a hospital/doctors office/therapy location over the past 3+ years, but all of those places have one thing in common, a smell that puts them all in the same memory bank in my head. I wonder if the freshness of the hospital will ever fade, like the memories of my grandparents who have been gone for almost 16 years now, or if the memory will never fade because we will constantly be in the middle of the medical world. Today, it's fresh and smells like soap.

Tuesday, January 12, 2010

Blog Music

Okay, so I've been asked by a couple of people about a song playing on my blog. I thought I had taken off all of my music because it seems to drive Chris Hill nuts...but alas, went ahead and added music (which doesn't fit) to one of my slide shows. I can't take it off, sorry Chris.

For those of you who have asked about the song it's "Beautifully" by Jay Brannan.

Monday, January 11, 2010

I love writings like these...

Thank you Jennifer for posting this:
I Am The Child
I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire , or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, repsonses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself; I do not give you understanding as you know it.
What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make your more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher, if you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Thursday, January 07, 2010

Faith and Trust for #3

Ella 1 Day Old

Will 1 Day Old
I have a lot of great, wonderful and heartbreaking blogs that I follow...and a lot of them have children just like our Ella. One of the blogs that I read is about a little boy named Max. Ellen is Max's mom and she posed a question today "Where you scared of going for kid no 2?" As I read through the post and then the comments I realized that I was scared about having William, but knowing that Ella's condition was such a fluke and so rare, I think I really let go of the fear and allowed God to do what HE felt was right for us and for His glory. I have to admit, I think getting pregnant with Will I was still in a fog and not really sure what the heck I was doing...again. I remember thinking that I didn't know how I was going to do every day with both kids, and I'm still not sure. I do know that finding Kristie when we did was a huge blessing and in more ways than I could have imagined.
Well, if thinking about having two kids was scary, then why in the WORLD would we think that we could handle THREE kids?!? I don't know. Honestly, I'm not sure I was ready to tackle the question of the next one. I was just figuring out our system with two. Will is at the point where he can communicate and walk and feed himself...things I'd never experianced thus far with a child...and now we are adding an infant into the mix.
One reason we announced so early was to ask for prayer. I need prayer as we look for a new attendant to help us everyday (as Kristie has decided to move on to a different job). I need prayer for my fears of anything happening again. Honestly, the amount of special needs blogs helps, because I don't feel along and hurts, because I see how much is possible out there.
So, how do I combat the fears? Prayer and faith and trust. I pray, and hear my husband pray, daily over fears. All of the "what if's" and "how do we" can keep me from moving forward any day. I have faith that my God is bigger than any of these fears. I believe that my God is good and faithful and loves me and my daughter very much. Although it's hard to know why Ella is handicapped, I know that no answer this side of heaven would be good enough to know why. I trust Him. I'm reminded of the question that Joe and I have been asked by God every day, but more loudly since Ella was born "Do you trust me?" and some days "Do you REALLY trust me?" I want to trust Him. I want to put all of my trust in Him. Some days I do really good at this...and some days I struggle and pray for more faith.
When I look at the babies above I get excited that they will get another sibling. Ella will have someone else who pushes her and Will will get an actual playmate. I also never wanted to put all of the pressure of Ella's long-term care on he will have someone to share that responcibility with when we are gone.
I ask for prayers and wisdom. Three children is difficult for ANYONE, but when you add in a child who is 32 lbs and doesn't walk or talk or feed herself or a long list of other things, it's IS scary.
*This post seems all over the place as I read it back to myself. I've stopped a few times while writing it as I'm sitting in the waiting room where Ella has therapy. I've had one PT come out and tell me what all we need to do and who all we need to contact to her her new feeding system ordered and approved. Her other PT came out to tell me how she did today and how she just doesn't process her right side very well, and what we can do at home to help her. I'm waiting on Speech and OT to come and give me their opinions of today...and I pray that she did well for them. I then got distracted by an older boy, maybe even 18, laying in a wheelchair and looking at a board with his eyes to tell him mom what he wanted because he couldn't speak. Fears...I have so many. I want her to walk, I want her to talk, I want her to be functioning as a 3 year old. But I want God to be glorified, and I want to desire what HE has planned for all of us, all 5 of us.

Monday, January 04, 2010

Day 4...Jamaica

On Wednesday we had our first day at a port. Pulling into Jamaica was beautiful. It's a very green country. We started out by heading to Dunn's River Falls (the 2nd picture, off the web, not from my camera) and we climbed all the way to the's a great climb and with the rushing water it's a lot of fun. We got one professional picture, but none with the camera because I would have dropped it in the water for sure. We then went down the road of Ocho Rios to Mystic Mountain and took a "ski lift" to the top of the mountain...I was wet and cold, but it was beautiful, it went 700 ft above Jamaica and you could see coast and tree tops...amazing to see what God has made in other places in the world. Notice Joe standing and reading historical information...the man loves to stop and read this stuff, ALL of it. Again, no idea what our towel animal was, a little disappointed. That night we did karaoke on the boat...SO much fun. Eric Couch tried out to be Garth Brooks in a talent show (watch for Saturdays pictures) and Joe even sang a few times, somehow I missed the pictures of Joe singing, but someone has it and I'll link to it soon. The lady running the karaoke night enjoyed Joe so much that she had him wrap up the night, yep, it was that bad. The video at the bottom makes me smile. I'll leave it up until Stephanie notices that I have it on here and asks me to take it off the Internet, till then, enjoy. Catherine Couch is singing to Steph's moves.

Day 3...getting warmer

It was chilly the first few days on the top deck...lots of wind, but we got some sun before the big warm start started setting. We sat here the WHOLE day...perfection!

And there were a LOT of games of CatchPhrase late at night:

Day 2

Cruising...Day 1

You might start out by asking WHY and HOW we went on a 7-Day, all expenses paid, Caribbean cruise with 12 couples that we adore and have known anywhere from 6 months to 5 years. Let me tell you:

In December of 2008 our Sunday School teachers, Reed and Marian, gave us a challenge. Not only to memorize scripture, but to learn it and to hide God's word so deeply in our hearts that it would be there at all times for us to lean on. To qualify for the the cruise each husband and wife would have to recite 11 pre-determined scripture verses, these were only our "Qualifying Verses" and would lay the ground work for those who wanted to take part in the challenge. Then for each "battery" of verses that we recited beyond the QV we could earn $500 per person. There were 5 Batteries of Verses and 3 Bonus Batteries for extra spending money. Most couples memorized all 5 batteries and the bonus their ENTIRE trip was paid for and they got all of the extra spending money...what an amazing incentive, but not really the reward. There were a total of 164 verses and all the books of the bible, Joe and I got through 3 of the batteries (87 verses) but we plan on finishing, even if the monetary reward is done. It has been a life changing experience for us. I watched as the verses I was committing to my heart were revealed as truth in my life at the time. The last time Ella had her seizure we were starting to memorize Battery 3 and here are some of the verses that I clung to (and still do):

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing. James 1:2-4

And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us. Romans 5:3-5

Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing; so that also at the revelation of His glory, you may rejoice with exultation. If you are reviled for the name of Christ, you are blessed, because the Spirit of glory and of God rests upon you. 1 Peter 4:12-14

No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, that you may be able to endure it. 1 Corinthians 10:13

For though we walk in the flesh, we do not war according to the flesh, for the weapons of our warfare are not of the flesh, but divinely powerful for the destruction of fortresses. We are destroying speculations and every lofty thing raised up against the knowledge of God, and we are taking every thought captive to the obedience of Christ. 2 Corinthians 10:3-5

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ may dwell in me. 2 Corinthians 12:9

Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’ Isaiah 41:10

“When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you. “For I am the Lord your God, The Holy One of Israel, your Savior; Isaiah 43:2-3a

“These things I have spoken to you, that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.” John 16:33

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. For whom He foreknew, He also predestined to become conformed to the image of His Son, that He might be the first-born among many brethren; and whom He predestined, these He also called; and whom He called, these He also justified; and whom He justified, these He also glorified. Romans 8:28-30

Now to Him who is able to keep you from stumbling, and to make you stand in the presence of His glory blameless with great joy, to the only God our Savior, through Jesus Christ our Lord, be glory, majesty, dominion and authority, before all time and now and forever. Amen. Jude 24-25

A lot of the verses I pray directly over Ella...because these are promises that He will keep, even if we see them fulfilled on the other side in Heaven. I have no doubt that God loves me and love Ella and has our lives designed for a reason...these verses help me so much when I doubt who He is or why I believe that He is good. These are just an example of the scripture that all 12 couples learned and committed to memory and their here is the start of the pictures of a small reward for our hard work: