The Daniel Touch

Daniel does this thing, where you go up to him in his wheelchair or his bed...and he looks at you so intently and then reaches with his left hand, extending a finger and touches your face.  It almost reminds me of a blind person, feeling someone face for a perception mentally of what they look like.   Daniel's world is limited, so via vision and touch he needs to be connected.

Sometimes, like just now, he will grab hold of my hand with both of his hands and hold on tight.  That is a really cool feeling.  I love that.

If you have ever known someone who can not speak, or see, or walk, or hear, etc...  you are given an amazing opportunity to see God work miracles that bypass what we are all blessed with...   For example, He gives my son the ability to touch and feel, to laugh and see, to express pain, joy, and sometimes even fear.  Those are his tools...  that God has given him...and the gift is really being able to watch him collect and absorb the world in a different way than everyone else.  Its really beautiful, really simple, and really a miracle.

Maybe people who have normal healthy children would read this, and a funny quizzical look would come across their face. "I'm glad that's not me, whew"    Well, my children are perfect, and I am totally blessed by God to NOT have a special needs child to cope with.   Who knows.   But...  if you are like me...the most annoying phrase I hear frequently is "God only gives you what you can handle"....  that puts me in a different "category" than the rest of the mothers???     They can say that phrase, look from a distance, and relax in the fact that a larger amount of the stress of life was given to Julie..because gosh, she must be strong and I must be a weaker person because I have been given less problems.

Well...   I certainly can see how easy it is for people to raise me on a pedestal like I am a hero or something. But that doesn't make it any easier.  I have tremendous pain, and pressure, and fear...  I don't WANT to have to handle this...but I have to do, what is necessary.

Yes... God gave me a miracle that is Daniel.  But along with a medically fragile child comes the long list: doctors, medicines, seizures, choking, respiratory frailty, pulmonary oxygen levels, changing diapers and more diapers, tons of laundry, transportation, education, integration, advocacy, financial hardship, and I could probably write an entire blog on what comes along with a special needs child.    So WOW...I should feel like a SUPER person because I have been given what I can handle?   Honest to God..who can possibly handle all of this.  I'm just trying to survive.   So I can really take moments to enjoy the beauty that is my child.

I don't want a million dollars, or a luxury car, or trips to the SPA,or designer handbags, or a luxury home...  All I wish for is blessings of security, peace from financial pressure, God's presence in my life, Sarah and Thomas to be able to go to college, food in my fridge, cars that don't have engine lights one...  just a basic life....   Because, that would relieve the tension in the cables that bind me, and keep me from truly doing the best that I can to help Daniel.  More therapies are out there that he could have, he could swim more, and do more...  But I simply can't get to everything...  Newsflash...Julie can not handle all that God has given her.  I just try to keep my perspective.

Yesterday...  I posted on Facebook my need for bible reference to help me deal with my issues.  I have some amazing Christian female friends, mostly all Mom's who shared with me their favorites...and I was so touched to see that God uses us to remember Him and stay connected spiritually.

Here they are....  ready??

• Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
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• And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil. 4:6,7)
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•  i find that praising Him (psalm 150:1-2, Isaiah 49:13) and focusing on His Truths and promises (Jeremiah 29:11, 1Cor 2:9, Matt 28:20, Phil 1:6, Is 26:3-4, Romans 8:28, Heb 13:5-6) divert my anxious heart. also lamentations 3:22, joshua 1:9 (a fav in our house!), 2thess 3:16, Matt 11:28, John 14:27, hebrews 10:23-24, Phil 4:8, nahum 1:7.....and a huge FAV (joel's benediction that always makes me cry) Numbers 6:24-26! be encouraged, sister!!!
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• Isaiah 40:31
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• add one more VERY important one!!! this is the one i was looking for and i know it brought a VERY dear friend of mine much comfort through great difficulty: Zephaniah 3:17: The Lord your God is with you, He is mighty to save. He will take great delight in you. He will quiet you with His love , He will rejoice over you with singing. AMEN!!!
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• Jeremiah 29:11 For I know the plans I have for you, plans for your welfare and not calamity to give you a future and a hope!
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• Hebrews 13:6, "We can confidently say, 'The Lord is my helper, I will not be afraid; what can man do to me?'" Prayers!
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• Praying for you Julie! Philippians 4:4-8 "Rejoice in the Lord always! I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything but in everything by prayer and petion, with thanksgiving, present your requests to God. And the peace of God, which transends all understanding, will guard your hearts and minds in Christ Jesus. Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things."
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• Google serenity prayer, the long version is very helpful to me.
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• Julie, remember to breath. Just close your eyes and breath. I believe you know everything you need to know. People care about you and your family and you are surrounded with love. What you need will come from within.
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A very wise person told me once to lay my requests out to God, and have faith that we will receive.  To be calm...   and all of these comments above taken from facebook yesterday, all speak to that truth.  I found peace while going through my bible and marking each one, and reading each one.

And today, when I went into Daniel's room, he instantly reached out to touch me, with very intent eyes looking right into my eyes.  And without fear, stress, anxiety, negativity, etc.  I was able to receive his message loud and clear.  And I was able to return it.

All children are blessings...  but compromised, disabled children need us to help them display their gifts and give their talents to us.

"The Daniel Touch"....   is just one of those things.  

Football 2011

Watching the Game with Dad

This year my youngest, Thomas started playing football.  He is a big boy and we knew that it would be good for him.  He pushed himself diligently through all the conditioning.  He was and still is the last one running the laps.  But he never complains.  He is such a great kid.  But when I took Daniel to the first day of training, I didn't expect one of those "sad Moments" to hit me.  I thought I was past that.  Watching the boys...playing and running and catching...  Laughing and making friends.  I looked at Daniel in his wheelchair, quietly looking above the boys on the field at the trees and the clouds..   And tears began to stream down my face.  I felt alone.  I felt different.  I longed for a peak of what it would look like to see Daniel run and laugh.  I longed to hear what his voice would sound like.   And I left.  The next day, Thomas said to me...  Mom... don't go, you know everyone is going to stare at Daniel and you are going to feel sad again.   But I went.  Because it wasn't about me or Daniel...it was about Thomas.     And as the time went by, the families began introducing themselves to us...and Daniel began to be a very welcome spectator.  Some of the Mom's even pitched in and bought him his own "Nighthawks" training jersey.

Its a very hard thing....you see....  To be moving two normal children along a path of growth that is "normal" and progressive into their future.  And at the same time have a young man with you, who is also getting older, but who has no capacity to ever be independent.   Does it break your heart?  Hell yes.   But I tell myself every single day...shake it off...  they all need you.  Daniel is who...he...is.  He has a unique life and you can not "what if" yourself to death.

And I succumbed to hollering and cheering for the team with the rest of the families.  And Daniel continues to watch things in the sky.

Football...  Thomas?  Who knew?     Oh man...writing this post just made me cry.   Dear God please help me provide for this family.