the other evening after tucking the boys into bed, steve came downstairs and said, ‘i just had the most surreal experience. i was telling david to lay down and kissing him good-night and as i looked at him i saw a nine year old boy–no disability. just david. it was like our souls had a connection.’
as soon as he described the interaction the tears began to roll down my cheeks. i knew exactly what he meant–there are times, moments, i see beyond david’s disability and into his soul. and i see a little boy stuck in a body that won’t cooperate with him. i see him wanting to speak words and unable to get them out. i see him wanting to tell me something, to ask for something or describe something but there is a chasm between us and it’s too wide to cross.
i’m blogging over at {in}courage today. hop over and read the rest of the post here…
Hi Lisa! I just stumbled across your blog. This post really hit home with me. I have a little girl (2 yrs. old) who has a very rare chromosomal abnormality…she has severe developmental delays and will likely never talk. She is healthy though, which I thank GOD. She also has a twin sister who does not have the genetic disorder. I see her “what if” everyday…and you know what…it makes me love her even more. It’s impossible to not think about those “what ifs”. And there are times I have the same experience, I look into her eyes…we connect and see her light, her love, her soul. She is a blessing…just as David. xoxo
WOW! That is only God.
Hi, Lisa – I think that God let’s you see the “What If’s” so you can know all of David – what’s inside his soul as well as “What Is” so you know him inside and out and also so you will know in your heart the “What Will Be” of his soul. You are both wonderful parents and what a lot of people don’t understand is the unbridled love David brings you everyday.
XO – Linda
Hi Lisa, thanks for sharing your journey with us! Living in the “What Is” can be hard at times because the “What If”s are sometimes so big…my son has cerebral palsy and each day is challenging. I read something the other day about when we get to heaven, we will be like Him. No disability. No pain, sorrow. Only joy, love, peace, happiness. What a great comfort to know that while it may seem like a long journey, there is light at the end of our tunnel in that some day, We shall all be like HIM!
Blessings to you and your sweet ones today and throughout the holiday season!
Emily
I love the Psalm that Marie-Eve wrote. Working with adults with disabilities I see this daily. It is part of my job to help integrate them into their world with minimal assistance. Teaching and encouraging them to use skills to interact with others or get a task completed. Of course, this means varying it to their ability and creating success. The times I most see it is with others in the community, treating them differently, making an unnecessary scene. I don’t like to speak on their behalf, and often I have to bite my tongue. You can see the frustration, the hurt. Like you said, its like somebody is trapped inside the body that holds them back from doing certain things. My prayer is that our world begins to lift them up, rejoice in their differences and make it an easier place for them to live.
Beautiful!
”13 For you created my inmost being;
you knit me together in my mother’s womb.
14 and I praise you because of the wonderful way you created me.
Everything you do is marvelous!
Of this I have no doubt.
15 When my bones were being formed, carefully
put together in my mother’s womb,
when I was growing there in secret,16 Your eyes saw me.
Every day of my life was recorded in your
book before one of them had taken place.
17 How precious are your thoughts concerning me…”
Psalm 139
xo-
so beautiful and touching. I love when you share your story. You bring so much encouragement to so many people, including me! xoxo, ashley
I have a son who lives in a body that doesn’t work like it should and that doesn’t allow him to express himself also. I always believe that God stood with him before he was born, and let our son choose us as his parents.
I understand your posts about David, mostly they make me cry, because I live in that house with the doors locked so he doesn’t escape. I live an entirely different way from how I raised my first two children. I don’t know if there are ever any easy days, but we just continue to get up everyday and do the best we can. Hoping it will be enough in the end.
May you be blessed with family and friends who stand and understand.
beautiful. david is so loved & is so lucky to have you & Steve as his parents…God hand-picked you guys for sure 🙂
This was such a beautiful post Lisa, and David is such a beautiful little boy. Thanks for sharing!
I’m sitting in a hotel room while my daughter spends her 5’th night in the pediatric intensive care unit. She has severe cerebral palsy and many other medical problems so I know all about the ‘what if’s’. Your post was beautiful, timely and God-inspired. Thank you for always speaking so openly about David and the struggles and joys of raising a special-needs child~you’ve been such an inspiration to me.~Heather
I read your post and left a comment over at (in)courage!
P.S. That is a beautiful photo of you and David!
absolutely beautiful. thank you for sharing. David is perfect in HIS eyes, HE made him the way he is supposed to be. sending LOVE on this beautiful day.
~Michelle B.
This is a beautiful post, Lisa. I actually watched a young lady that has CDLS, I was a nursing student so for one of my papers I wrote it on it. It’s amazing how kids with CDLS are so lovely and vibrant and in a broken body. I’m not sure if anything will take their spirit away. Thinking of you and your family today.
This was beautiful, Lisa. Thank you.
this made my day — i too struggle with WHAT IFs (different situation) and I needed a new perspective – lately its been hard – so thank you Lisa for helping me SEE in a new way!
xoxoTiffany
I have those moments with my mom a lot (Alzheimer’s), especially since I had my little girl.
I guess you just let that go and be in the moment. Not my best thing but I’m trying.
Lisa;
what if we could all see ALL of us the way that we are meant to be? That is my hope in Christ! Thanks for sharing your wonderful David with us 😉
Parents always want the best for their kids. We want to raise them above their limitations and any help we can provide, we do. I can’t imagine the yearning to help David get out those words he desperately wants to share with you. But I can appreciate Steve’s comment of seeing David beyond his disability.
My mom has been confined to a wheelchair for over 30 years, now. I never see her as a disabled person, I see her as my mom. The wheelchair was never her defining character and seeing what she gives to the world is her beauty.
beautiful post.
Tender mercies of the Lord. It is wonderful to “see” things as they really are, which contray to worldly opinion, is not bad but wonderful.
I am sure Heavenly Father wants you to know that you are a good mom, that you “chose” in your heart at one time, to give birth to David and to love him and cherish him for all time. David chose you, and he is perfect, every whit.
God bless you Lisa
This made my eyes well up too Lisa. I think God sometimes must send those special little spirits to parents who will be good to them. It is wonderful that he is a blessing in your life, and he is lucky to have you and your husband as his parents! xo
Your son is so beautiful; it is hard to have him stuck in a body that is broken; love to you and prayers, a candle lit just for him in prayer today.
Whoa…This kills me. I know exactly what you’re talking about! Beautiful moment. Thanks for sharing. 🙂
Lisa-
David is PERFECT! That is what IS! He is perfect in the eyes of our Lord that created him ESPECIALLY for you. He is perfect to his mother and father that were PERFECTLY chosen for him. He is perfect for a brother that the LORD chose PERFECTLY for David! He is perfect for the readers of your blog because everyday he teaches us a lesson through you and brings us closer to God!
“What if” instead of looking at our children as having disabilities we looked at them as being UNIQUE, EXTRORDINARY, ONE OF A KIND! That is what we all try to strive for anyway, right… to not be the same as everyone else?
I know how powerful “what if” can be when we let our minds and hearts wander… I have those moments too…but then I remember that God’s plan is PERFECT and like you said… “what if” doesn’t exist!
You have been Blessed! And we, as your (stalkers) readers have been BLESSED that you share your life with us! Thank you!
I read your beautiful post and it was so wonderful and sweet on a day like today. Thank you.
Lisa I am sure there are alot of “what if” moments in your life w/David. But it’s those moments that you see his soul that I am sure are very wonderful. I would imagine as his mother(and of course Steve) you wish there was more you could do for him to help him communicate better or his body cooperate more. But I think just being his wonderful loving parents are more than enough. 🙂
He is such an adorable boy and I can see brings you much joy!
Cherish the ” soul moments” w/David!