Wednesday, July 11, 2012

How does it feel to raise a special child?

 First I would LOVE to point out that Michael is playing in his food and in this house that is HUGE!!  He has gained a pound in one month!  And yesterday he ate a whole 6 oz jar of lasagna (3rd foods) and didn't gag ONCE!  WAHOOOOO MICHAEL!!!!
 So on to the question at hand.  If you would have asked me this question a few months ago I would have talked about ADHD, RAD, or dyslexia.  Those were the things I had knowledge of before.  Now our family has experienced almost 6 months of having Michael with us and our world has changed- FOR THE BETTER!!! 
 What is wrong with Michael?  NOTHING!!!!!  I hate that question!!!!!  Whew.....just had to get that off my chest!

This is the doctor's version of his diagnosis:  Michael was born a preemie, he contracted hiv from his birth mom (he was not kept on the meds and suffered a lot and got very very sick as a baby which they believe caused his brain damage), he has mild cebral palsey, and since he had very little interaction for over a year of his life he has sensory needs and has autistic tendencies, he also is globally behind other 2 year olds.  He may never progress past the age of 5.  He may have severe autism?  He has records that talk about his brain damage which seemed to be a pretty big deal.  Since he lacked the interaction his cebral palsey stiffened his joints and there was not good muscle development.  He makes bits of eye contact, but seconds and maybe a minute at a time, but has held contact for 10 minutes once!  That's all :).   
 Why would I say it like that?  Because look at who he is - REALLY!  I mean I know he has several strikes against him!  I know we have been told not to expect too much.  I know that others may never view him as "normal", but you know my theory- WHY BE NORMAL???  God doesn't call us to be normal.  He calls us to be devoted to HIM. 
 OK so back to how does it feel to raise a special child?  AWESOME!!!!  I seriously can't imagine my life without him.  I can't imagine if we would have not followed the call to bring him home.  This boy has walked into our lives and turned it upside down.  You see we don't view things like we used to.  We don't view him by what he can't do.....but by what he can do. 
 We don't think about things he may or may not do in his future, but all the dreams we have for him right now!  We PRAISE GOD for EVERYTHING!  It is an amazing feeling!!!!!  The more we get to know our "rockstar" Michael the more our hearts change.  We change our hearts to say.....isn't this the way we should treat every child.  Be excited about all of their accomplishments?  Not worrying about their future, but celebrating the here and now?  Not taking for granted ANYTHING? 
 You see parenting a special child like Michael is full of JOY!!!!  How can this face not melt you?  You see too many people think I couldn't do that.  I couldn't parent a child like Michael because he can't do what other kids can.  He doesn't fit the mold our world creates.  It scares me.  I don't want to be looked at strange.  I don't want to have others ask me all sorts of uncomfortable questions.  I don't know if I could love a child that doesn't "act normally".  I don't know if I could? 
 Yep, he is not like my other 8 kiddos.  Ummm....none of my babes are alike ;0 just so you know.  I think when we say we don't know if we could we are selling God short.  After all HE CREATED MICHAEL!  If he created Michael.....don't you think HE created us to love him? 
 There are days when I wonder what HE was thinking......but not because I feel that Michael is too much, but more so because I feel like I am inadequate.  You know.....I feel that same way about our other 8 children!!!  In fact there are days .....let's be honest....DAILY.....that I feel like I am not good enough to be any of my children's mother.  It's true!  I think we all doubt if we are honest - are we doing this parenting thing right?  Am I pointing them to God enough?  Am I yelling too much?  How in the world do I handle this new "phase" or "thing"?  Will they ever learn......????
 Oh, but the JOY in parenting a special child is soooo much better than anything I have experienced, in different ways.  When Michael learns a new skill it is like Christmas or Easter morning to me!!!!  SOMETHING HUGE!  Our whole family celebrates!  And his laughter, giggles, smiles, and cuddles ARE THE BEST! 
 It is true he can't talk to me...yet....and tell me what he is thinking.  He can't express himself like his "twin" sister can.   He can't walk yet, and he may never potty train.
  There are extra therapy appointments weekly, and doctors appointments, he still eats baby food, and getting him to drink from a sippy cup has proven to turn my hair different shades.  He has an attitude that is adorable- most of the time except when he spits out his food for the 100th time. 
 BUT.........GOD!  God has given me a love for him so very fierce I would protect him with my life!  I would run a marathon if someone told me it would help him even a little bit.  I learn from the therapists and work with him at home, I give him his meds faithfully, I take him to all of his medical appointments and listen carefully.  I SOOO WANT IT ALL FOR HIM!!!!!!
 You see there is something that is different about Michael.........it is something God planted there. 
 It has nothing to do with what the world calls "normal intelligence" it is sooo much better than that!  In fact it is like an unexplainable JOY that can not be duplicated. 
 How does it feel to raise a special child?  LIKE MAGIC, except I don't believe in magic.....I believe in GOD!  So what is the word I am looking for? 
 searching......my mind.......
Oh yea.......parenting a special child like Michael feels like- HEAVEN ON EARTH!!!!!

***I haven't forgotten about the drawing for the book.....sorry....will be happening soon.  Sick kiddos has not helped this week :).  Please pray for health.  The funny part- Michael hasn't gotten sick, but every other child has- YEA!  :)  So much for the theory that hiv babes get sick more- Not true!

10 comments:

  1. Been crazy here and I'm finally catching up on reading your blog (other then reading the titles on fb). Great posts recently and quite challenging to me...really struggling with my precious child's behavioral issues....drawing on God to keep loving, keep calm, duck the flying missiles, etc...What a great reminder to celebrate his baby steps and how far he's come! As well as the earlier post on "anything"....

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  2. Praise God for Michael! What a cutie-pie!!!! He is learning new things every single day....and, I cannot wait to see God shine through him as he grows older! Bless your heart Dawn! I pray every night for you and your family. We are kindred spirits. And when i think the world is not getting 'it'....and I am getting aggrevated, I usually turn to you or Kim Green's posts for comfort. Haha. You all get "it"....why doesn't everyone else? I do not understand this world we live in. I actually take comfort in that. It mean's I have my head where it needs to be! <3 ya!

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    1. Thank you for your prayers!!! You have no idea how amazing it is to know others pray for you!!! I love reading through blogs of friends who "get it" too. Keeps my head on straight when I feel like the world is spinning out of control!

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  3. Love you attitude : ) It looks like he's even made so much progress since I was there. We'll have to figure out how to hook a side car on a scooter for him : )

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  4. Amen my friend. Amen.
    It IS like Christmas. Every single accomplishment. Christmas.

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  5. ahhhhhhhh I LOVE THIS!!!!! Thank you!!!! So super encouraging and exactly what I needed tonight. ~Krista Dearey

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  6. Precious, just precious...as we travel the path were on and I feel so completely inadequate, this was so encouraging to read. Hugs bloggy friend!!!!

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  7. What a beautiful post! Thank you for sharing your heart.

    Blessings,
    Amy Patzer

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  8. I adored this post and OH MY WORD! That boys smiles!! Dawn he looks so happy these days. I am loving it! I understand so well when you say just live in the moment and see what they ARE doing. I get so wrapped up in fear. What ifs. And my kids challenges seem so minor in comparison to michaels. Physically and mentally they are less challenging. But emotionally and spiritually.. I sometimes feel like my fierce love and training isnt enough. And that I am just bailing water out of a sinking ship. But I know GOD has a plan! and whether I feel qualified as co captain of this ship or not-- we are NOT sinking and we WILL get to port. eventually. lol can I have a lifeboat for a few days though?? CAn we call it a cruise for just a week?? lol

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  9. I am a new follower to your blog, and it's the first I have commented. We had a foster baby with us for 9 months that had severe cerebral palsy...and I just totally agree with all you say here. The little guy we had with us could not speak, could not tell me what his needs were...he was fed only through a feeding tube, had so many therapies and appointments. Doctors say he probably wont crawl or walk, or maybe ever talk.
    But I tell you, that little guy DID communicate with us...in his own way! He would look us in the eye and give us the biggest fullest smile you could ever imagine!!! He would snuggle right into my chest and get nice and comfy and sleep on my for hours at a time (heaven!). He has the most beautiful spirit of any person I have ever known!
    He is back with his mom now, but we are blessed to have formed a really good relationship with her and we see them often!
    Your little guy looks so sweet too!!!! :)

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