Finding Courage Through Sharing

OK, so this month Michelle's theme is this: This month, write a post to share something that you wish other people understood about your life with a child or children facing medical challenges. If you haven't gone to In the Life of a Child to read the other posts yet, MAKE HASTE!!!! (as soon as you finish mine ;-)

As Michelle indicates in her post, this isn't an easy subject. I could write a book on it some days, but really, how do you tell people what you wish they knew about your life as a special needs parent?

There are a few biggies for me. The sum total of which is: let me take the lead.

What does that mean? To me it means that most of the time, I want to talk about my kids and their needs, I want you to ask questions, I want you to make comments, I want you to be interested, but pay attention, I may need you to stop if I start crying, which sometimes I do.

When the tears start and I begin looking foolish in public, please throw me a bone and mention the weather, the NBA playoffs, U of M's new coach, anything that will not provoke more tears. But short of me looking foolish in public, please talk to me about my kids. They are a huge portion of what makes me me. If you care about me, care enough to ask about them.

But whatever you do, don't make me out to be a hero. I have done only what God has planned for my life, no more, no less. I only answer to God, he gave me the ability to raise these kiddos, and many times I fall on my face, but it's God who gets me back up. It's upon Jesus that I lean when I'm weak, and the Holy Spirit that gives me anything I have in me to do my job well, just as he does all who ask. Doing what God requires of me and depending on Him to complete the job doesn't make me different or special, it makes me a Christian. I hope and pray that I receive a gleeful "Well done my good and faithful servant" upon the day of judgment, no more, no less.

Parenting for me requires a fair amount of work, I dare say more than average, but as with everyone else, I am just trying to make it through the day with my hair still attached, and on a good day, maybe even looking halfway decent.

My Child's Story

OK, I found this blog carnival at In The Life of a Child, and decided to join in. However, I have 3 kids with Spec Needs, So I will write a brief overview of each, rather than a comprehensive post on one.

Bert (aka Alex) was my second child, but he introduced me to the world of Special Needs. After an emergency C-section because somehow he no longer found my womb compatible with life, Bert came into this world gentle as a lamb. His first cry was when he was 3 weeks old, I'll never forget it. Beaner stepped on his hand while he was basking in a sunny spot in the living room. I was thrilled, he cried! Bert was born with a little bonus in the 21st chromosome. Most people associate this condition, called Down syndrome, with mental retardation and the obvious facial differences that those especially blessed kiddos carry. I, instead associate this with an incredible ability to live in, and enjoy the present moment, a delight in this world, and an especially large heart.

When Bert was <2, the Chief left to check on his sister, who was in heroin withdrawal, and came home with our Rockstar (Chels). She was 13-1/2, but the size of a rather small 10 year old. She had long, scraggly hair, was pale and drawn, with haunted eyes. At the time I had no idea that she would become my daughter, but through time and experiences, she is. Her mother passes away nearly 3 years ago, leaving me to parent an orphaned teenager. Rockstar has since been diagnosed with PTSD, bipolar, and RAD. There were times in parenting her that I had resigned myself to believe that she may never be a productive citizen, that if helping her find Jesus was all I did for her, that would be enough. I am thrilled to say that by the power of the Holy Spirit, she has found Jesus, and much more. She is living abudantly, and though she doesn't always make great choices, she is learning and growing, and has blessed our family beyond measure.

The last child to enter our family is Schmoozer (Ben). In early 2006 we submitted our information to Robin Steele of the Adoption Awareness program, hoping to adopt a second child with Down syndrome. Within 3 weeks we got a call, matching us to Schmoozer's natural parents. After waiting 3-1/2 months for research and decisions to be made, and for paperwork to clear, we brought Schmoozer home from the District of Columbia. Within days, we realized 2 things: 1. that he didn't poop right at all and 2. that he didn't hear right at all. As time has gone by, we found that not only does Schmoozer have DS, but is also moderately to moderately severely hearing impaired, he has Hirschsprung's disease, he has hypothyroidism, and to top it off, he has Cyclical Vomitting Syndrome. Talk about getting more than you bargained for! Schmoozer has filled, not only our hands, but also our hearts, to capacity. Through 8 hospital admissions and more tests and proceedures that I care to remember, his delightful presence has blessed us by his will to live, his spirit, and his ability to learn, despite all the odds against him.

It has been a delight and pleasure to parent these amazing kids. I have learned so much about myself, my priorities, about my Lord and Savior, and about living in the moment from these kids. Though they have brought with them struggles beyond measure, they have blessed us far more abundantly than that!

May I add, last but not least, my Beaner (Hannah). She was my first child, but now she's not my oldest. She is totally typical, bright, precocious, gentle and sweet. She never asked for such a house full of crazy sibs, but she wouldn't change them. She is, by virtue of being the only typical child in a house of 4 kids, also a child with special needs. Of all of my amazing kids, she amazes me the most. What a blessing she is!