Sunday, November 29, 2009

Grace

Today at church during the children's sermon Gale, one of our co-pastors, said something that will forever be a part of how I think about Christmas. It defines so well our belief about this very special time to celebrate:

"I think of Christmas not so much as what I am going to get, but that I am going to get what I need."

You know... Christ. Grace. "God's Riches At Christ's Expense." Unmerited favor. Grace.

So, about Grace. Receiving grace is not natural to who we are. At least, it doesn't feel like it to me. I was having a conversation with a dear person in my life recently about some tough issues, and I have to say I think Grace is what she is learning.

Grace is hard to receive when you are working so hard to get it. But that is what we tend to do, isn't it? Indeed, we even try to earn love, to earn grace from our parents, our employers, our friends. If we strive, then surely we will be okay. Right? At some point we will start to feel okay with ourselves if we see that we are admired on enough people's faces.

I have a dear friend who talks about the importance of knowing that we can "Just Be" and that is enough. And you know, that is the thing with Grace. You can't strive to achieve it. You can only ask for it, and you know what? It's yours. He is waiting to give it to you. You can "Just Be." It's Okay.

And you know, I think that is one thing I learn from my boys. At their age they ask for Grace all the time. They don't worry about earning my love. They know it is there. They only need to come to me with that tear in their eye, or arms stretched open wide. I am there, just waiting to give a hug.

My friend is at the beginning of a journey to Grace. I know she has received the Grace of God, yet I see her hold on to the stance of striving. Striving for the approval of so many in her life, God included, and you know what? It is exhausting. I know. I've been there.

I'll close with a wish. A wish that we can all remember Who we are celebrating this season, and Why. That Christ is born, the One sent to save each of us from what we cannot save ourselves. The One who came to give Grace freely to each of us, just as we are. That we can "Just Be" and still be loved. Still have infinite value and purpose. That we can cease doing what we feel compelled to do, and start healing so we may do what we were created to do. This is my wish for you, friend. It is just the beginning of the road for you, if you choose. You are bathed in the prayers of the saints.

Monday, November 23, 2009

Ratting Him Out

This is another Calvin story.

If there is one thing Calvin dislikes it is having his "work" (whatever that may be at the moment) disrupted by a--gasp!--Diaper Change!

Lately when we come into the room with diapers in hand and announce that diapers will be changed in 2 minutes (our standard amount of "heads-up" time in this house), Calvin will start pointing at Charlie and saying, "Bother! Brother Turn! Brother Turn.... Share! Brother!"

Thursday, November 19, 2009

Potty Talk

So the other day Calvin and I were doing a little shopping at Target. Halfway through our trip we made a pit stop to the ladies restroom.

Well, as Calvin stood in the stall with me he started to say (with ferver) what he always says when he sees a potty, "Poop! Poop! Poop! Poop!"

Now, Calvin seems to think that the more times he says a word the more likely the person he is speaking to will understand his train of thought. I must not have been catching on because he kept repeating over and over, "Poop! Poop!"

Embarrassed by my toddler and a restroom with every stall occupied I could only say, "Yes, Calvin, you are thinking of when you poop on your potty."

Of course when we flushed the toilet he waved at the swirling water and offered a, "Bye Bye!" Awe Calvin, he makes my life so rich... and so comical!

Monday, November 16, 2009

Check-Ups and Check-Ins

Last week was time to Check-In with the boys teachers at the Children's Center. That's right, parent-teacher conference time.

Calvin's conference was a little weird for me because it seems so unnecessary to have a meeting to discuss his development. Truly, I do care about how he is doing, where in his development he is, and how I can adapt too support him where he is at. For Calvin, milestones and development is all about providing a safe environment in which to explore, and letting him take it from there. His personality is one of movement. I have often described him as industrious. He is curious and bright. He is learning so much right before my eyes. He is learning things I just did not know was possible for a 20 months old boy to learn. He is teaching me.

On to his conference: I love his teacher, and I love that he is able to attend the center. It is a blessing to his outgoing little soul to have some social time with a bunch of his little peers, and a chance to play somewhere with a lot of very neat activities going on. He is doing great, and feels very comfortable to be there. He knows the routine, and is becoming increasingly independent in his part in it. When we arrive he knows it is time to wash hands. I turn on the faucet for him and provide the squirt of soap (at his command, LOL), and he takes it from there. He puts his coat in his cubby, and gets right to work. Sometimes I get a hug when it is time for me to leave, but mostly it is just a wave as he is getting down to the work of play. His teacher shared that he is talking more and more. He is very independent, and does not seem to need teacher assistance or assurance in order to dive into a new activity. Currently his education plan includes encouraging him to point to and verbalize things he is looking at in a book, and encouraging him to wipe himself when having a diaper change. That's it!

Charlie also had a very positive conference. His teacher couldn't be more pleased to have him as a part of her class. She feels very good about how he benefits from participating in class. She said he does not talk much, except to express objection to something. Mostly he is busy doing. She said almost all of his free play involves dramatic (pretend) play, which was an IEP goal that we had, and I think we can cross it off as accomplished! He chooses to participate in circle time almost always, and prefers the messy, sensory table top activities. He pals around with a couple of little boys consistently, and tries to join in their play. He is also following complex sets of directions, and seems to be very well versed with the daily routine. Transitions go best when the teacher brings a physical object to Charlie that symbolizes what they want him to do next (like showing him a diaper when it is time to try the potty and get changed). I felt really great about this meeting. His goals are to continue to encourage participation in table top activities, and to continue to support his independence in the classroom.

Now, on to Check-Ups.

Charlie is due for a check-up in January, and I'll tell ya, our questions and concerns list keeps growing and growing, so I better ask for two time slots when I make that appointment!

Calvin had a check-up today, and it was great. He is now 26 pounds and 33 inches tall. His hemoglobin was back down below average (10.6) after finally creeping back into the normal range at our last appointment, so we need to focus on that again. No worries, though. It just means we need to actually remember to give him his multivitamin, and sneak some iron rich foods in more often. Yay for Kidney Beans!

The appointment concluded with two boys getting flu shots and taking it like men. I don't know how I ended up with children who recover so quickly from the shear inconsiderate-ness of getting "a poke". I should get them t-shirts that say "Will get Vaccinated for Stickers," 'cause really, at the end of the appointment, it is all about getting that sticker.

Wednesday, November 11, 2009

Deep Peaceful Sigh

Chili on the stove. Bread in the oven.
Two little boys being active yet pleasant.

There are times I pause to just breath in what feels like
domestic triumph.

It's good.

Sunday, November 8, 2009

All Natural

One of the things that gives me so much pleasure as a parent of these boys is simply to behold the uniqueness in each of my kiddos. Their individual personalities: Charlie approaches new situations with careful consideration, slowly easing himself into the new environment until pretty soon he is running full steam ahead with utter confidence. Calvin enters a new situation with little reservation, meeting and greeting all those in the place and putting himself right to work in the business of play.

There are also their physical attributes. Charlie has a soft and sturdy little body. Calvin is thin and light. Charlie's eyes are something of a navy blue with white flecks. Calvin's are light brown with a ring of gray around the edges. Charlie's feet are short and wide. Calvin's are long and narrow.

And then, there are the bonuses. Quirky, random things about the boys that I think are like bows God added when he gave us the gifts that are Charlie and Calvin. Fun little extras thrown into the mix of their genes by a Creator who no doubt works with a twinkle in his eye.

Case in point: Calvin's All Natural Mullet.

I can't tell you how sweet this little curl at the back of Calvin's neck is for us. It is like a bit of icing on the cake of this amazing little soul.

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It is a cause of wonder for all who notice it, as well. What in the world would cause one small section of scalp to grow hair so fast? And why is it the only part that grows in a curl?

Look how long it is when straightened out. Really!

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It is starting to get very long, and at times feathers out a bit for a fuller curl. Other times it bounces behind him when he walks. We will cut it off eventually, and no doubt preserve it in a zip lock bag, so one day we might show a future sweet heart Calvin's all natural mullet in addition to the customary naked bath time photos. For now, though, we will enjoy it a bit longer, marveling at the many ways we are created with such care and thought, and even a bit of divine humor.

Tuesday, November 3, 2009

The Immensity of Down Syndrome

Sometimes the weight of having this little boy, this Charlie-boy, in my life rests heavy on my heart.

I have to say most days we go about doing our little family thing in our little family way, and I don't give much thought to Down Syndrome. Charlie is Charlie, just like Calvin is Calvin, Ray is Ray, and Kim is Kim. We all have our unique personalities, strengths, weaknesses which may or may not have to do with our respective number of chromosomes.

Most days, when I do think about Down Syndrome my thoughts lead me to a stunned realization. I look over at Ray and say, "Ray, we have a son with Down Syndrome!" It still seems so uncanny.

But there are times when the shear meaning of Down Syndrome makes me pause, and fills me with fear and trembling, in the reverent sort of way.


Oh man, I don't know if I can articulate this well at all.

Maybe it is the school thing and looking at the big picture of his life, which I just don't do as much for Calvin, and feeling like it is up to me, to an extent, to map out a path for Charlie. Like, I need to pave the road for him and hope I end up in a place where he will feel confident and prepared to take over when he is ready.

It is the thought that Charlie has something that we don't all have. In his more simple way of doing things and feeling things and interacting with things, he is a more perfect human than I. Yet I am charged with his care.

It could be the thought that valuing people with disabilities doesn't seem to be a condition inherent to the human heart. Here, we need books filled with law to value our most vulnerable. In some places imperfect babies are left to the elements. In other places, abandoned to the system and ware housed. This scares me about the world, and about sending my boy out into the world. And I struggle to understand what it means.

Maybe it is just the sight of his too-small-to-almost-be-four-years-old body sprawled out on the comforter, and the sound of his raspy breaths as he naps on my bed this afternoon.

He's an incredible human, this Charlie.


I confess there are times when I've pondered the hand of God to create such a boy. I've pondered it in light of things I've heard said, things I seen done. Some people believe it is a tragedy to let such a person live, so they discard the child before he has ever tasted air or seen light. Others believe people like Charlie are sent into the world to give. To give love and light and truth and simplicity. They believe there is no mistake in an extra chromosome. They believe God meant it.

In our home group (Bible Study) this week we started a series that looks at the Biblical narrative as a whole. Of course, we started with Moses' account of creation in the book of Genesis. In the DVD series ("Nothins Going to Stop It!" by Bill Jaxson) we examined God's mandate to Adam and Eve to multiply and fill the earth. He was asking them to fill the earth with bearers of His image.

There is a line of thinking about why God even created the earth. It is an idea pondered by people way more intelligent that I (Jonathan Edwards, C.S. Lewis and others).  I will try to distill it here. The thought is that God has existed in absolute perfection for all of eternity. Because nothing and no one can even hold a candle to the absolute perfection of God, it can only be right that God is completely delighted in himself without being arrogant in any way. To make this very simple, God's plan in creation was to multiply his image (thus He created
human kind in his image and mandating them to multiply and fill the earth) so that His delight would be multiplied and increased. Again, with zero arrogance. It is hard to fathom.

After the fall then, it is apparent that though we multiply and fill the earth, we are multiplying a fractured image of our Creator. An image that is not wholly as God intended. From the moment we are born, our hearts are inclined to falter.

And then there is Charlie.

Imperfect in body and mind, and certainly inclined to fall as surely as his brother or mother or father. But, there is something about him. Something unmistakable. A simpler outlook, a purer motive. He is a gift to my heart, and indeed I learn much from him. I learn something of, well, a joyful-humility. A humility that is not embarrassed to be humble or meek, but delights in such a position. Charlie is completely delighted in himself, without any arrogance. Even in his meekness. What does it mean?


I learn other things from this boy. I learn to receive others into my life with a gentle gratitude. To accept the help of a stranger, the hug of a friend. I learn to rest. To take it slow when I need to. And, I learn to accept people, though I struggle at it. Plain and simple.

Raising Charlie... It is immense. It is sacred. And I hope...

I hope this blog extends a view of the practical, the spiritual, and the daily of raising a child with special, or just different, needs. I hope it comforts a new mother or father in their search for "what it all means" when grappling with a child's diagnosis and that feeling of being lost. I hope beyond hope that even one person faced with such immensity will find, as I have, the endless, boundless potential that such a human, imperfect as they may seem, holds for this world, and beyond. And I hope by reading here, you will be lifted up, because you are blessed in this path.
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