Sunday, October 26, 2008

Do Not Drive

I am a far better driver than I am a passenger. In fact....I get car sick as a passenger, so I am the primary driver in our household. In addition to the car sickness, I have some control issues. I just simply feel safer behind the wheel. There is a darn good possibility that if I do somehow end up in the passenger seat.....and if we travel far, at some point, I will tell you how to drive. Or at a minimum, I will push my imaginary brakes and/or I may gasp outloud and scare the poo out of you and cause you to crash. It's not pretty.....so just let me drive, k?

In no other area of my life do I desire to drive. God has my road completely planned out. He knows when I am supposed to move slow, and when I need to accelerate. He has planned areas for me to stop and soak it all in, and other areas where I need to grip tight, hold on and trudge through. Since He knows all of this, it is just best that He take the wheel and that I be patient on the journey and that I fully experience every turn....even the unexpected sharp curves, and the long-straight flat roads and running out of fuel. God even has a plan at those dead ends.

Even though it can be painful, sometimes I will look back on my journey like a map. Knowing that God was in control all along, I see those curves, dead ends and straight-aways in my life and it all makes sense. Every road connected me to here. I have arrived here, and here is where I am supposed to be, for now. I love that He has always known and continues to know where I am going.

This picture of my past, present and future roads has radically changed my prayer life. Instead of praying for God to do this or do that, I've learned to pray for His direction, to keep me on His road with Him at the wheel. I'm not snoozing in the back seat. I'm fully along for the ride and seeking what my purpose is all along the way.

In my prayers over the past couple of weeks, I've been praying about some situations and simply seeking direction, solutions and remedies. Not specifically, just generally. I've been consistently engaged with Jesus in the scriptures and in private worship, and in nature. He has presented me very clearly with His direction and His solutions.......very unexpected mind you....but solutions none-the-less. I'm so thankful He is at the wheel.

Sunday, October 19, 2008

Another Tasty Milestone

Ok......so my Shawn is incredibly independent. He is most definitely a "doer" and "mover", in Down syndrome terms. But one area where Shawn has really showed no desire is to give himself a bottle, or to learn to drink from a sippy cup. In fact, Shawn is 22 months old, and we still give him every bottle....and he does not assist. Obviously, we have to do this because he also will not drink from a sippy cup....and the boy has got to drink.

Finally, yesterday.......with a cup that does not frustrate him.......he has embraced the sippy cup....and is now enjoying sweet yummy apple juice.....independently. I'm not sure he'll be as excited about it with milk or pediasure.....but....baby steps.

It's sooooooooooooo cute. WATCH.


video

Thursday, October 16, 2008

Video of Asher and Shawn playing

Asher and Shawn take time every day to enjoy some pretty vigorous brotherly play. Shawn loves to climb on Asher and really, just be near him. It is so fun to watch. The other day, Shawn was cracking up at Asher. By the time I found the flip camera to catch this video...the cracking up had stopped....but the play was still fun. Enjoy.

video

Sunday, October 12, 2008

What?

I stumbled across this photo today and just couldn't resist posting it here. Something about it makes me feel good.......and I know that is gonna freak some of ya'll out..... but it's all good.



So, what would you call this?

Friday, October 10, 2008

Shawn learning how to do sign for "stop"

Shawn has been learning more sign language. In this video he demonstrates the sign for "stop". Usually he does it a little better than this....but this is so cute anyway! Watch this cutie pie. Oh, and also you can hear him try and say the word "stop". He is really doing well with his vocalization and just in attempting to mimic sounds. FYI, he's in speech therapy once a week, pretty intensely, but it is fun and extremely helpful. We're so proud of him, and enjoy him so much. What a joy and a gift we have in all our boys!

video

Air

Good morning Lord. It's a beautiful day today. Thank you for the gentle termperatures. Thank you for your spirit within me. I pray to serve you well today.

Wednesday, October 8, 2008

The Bubble

How can I even tell you what I've done, and why? It is so complex. I still have twirling fluttery feelings inside of me that border on raging out of control either toward me throwing something across the room to shatter before me and cut my flesh.....or just falling on my knees in tears. And the thing is...... it probably isn't even a big deal.

You might not understand, and that's okay, whoever you are. I don't even know who most of my readers are. I don't know.

I have created somewhat of a bubble in my home for Shawn. In our home he is not different. He is not retarded. He is not significantly special. He and Asher are treated the same, with the same expectations that they will obey, that they will learn good manners, that they will share and play fairly. I've carried this bubble over into their school....after all it is a school with a blended environment to include kids with Down syndrome, Autism, CP, MS, whatever...... It's a happy place where learning takes place and equality is practiced. It is perfect.

What I haven't really realized is that I'm in my own bubble. My head is in this world that believes Shawn will be loved and accepted everywhere he goes.....not just today as a toddler but in a few years as a tween and then later as an adult. Am I freaking nuts????? Those who see him today and think he is the most precious baby ever are probably not going to choose to sit beside him at the movie theater when he is 20. These same people who are so impressed with his abilities today are probably likely to be uncomfortable having dinner with him in the next few years when he might possibly have food hanging off of his chin and staining his clothes. He is cute now when he has a poopy diaper, but what about that accident that will happen to him in the 6th grade because he gets flustered around a pretty girl? What then? ARE THEY STILL GOING TO LOVE HIM?

Yesterday I was just innocently catching up on blogs and enjoying my reading time.....going through funny comments left on other blogs, etc. I happened across a comment left on another blog by a woman I have never seen before, whose blog I have never read........ and I allowed myself to be hurt and offended by a comment that she never dreamed would insult anyone. It was actually a funny story......until she suggested her son looked like he was "mentally challenged" or had "special needs".....and made some comment about smelling like urine and dressed in rags. I was beside myself with hurt. Not at what she said.....but at the realization that outside of our comfy bubble, people might actually think that about my son. My sweet child. So, I left her a comment. It wasn't mean or stabbing.....but it was a comment that I didn't need to make. I knew better. I read so much of her blog and saw nothing but a beautiful, tender, precious and loving woman of God who shares her life with others to serve God. She is really beautiful. Why did I feel like I needed to school her? I cannot imagine.....but that I am battling with pride. She quickly commented me with love and I think I've wiped up my mess.....but today I am just so sorry. I am literally sobbing in grief. (and this is why I want to throw things......lest you think I am aiming for her, I am not!)

Let me tell you what a mother of a special needs child has to endure some times.....and I'm barely 2 years into this...... mine is still sweet and cute and un-threatening to most......and I know it is going to change. I know it will......but here is the beginning.

1. At one point on Myspace there was a page dedicated to making fun of the hair of people with Down syndrome....that they all have the same bad haircut, and stick straight hair.
2. I get to read funny email jokes about someone not even being good enough to compete in the special olympics.
3. I receive emails about not wanting a retard (the next president) to run the country.
4. I will have to fight for my child to get a fair shot at education and not stuck in the retard room at the end of the hall on the furthest wing of the school.
5. I can't even get people to stop using the word "retard". This word makes me insane!
6. Someone once told me the opposite of smart is retarded. NO....the opposite of smart is dumb, or stupid, or not-so-smart, or un-wise. My mentally challenged child is actually very smart. But he is mentally challenged.
7. Other children in their discomfort and insecurities are going to be mean to my son, or they will be afraid of him.
8. I get to worry about his health, his upcoming open heart surgery, his thyroid, and pray pray pray pray so hard that he does not get Leukemia.
9. One day I was trying to enjoy a sweet article on the online newspaper about a couple, both with Down syndrome, who had just gotten married. It was an open forum for people to leave comments. There were about 30 comments at the time and most of them were such a low level of cruelty that I wanted to pack up my kids, move to the hills, and hide.

I have always been one to take a stand. I've opened up my mouth many times that I probably shouldn't have and I've caused some problems in the past. I don't want to hurt anyone. I didn't want to hurt that very sweet lady. This is my sensitive spot, I suppose.

I am not sure this post serves any purpose. My head hurts now and my eyes will be puffy the rest of the day. I am deeply in love with my children! I wouldn't change Shawn for anything....not even for him, because I think he is better off who he is. I am strong and have some braveity about me......but I am also afraid and I'm sure I'll be wounded many times over as a witness to the things in this life that hurt him. I am hurtable. I have Jesus and He is my fortress, and I'm just not afraid to admit that I need His covering of protection and His spirit to guide my heart. I know where He wants me.....and it is outside of the bubble.....where I am not allowed to get comfortable.

Tuesday, October 7, 2008

Randomness

Am I a danger to myself and others if I sit here prepared to blog about absolutely nothing? I have no idea what to say....just that my heart is pounding, evidence I must get something off my chest.

But what?

My house has been on the market over a week and not one showing. Grrrrrr.

Shawn is learning more sign language and thrilling me to my core.

My upcoming mission trip to Africa in December is fully paid for (praise Jesus) and I am fully horrified and getting cold feet. (Thank you to all of my "senders".)

Spencer is going to the Presidential Debate tonight at Belmont. I am thrilled for this experience for him and wonder if it will have a long-term affect on his precious life.

Although I am having some trouble adjusting to my new car and it's lack of everything fancy I once had, I am enjoying the small gas tank and the long miles.

I am excited that my friend Laura and I are going to celebrate our 20th anniversary next week. She is a precious friend to me.

I had a darn successful yard sale this past weekend, AMEN.

Asher, Shawn and I had a wonderful time at Gentry's Farm on Sunday, enjoying pumpkins, hay ride, toy tractors, and bumping into sweet neighbors.

It rained this morning. I wanted to stand in it, be washed, cleansed and renewed. But I didn't. I'm still all dirty.

My birthday was 10/3 and now I am 38. Thirty-eight. U.n.b.e.l.e.i.e.v.a.b.l.e. That means I'm almost 51.

Why isn't there a cure for breast cancer yet? Seriously?

I am nothing without Jesus.

I am dying to know who is gonna be President. Either way I think we'll all need to wear helmuts the next several years.

I am going to see the horses later today. I will put my clean face against their muddied coats and take a deep deep breath. Nothing smells better than a horse.......well okay, the smell of my children is the absolute best, but the horses are definitely next.

I need cake.