Jeremiah 29:11 For I know the plans I have for you, "declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Thursday, November 11, 2010

We had a great family Trip to Branson in October. We packed a lot of fun into 1 week. Like the titanic museum, an awesome magic show, the Noah musical and Silver Dollar City. At Silver Dollar City while waiting for a particularly big roller coaster Steven seemed a little nervous as we watched the riders get on and off. I told him he didn't have to ride, and he looked at me very sternly and said "I have to do it." He takes his roller coaster riding seriously. He did indeed love and wanted to go again.

Friday, October 1, 2010

Steven was so sweet to Scott (his Dad) recently when he had a migraine. We were having guests for dinner and I was busy cooking and Scott had one of his migraines, but this one was worse than normal. I was busy getting ready for our dinner guests (and I was not blessed with the gift of mercy) and Scott was trying to sleep a little and see if his headache would go away. If you know much about a migraine headache you know that the smells from dinner weren't helping the matter any. Steven is so compasionate so he was sitting with Scott and trying to help and a bit worried about his Dad. When Scott couldn't take the smells any more he decided to walk around the block to get some fresh air. Steven was so cute he held his Dad's hand and walked around the block with him. It was the cutest thing.

Friday, September 10, 2010

Well, we survived. Bekah left for her 2nd year of college and Steven started high school. I can hardly believe it. Steven is doing pretty well, but think he is a bit overwhelmed. There are so many students that just getting down the halls can be a challenge. He comes home and just doesn't have much left. He spends much of the afternoon in his imaginary world talking to his "friends". I think he likes it there because they do what he wants. Maybe I should try it:). It would be nice to be in a world where people do what I want. Hopefully he will settle in and get used to his routine and start talking to us. I'll try and keep you posted.

Saturday, August 28, 2010

Sweet 16

I can't believe it. 16 years have flown by. For the most part I feel like the luckiest parent in the world. I know that feeling will change but I'll enjoy it while I can. Steven is a blessing in ways I could never have imagined and we have the best friends and support we could ever ask for. Steven has a way of bringing people together.

Wednesday, August 11, 2010

Steven loves to dress up. Some days I get so tired of it. It would be so cute if he were 6 or 7, but 15 almost 16? And some days I just give up! Still he’s pretty cute.

Steven has been saying the funniest things lately. It is so great to have him trying to use vocabulary even if he doesn’t do it correctly. It might even be better when he does is incorrectly. He calls hummingbirds, honeybirds-so cute. And one day when he was driving with his sister Bekah and she wanted him to roll up his window he was frusterated with her and said, “Oh Bekah, you leave me nuts”. I love it!
He went to camp last week and kept them laughing too. When he met his councilor she introduced her self with, “Hi, my name is Arden it sounds like Garden”, so he called her Garden all week. He stole her heart and told her he loved her. It was so fun hearing about all he did. Usually when he comes home all we get is, camp was fun, but this time he told us he swam, tried the zip line but chickened out (he said he would do it next year), danced, rode horses, and fished. When asked if he caught a fish he replied, “Almost”. He said he was afraid of them. He seemed so grown up when he got home. It is a nice break for us when he goes to camp but our home is just missing something when he is gone and it is always so fun to get him back. He was one of the councilors favorites (of coarse).
One thing that is a bit difficult when he gets home is that he wants to have something to do all the time and it is just not like that at home (boring). I try to do something each day, but still feel guilty when I see him wandering around or constantly trying to get me to do something with him or working on us to take him out to dinner (his favorite sport).
As bad as I don’t want summer to end school will be a welcome distraction.

Wednesday, July 7, 2010

I don't have a picture to go with this post so you will just have to use your imagination. I have been leaving Steven home alone for short periods of time for about a year, but that practice my have to stop. About a week ago I was leaving to have lunch with some friends and Bekah (Stevens sister) was on her way home from work, so I decided to go ahead and leave. I told Steven Bekah would be there soon (which meant within 15 minutes) and went on my way. I never dreamed how much could happen in 15 minutes. Steven called his sister twice, me once, his Dad once, Bekah's old boyfriend once and....911!. Yep, he did. They responded as 911 ought to with, "911, what is your emergency". Well some how he proceeded to tell them that there were bad guys in the house and someone was dead. They immediatly send a policeman to the house, but he can't enter until backup arrives, so he is parked
inconspicuously accross the street. Bekah arrives home thinking what is going on over there. But as she exits her car she hears, "Hey,...Hey you, come here", being whispered from behind her. She just about jumps out of her skin (and like any teenager immediatly thinks she is in trouble). The officer asks her to come out to the street behind some trees so they can't be seen from the house and tells her there has been a 911 call from this location from someone who speaks spanish and someone in the house is dead!!! She breaks down in tears and tells him the only person home is her brother. The officer can't go in because backup still isn't there and for about 6 or 7 minutes (but it seemed like an eternity) she thinks Steven is dead. Then suddenly Steven pokes his head out the door and notices his sisters car and says "Bekah?". The officer tries to get him to come out, (he still thinks there are bad guys inside), but Steven sees a police officer and jumps back in the house and closes the door. Bekah explains that if Steven doesn't see her he won't come out and he finally lets her get close enough to the house so Steven can see her and then he comes out. By then the other officers are arriving and they ask him if there are bad guys inside to which he enthusiasticly replies, "yes". Bekah tries to assure them that he is making it up, but they must respond as if there were a real threat. So 5 officers converge on my home from every angle and check every nook and cranny, but no bad guys. After they are satisfied that it was all a mistake they leave. All this happened in about 25 minutes while I am happily oblivious with my girlfriends having lunch. When I get home and hear the whole story I still want to know who the spanish speaker was that called 911. When I am able to speak with the officer who responded he assures me there was no spanish speaker. The 911 dispatcher couldn't understand Steven so she made and assumption. So needless to say, Steven won't be spending a lot of time home alone anymore.

Saturday, June 26, 2010

wisdom teeth

Steven had to have his wisdom teeth pulled in May and yes it was stressful, but God had a lesson in it for me. Steven gets very nervouse going to the hospital because he had so many surgeries as a child, so going in for this we knew would be hard. They decided to do it at childrens hospital because there could be complications. So the morning of May 20 we arrive and at first things seem to be going fine. Steven is being so brave, but as we got closer to the surgery he was getting a little nervouse. It didn't help that we had to wait around 2 hours for all the pre-op protocol to be finished. They even gave him valum, but it had almost worn off by the time they were ready for him. Since he was a little uneasy they let us walk beside him down to the operating room. As we are walking he is getting more and more worked up and by the time we are going in he is crying and reaching out for us and begging us not to leave him:( It was so hard to see him like that. Inside the operating room there are about 6 people waiting to do there jobs and Scott and I are sitting on each side of the bed trying to calm him down, I am doing everything I can to assure him I will be there when he wakes up and that it is going to be o.k., but nothing is working. Scott finally grabs his hands and looks at him and says "Steven look at me, look in my eyes", and as soon as Steven looked in his Daddy's eyes he calmed down. It was quite amazing. Even the doctors were amazed, they had never seen anything like that. He took a deep breath and looked around the room and said o.k. I'm ready. It was so sweet, but it took me going half way around the world to Uganda a few weeks later to understand what God was teaching me through that. As I was sharing Christ with the people in Uganda and so out of my comfort zone that I was litterally praying while I was speaking I saw that picture of Steven looking into his Dad's eyes and how all the scary things around him faded away and he had the strength to go ahead with something he didn't understand and was terrified of, and that is what we are supposed to do, keep our focus on our heavenly Daddy and all the scary things around us fade into the background.

Saturday, May 8, 2010

Oh, what a week. Steven must be able to sense that the school year is coming to a close. He just hasn't been himself. A little defiant, a little uncooperative, very focused on the fact that his sister is coming home from college in few days. He is so absorbed with this fact that it is all he talks about. Even to his imaginary friends. Which is about to drive me nuts. I would like to talk to a professional about this behavior that has increased dramatically this year. He talks to himself and his invisible friends constantly. He has fights with them and interacts with them to the point that he would rather not talk to people that are actually there. I don't know if it is a faze that he will outgrow or if I should worry about it and try to get him to engage with me more. Of coarse what I want to hear is that it IS just a faze and he will outgrow it in time. I have to laugh sometimes though as I listen in on his conversations. At times he will vocalize both sides; I have heard him insult himself and then reprimand himself for doing so. It is one of those times you wish so bad you had a video camera running (I would have won $10,000 more that one time if I had). So to top this week off, yesterday when Steven came home from school I noticed that he wasn't wearing his hearing aids, which isn't all that unusual, but when I asked him where they were he answered, "I threw them away at the movie theater." His class had gone to the theater to see the movie Oceans so there was actually a possibility that he was right! Aagh, No, he couldn't have. I continued to press, but got the same answer every time. I finally resorted to calling his teacher to see if they (the hearing aids) had been seen since the movie outing. Unfortunately the answer was no. So I angrily order Steven into the car so we can head to the theater to look through the trash. Yes, there is steam coming out of my ears. I am still quizzing Steven, where did you through them away, why? Why? Why, again? I am only being met with a confused look and the facts, "I threw them away at the theater.” As we drive I call the theater and ask if it is possible that they haven't taken the trash out since the kids were there, and to my surprise they hadn't. Yeah, a little hope builds. When we arrive Steven goes straight to the trash can and says, "yes, right there mom". We are met by a nice man who offers me plastic gloves and I go to it. Searching through popcorn, coke, and candy. I am thinking there is no way they are o.k. If I find them they will be floating in a sticky, gooey mess. After searching one and a half trash cans I see them! I am speechless (which never happens to me). There they are! I feel my heart begin to slow and Steven who is holding the flash light for me feels such relief that he begins to sob. I don't know for sure why he burst into tears, but after a difficult week with such a dramatic finish I felt a little like crying too. I can't believe it. We praise God and when we are in the car we pray thanking Him for keeping them safe and dry and showing us right where they were. It's only been one day and I can already laugh about it. The things we must do as mothers, dumpster diving! There aren't many things I won't do for this face.

Saturday, April 17, 2010

Spring Break!

These are always difficult weeks if we are just at home and not on a vacation somewhere. I always feel like I have to be an event organizer. So we started off the week with a pretty good bike ride. Steven is doing great with his riding, but I sometimes forget that it still takes a lot of focus for him. We rode around town, which was only about 3miles, but there are a lot of turns. One time as we made a hard right I heard the snow crunching behind me (yes, there is still snow here) and Steven saying “I’m o.k., I’m o.k.” I turned around to find him backing out of a snowbank convincing himself it was alright. He got right back on like a trooper and we continued on our way. By the time we got home he was drenched in sweat and exhausted. He continued to tell me how tired he was for the rest of the day and could hardly hold his head up at dinner. Wow, if I could only get him to do that everyday.
Then later in the week I got to go skiing with him with the disability program. It was the first time I ever skied with him. I am so amazed at the physical gains he has made this year. Skiing used to be quite the process for him. In the past it took two teachers and all there strength and tenacity. But now he is finally skiing independently. We spent the morning with an instructor so I could see where he was as far as his ability and then after lunch he and I were on our own. It was so fun to see his progress and I could finally see a day in the future that we could go out and do this together.
Our last outing of the week was a fun trip to the Denver to the Zoo. We go to be outside and enjoy a picnic with one of our good friends and then enjoy the zoo on a warm spring day. All in all is was a pretty good week, but I am ready to get back to our routine and stop being the activity director.

What will we do this summer?

Wednesday, March 24, 2010

We picked Bekah (Steven’s sister) up from the airport this week so he is in heaven with his princess home. While we were getting ready to go to the airport we decided to fix Steven’s hair so it would look good when he saw her. So while fixing his hair I asked him if I could put some goop in it to make it spiky. He looked at me and said “Did you say poop?” I laughed so hard I thought I might bust something. Did he really think I would put poop in his hair?

Monday, March 8, 2010

Steven and I were having a lazy Sunday night at home last night when I asked him if he wanted to play a game. He responded with I want to color. He had been given a coloring activity page at church that day, just as he had dozens of times before. But he usually doesn’t do anything with them. But last night he asked to color it. I thought o.k. whatever. I got him the crayons and left him at the table thinking, right, in a few minutes or less he’ll say I’m done and there will be a few markings on the page. Steven just doesn’t do much of this kind of play independently. I am used to sitting with him and directing his every move if I want him to do something like color or practice writing. I was sitting vegging in front of the TV waiting for the “I’m done” when I realized it had been a while since I heard anything from him. I looked around the corner to find him extremely focused on his page. When I got over to him I couldn’t believe what I saw. He had colored the whole page and with purpose. He then proceeded to tell me that the person he had drawn in the middle of the page was Tinkerbelle. I felt the hot sting of tears in my eyes and just began to cry. I knelt down and gave him the biggest hug and told him how proud I was (yep, I am crying right now as I recall it). There are times I just give up on Steven ever developing some of the skills we all want our kids to have, and doing these kinds of tasks was one of those things I thought he would just never do. Just when I finally give up God surprises me again. Who ever thought that a simple coloring page could evoke such strong emotion.

Saturday, March 6, 2010

Steven goes through fazes depending on the movie he is into at the moment. Most of the time they involve a prince or someone who is the hero to a damsel in distress, and in the end they fall in love and live happily ever after. Some of his favorites are Enchanted, Aladdin, Hannah Montana, The Little Mermaid and currently The Hunchback of Notre-Dame. He always considers himself the prince and his sister the princess. So he watches the movie and then acts it out, continuously. He wears hearing aids so he doesn’t always get the right pronunciation of the characters and I had to laugh when after watching The Hunchback for the 5th time this week he said he was “Crazy Photo” (Quasimodo), and the Gypsy girl was cheesy girl. We love these mispronunciations they always makes me smile. So he is currently wearing a cape and walking all hunched over, but this “Crazy Photo”, has a belt and sword. Steven must always be the prince. He considers himself the prince and his sister his princess and he fights evil dragons for her all the time. He loves to pretend he is rescuing her from and evil dragon and then he and she will live happily ever after. It’s funny, but he seems to be fine with her having a boyfriend. That may change when she finally gets married and doesn’t live here anymore. There may be a sword fight.

Monday, February 15, 2010

God amazed me again today. Here we are having a lay around and get Steven well day and God sends and angel to cheer him up. Steven absolutely idolizes his big sis’s old boyfriend Garrett. He thinks he is so cool. So today Garrett was going to walmart and called to see if Steven would like to go with him, just to get out. What a blessing, for Steven to have a peer to go do something with, and for me to have some free time. It is so encouraging to see a youth reach out to a kid like Steven. What a small but meaningful gesture.

Sunday, February 14, 2010

Sick!!! Happy Valentines Day

Steven has a terrible cold. I hate it when he is sick. It is so sad. Because of some anatomy issues that are normal in people with Down syndrome it makes having any kind of sinus problem worse. He just can’t breath through his nose at all. We work on him with sinus washes and nasal spray and cold medicine, but it is just a horrible week no matter what you do. So here we go again. But it is the first time he has been sick this year and that is such a blessing. Years ago when he was under 8 we spent most winters in and out of the hospital, on constant antibiotics and having ear and sinus surgeries. Those were tough years. I praise the Lord that I was younger and had more energy because we just operated on no sleep most of the time.
But even though he has had sinus surgery to open up his sinuses, and his tonsils and adenoids removed he still struggles with any kind of sinus illness. He is such a trooper. He takes his medicine and when it works tells me how he is not sick anymore, only to have the symptoms return a few short hours later. I will pray that this one will go away on its own (and soon) without antibiotics. And maybe next time his immune system will be that much stronger.

Thursday, February 11, 2010

Steven has always loved guitars and has at least 3 toy sized ones. He jams out on them and sings love songs to his sister. So we decided to try Steven in guitar lessons. We were lucky enough to find a guitar teacher that has a brother with special needs. He was more that happy to give this a try. I am happy to report that it is going well. After 4 lessons, Steven is learning to play some simple chords. I have to admit I was a bit skeptical, but once again Steven has exceeded my expectations.

Monday, February 1, 2010

School Fund Raisers

O.K. Steven comes off the bus with a great big smile and a baggie full of something he is excitedly holding out and talking about as he comes up the front steps today. When he finally gets in and explains, I find that he has been given 9 candy bars to sell for his choir class. You’ve all been through this right? The choir, or band or whatever needs to raise money so they send your kid home with a box full of candy bars to sell to your friends, neighbors and relatives. You groan and ask how many are in the box and just right a check. After all it is better than walking around your neighborhood in the freezing cold or taking them to the office. Well not if your Steven’s mom. How could I. He was looking at me with those big blue eyes and telling me how he was going to sell them to people for $1. If you could only hear him. So I finally agree, but I explain that I need to shower first. As soon as I get out of the shower Steven says, your hair looks fine mom. He does not want to wait for me to dry it. Laughing I tell him he will just have to wait. He stands in the doorway to the bathroom the whole time saying, your hair looks fine, mom. When we are finally ready to go I have to stop off at the post office to get the mail. When I come out he has his window open and is waving to me. When I get in the car I find out he has sold a candy bar from the car window. How could anyone refuse his face? So we make the rounds and sell all 9 candy bars. I am thinking, that was a piece of cake, they should have given him more. Then he begins to tell me how we need to go home so he can put the money in his wallet. Uh, Oh. With all the excitement I didn’t even think about the fact that he thought he was selling this stuff to make money for himself. You should have seen his face. Of coarse that is what he thought. Why else would he go to all that trouble? Well he accepted it pretty well and after all we had so much fun. It is so funny that after 15 years I still have trouble seeing through Steven eyes. I learn something new everyday.

Saturday, January 30, 2010

Dessert Friday!

Yesterday was dessert Friday! We had to stop having dessert so often (no easy task), because Steven is struggling with his weight. So we started having dessert Friday. So every Friday Steven wakes up in a good mood and announces “Happy Friday”. Unfortunately it doesn’t mean we only have dessert on Friday, because there is always some special occasion. So we usually have dessert weekend (I have got to stop this).
I decided to start writing about my experiences raising Steven as well as other crazy things about my life. I am terrible at journaling so I don’t know how this is going to go but I am going to give it a try. I am calling this “Blessing in Disguise” because that is exactly what it is like to have a special needs child. When your child with a disability is born you think; this is going to be terrible and life changing (and your right) and that God must have something to teach you (right again), but what you don’t expect are the ah ha moments that take your breath away. One example of these moments is when Steven at 15 finally learned to ride a bike. Everyone knows that it is a big deal to learn to ride a bike at any age. The parents are excitedly on the sidewalk with the video camera as the little tyke rides by, pedaling furiously with a big smile on their face, but when the little tyke is 15 and 130lbs the joy is inexplicable. We not only waited a long time for this we weren’t sure it would ever happen. Only after he learned did we find out that only 10% of children with Down syndrome ever learn to ride a bike. I couldn’t believe it, he was one of the 10%. Wow! Once again God has blessed me beyond belief. I hope this will be a source of encouragement to some, but there may be days that it is just a way to vent some frustration. In any case I will attempt to chronicle some of my life’s journey.