Saturday, November 29, 2008

Special shirts for families with special children

While at the mall earlier this week I noticed a lady wearing a shirt that read My child has Down Syndrome but the Down Syndrome was crossed out and it read HOPE instead..My Child has Hope!

I went to the website that she bought it from and found the source to be very cool. They do not currently have one for Spina Bifida, however I have sent a request to see if they can make one that reads, "My child has Spina Bifida (crossed out) Determination."

The shop is called My Real Diagnosis. Visit it. You just might be inspired.

Remodeling job in progress

We are in remodel mode at our house. I am happy about it, but I hate the mess of a remodel job. My entire house is constantly covered in a light white dust...I wipe down and it comes right back. When it is all done it will be worth it though!

Our house is a bi-level. The front door area is super small. You can fit 1 person on the landing and then you have to go upstairs to the main living area or downstairs to the secondary living area.

The living room is at the top of the stairs. There is a 1/2 wall between the living room and the stairwell. We added to the 1/2 wall and put in build-in shelves. We Some are going to have doors (for storage) and others will be left open The doors and the outer casing is going to be a dark brown (think coffee) and the shelves will be eggshell (white). The Designer is building in a space for a computer so we don't have to have the laptop on the tv tray in the middle of the living room any longer. :)

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Right inside the front door at the landing The Designer put in a HUGE hole (which the girls helped with). It was originally going to be hidden doors so we would have an easier way of getting furniture downstairs (the way it is now, it is nearly impossible to get any large furniture down there). It will still have the hidden doors, but we had a light bulb moment and decided to put a fun slide there for the girls to get downstairs on! They have no idea and we are going to surprise them with it Christmas morning...if Bug doesn't become the wiser before then. The doors can be shut when not in use but when the girls want to play, we will open one door and they can slide right into the playroom...how cool is that?!?!





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We will eventually taken the short wall out that is going up the stairs and put in a spindle hand railing to open that space up.

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The playroom downstairs is going to be getting a makeover. I am thinking ladybug themed room, but haven't decided for sure yet. I am not very creative when it comes to decorating (as my friends and family can attest) so we'll see what happens down there.

The part that I might be most excited about is the flooring!!! We are taking out our carpet in the living room, in the halls and on the stairs and putting down bamboo floors. We are seriously contemplating putting in marble flooring in the kitchen, dining and bathroom too, but we haven't fully decided on that yet. We have a large yellow lab (about 110 lbs) and he tracks in dirt and mud once in a while. I often clean the carpets myself or professionally because the carpet gets dirty fast, but since we are planning to pull it out soon, I haven't steam-vacuumed or hired anyone so they are even more gross than normal, making the idea of hardwood floors even more appealing. Not to mention that Lucky's pooch hair will not be nearly as annoying when I can sweep it as when I have to try to vacuum it out of every nook and cranny.

Wednesday, November 26, 2008

Day After Thanksgiving Sale - Luckybug Boutique

Check it out!

I am offering 25% off on ALL products on Friday, Nov. 28th only. Please visit my shop and take a look around.

Luckybug Boutique

Sunday, November 23, 2008

The school situation

It has been nearly a week and I think I might just now be ready to actually "talk" about it. I will give the very short version here, however, as I don't want to get into details for legal reasons.

On Monday morning Bug was at school and Princess and I were running errands. When I got home I listened to our messages and Bugs preschool teacher had left a message something along the lines of, "Please plan to pick up Bug from school today or drop her off tomorrow. We need to do her hearing test again because she was being defiant and kept taking her headphones off. We aren't sure if she passed or not."

As soon as I heard that they put headphones on her I got concerned. I immediately called the school to let them know that under no circumstances is Bug allowed to have headphones on.

(A bit of history here...Bug has a programmable shunt which regulates the fluid that drains from her brain. The settings are set by magnets. If she is exposed to magnets and we are unaware of it, the settings could change and we may not know until she shows signs of shunt failure hours, days or even weeks later. Symptoms of shunt failure/problems can be eye rolling, seizures, headaches, vomiting, etc. The consequences can mean brain damage and even brain surgery.)

I know without a shadow of a doubt that I discussed this very important detail with her teacher. I was even asked to come into the classroom to go through the items and look for magnets in the toys, on the walls, etc. However, she now claims that she doesn't recall that I gave her a handwritten note and that we discussed this very important topic.

I immediately made an appointment for Bug to see the Neurosurgeon and learned that Bug was in fact ok. Praise God! I did learn about a young boy that was in the office a week earlier that did not fair as well from his teachers mistake. He was doing a "lab" at school which included the use of headphones. It wasn't until he had suffered flu-like symptoms for nearly a week before it was discovered that he was actually being exposed to magnets. When the parents finally discovered this disturbing news, it was too late. He had already suffered brain damage.

Armed with this true story and my own anger I began addressing those at Bugs school one-by-one. Her teacher seemed so indifferent, which really rubbed me the wrong way. Her principal was concerned for Bug but wasn't sure how to guarantee it wouldn't happen again besides putting a note on the door that it was a "no magnet" zone...yeah, it is a great start, but it needs even more than that. I have spoken with the schools receptionist who asked that I please explain why magnets harm her so that maybe that will help her remember that Bug can't be around them (I appreciate the desire to learn, but it really is inconsequential as to WHY she can't have them near her...the fact is, if I asked them to keep them away and they promise to keep her safe, they need to do it regardless of whether they understand why they need to do it.) I've had discussions with the community health department. The list goes on.

Apparently the school is very concerned about lawsuits. How about being concerned about MY DAUGHTER?!?!?

I was about 2 seconds away from pulling her from the program, but the truth is that she loves going and taking her from that environment would harm her too. That isn't fair to her. So I have to trust these ignorant people to keep my child safe. And that is the problem...I don't trust them at all. I don't think they would ever harm her intentionally, but how do they know when someone is wearing a magnetic bracelet or necklace? How about toys that have speakers...do they remember those? Bags have magnets. Cell phones have magnets. Purses have magnets. How do I trust that they will remember these small details?

Keeping Bug safe is a full time job. One that I wouldn't trade for the world, but it isn't easy. I have worked hard and God has blessed her so incredibly that I would had for one stupid person to take all of this blessings and flush them down the toilet because they exposed her to magnets which in turn caused brain damage.

So, I am going to do what I have had to do ever since her birth...trust in my God to keep Bug safe. I know He loves her more than me even and that brings peace to my heart.

(For the sake of keeping this reasonable in length, I have left out a lot of the story but hopefully there is enough here for you to get an understanding of the severity of the situation)

You're Still the One

Jan. 15, 1993 was a day that changed my life forever. It was the very first time I ever laid eyes on The Designer. I was 16 years old. On Jan. 15, 2009 it will be exactly 16 years since we first met. After Jan. 15 I will have known The Designer longer than I have not known him in my life...it seems impossible really, but it's true.

We have had ups. We have had downs. We have had excitement, boredom, confusion, laughter, tears, faith, hope, and love. We were married when we were only 19 years old and many, many people thought we would never make it. I have no idea what our future holds, but I do know that regardless, we will be standing hand-in-hand by each others sides.

There is one song that I would claim as "ours." Here are the lyrics and at the end you can listen to the song.

(When I first saw you, I saw love.
And the first time you touched me, I felt love.
And after all this time, you're still the one I love.)

Looks like we made it
Look how far we've come my baby
We mighta took the long way
We knew we'd get there someday

Bridge:
They said, "I bet they'll never make it"
But just look at us holding on
We're still together still going strong

Chorus:
(You're still the one)
You're still the one I run to
The one that I belong to
You're the one I want for life
(You're still the one)
You're still the one that I love
The only one I dream of
You're still the one I kiss good night

Ain't nothin' better
We beat the odds together
I'm glad we didn't listen
Look at what we would be missin'

(Bridge)
(Chorus)
(Chorus)

I'm so glad we made it
Look how far we've come my baby

Thursday, November 13, 2008

All aboard the mommy guilt train

The train stopped and I got on today...*sigh*

Let me start off by saying that I am pretty good about keeping the mommy guilt in check. It creeps in once in a while, but generally I am aware of the triggers and don't fall into the mommy guilt trap often. Getting to this place wasn't easy, but typically I'm there...today, however, my mommy guilt is in overdrive!

At the end of last week Lil Bug and I discussed her interest in riding the school bus to school. Remember, she is 4 years old (barely) and attends preschool 5 mornings a week. She attended last year also and since the very first day of school I have driven her and picked her up every single day.

There are a number of reasons I have not put her on the bus. Most of them are decent reasons, but the truth of the matter is that I was not ready to send her on the bus. She was ready, but I wasn't. I was sheltering her from "the real world" and convincing her she needed me for as long as possible. I wasn't doing this intentionally, but in retrospect, that seems to be the case.

So, back to the present...she mentioned that all of her friends ride the bus and she wanted to know why she couldn't ride with them. I gave her some silly answer like, "you don't need to ride the bus because mommy is able to bring you and pick you up every day." She seemed content with that, but I began to really evaluate my reasons for not having her ride to this point.

So, after some consideration I mentioned it to her teacher and they got the ball rolling. I received a call earlier this week from the district transportation lady and we agreed that Lil Bug would start riding the bus next week on Monday. She said a bus driver would call me to discuss the time and location, etc. I was still waiting for a call.

This morning I did as we do every day...rushed around here like crazy ladies getting Lil Bug ready for school and Lil Princess ready to go outside in the cold. I took Princess out to the car and was returning to the house to grab Bug when suddenly a bus appeared at the end of our driveway. I asked him why he was here and indicated that he was supposed to call to discuss times and we were to start sending Bug on the bus on Monday. He said he was doing a "trial run" for timing purposes but since we were ready, he wanted to take Bug with him.

I ran in the house and announced, "Bug! The bus is here and you get to ride it to school." To which she responded, "REALLY?!?! Where is it? Oh, mommy, I get to ride the bus!" I grabbed her walker, her backpack and quickly whisked her out the door and to the street.

I climbed up on the bus and with the assistance of the driver, she snuggled into the seat. I helped buckle her in and all the while she had a grin plastered across her face. I stood there for a moment or two discussing details with the driver when suddenly Lil Bug burst into hysteria. She was sobbing so hard she couldn't even talk. The driver said, "this is normal for some kids the first couple of times...just go, she will be fine." I took a quick glance over and my beautiful first born child and saw fear and confusion in her eyes. I jumped off the bus and away they went.

It all happened so fast that I didn't even get pics of her on the bus for the first time. (I will take some the next time she is on the bus and pretend it was the first time!!!)

I came into the house (at some point I had brought Lil Princess back into the house) and there sat Princess crying and saying, "cee-cee." At that moment I lost it. I had just sent my scared, tiny, trusting 4-year-old on a bus with a stranger with minimal discussion and absolutely no warning.

I cried. Princess cried. And, as I learned when I called the school and talked to her teacher, Bug was crying too. In fact, Bug was crying so hard that they had to take her out of the classroom. Fortunately her physical therapist (Stephanie) was in the building working with another student. Bug has a great relationship with Stephanie and was more than happy to spend some time away from the class with her today. Stephanie talked her through her fear and promised that she would personally put Bug on the bus to return back home to mommy. Bug was thrilled with that idea.

Noon rolled around and her bus rolled up in front of the house. I nearly ran down the door trying to get out to her. I half expected to see her sobbing again and half expected to see her laughing and having a great time on the bus. Fortunately for both of us the latter was accurate. She was smiling and laughing and having a great time. The bus driver said she was delightful and even asked him to sing a song with her on the way home but he replied, "Mr. Ken doesn't do that kind of thing." LOL

While I was waiting for her I realized that the biggest problem of the whole morning wasn't that she was riding the bus for the first time but that I hadn't done my job properly to prepare her for it. I didn't set the right expectations. She trusts me for that and I failed.

When she came in the house I sat her down and explained that the bus surprised me by coming today. I apologized to her for not giving her ample time to process and prepare for it. She said, "I forgive you, mommy" and ripped off her jacket, walked to her room and she had Princess played in there for nearly an hour...they were happy to be reunited!

So, I know that she is not totally scarred for life for what happened this morning and the truth is she is already over it. I am not over it yet, however. I am good at forgiving myself when I make mistakes but at the moment I am not ready to do that. I regret that I didn't just tell the driver that he could keep on going without her today and we would be ready on Monday but I didn't do that...that is my ultimate regret. So, for the rest of the day I will work on coming to grips with the fact that I let her down today and acknowledging that it probably won't be the last time in her life that it will happen. :(

Wednesday, November 5, 2008

and a few more

These were taken when we first tried on the costumes a week or so before halloween...try to ignore the obnoxious tags that are still attached. :)








































































Because I'm feeling down today...

here are some pics that make me smile and lift me up. Enjoy!





























































God Bless America

Well, the election day has come and gone. I can say that I did not vote for the current president-elect. The reasons are personal and many. I am concerned about a "socialist" America. I'm worried about the direction of our country and its role globally. But, even so, I am proud to be a part of a country that looked past color last night and voted to elect the first African American president. Maybe now we can look less at race as a nation and more at being American.

My prayer is that our country will return to its Christian roots. I have always prayed that Gods will be done and honestly, it very well might have been...I don't know. Time will tell.

Either way, today is a new day. May God bless America!