Ask most any parent of a child with Down Syndrome, and they will tell you their Down's child is the most amazing person they have ever met. Tara and I are among that group.
To put it simply, the past 13 months with Laura have been amazing. I cannot remember a more fun, exciting, scary time in my life. If I had it to do over again I would never change a single thing in a million years.
If someone approached me today and said, "The medical field has the ability to make your daughter 'normal', are you interested?" I would throw that person off of the the nearest tall building I could find. I would pray the person comes to a saving love of God on their way down. Laura is truly one of God's miracles.
As some of you know, Laura has been looking forward to being a big sister. By our calculations, Tara was a little over 9 weeks along and was due on February 25th. We had an obgyn appointment to day to confirm the pregnancy, and the due date.
While sitting in the the exam room, Tara looked at a chart on the wall, and figured the baby would be about 1 inch long. When the doctor came in, we answered the standard questions. Yes, Tara took 2 pregnancy tests and they were both positive (strangely, the one I took was negative). Yes, this event last happened on this and such date. Yes, our internal medicine doctor confirmed the pregnancy test with a urine test. The doctor agreed that all indications are that Tara was pregnant.
So he started the physical exam. The ultra sound found the placental sack right away. It was right where the doctor expected it to be. He kept changing the angle like he was looking for something.
After a couple of minutes he told us he was not happy about what he was seeing. More specifically, what he was not happy with what he was not seeing. He could not find any indication of the baby in the sack. That means there was no viable fetal tissue. He then showed us an example of how big the baby should be on the screen.
Next he measured the placental sack. Its size was more consistent with a baby that was about 6 1/2 weeks along. But again he could not find any tissue that would indicate a baby. His speculation is that about 4 to 5 weeks ago the pregnancy failed, and Tara's body just has not gone through the miscarriage procedure yet.
This occurance is called a missed miscarriage. It is extremely rare.
He told us there were 2 options. The first was to let Tara's body abort the pregnancy on it own (let Tara eventualy have a miscarriage). There is no telling when this will happen.
The second is to schedule a simple out patient procedure that will remove the pregnancy tissue, and allow Tara's body to heal much more quickly. This is not an abortion since there is no baby.
I am not sure how I feel about this second procedure. On the one hand, there is a part of me that wants this child, and keeps wondering if there is a baby, and it is just not far enough along to be seen on an ultrasound. But if there is a baby, then we would have had multiple positive pregnancy tests weeks before we were pregnant. That would be rather rare to say the least. I am not saying that God cannot do that, I just cannot imagine why.
On the other hand, I want my wife to be better and suffer as little as possible, so the second option is best. I am just not ready to say it out loud yet.
This baby has been a part of our lives for over a month now. I know I am not ready to say good bye to him or her yet. Do not misunderstand me, I am not in denial. I am just not ready to let him or her go yet.
In the end, I know that all of this serves God's purpose. Right now I am leaning on that bit of knowledge more than anything else. I just wish His purpose did not hurt so much.
We know that God has this baby's very short life in His hands. We know that He will not put us through anything we cannot handle. We know that He knows our hearts and our minds better that we do. We also know that when His people pray, He hears it. That is why we are asking for all of you to pray. Pray for Tara and I as we are on an emotional roller coaster right now. Please pray that He surrounds all tree of us and wraps us in His love, comfort and support. Most importantly, please pray a prayer of thanks that He has called this little child home, to keep him or her safe from this world.
Tuesday, July 27, 2010
Thursday, July 22, 2010
One crazy Sunday
This past Sunday Laura and I took a day trip with my mother. We drove over to San Antonio to visit my aunt and cousin. They both have birthdays in July, so we drive over, go to lunch and celebrate their birthdays.
So we get on 410 heading south to I10. Unfortunately we were stuck in the right hand two lanes and could not get over far enough to avoid being forced to exit 410 heading toward the sporting center close to 410. It was only a minor side track so it was not big deal.
The drive to San Antonio was fairly uneventful. A little annoying, but uneventful. All of you people that get in the left hand lane and do the speed limit or less get out of way. The left lane is for passing slower moving traffic, not slowing everyone else down. We did stop at Buckee's for restroom breaks for all three of us, and to give Laura a snack. She enjoyed her orange juice and a couple of cheerios.
We planned on eating at The Alamo Cafe on 281. It is one of my favorite places in the state of Texas to get Mexican food. I really like the atmosphere. We first suspected something had gone terribly wrong when we looked over and saw Sea Island at the Forum shopping center. My mother and I looked at each other and thought "this is not right."
We promptly exited 35 at the first opportunity. Yes I know. We made the turn from 10 to 410. but we missed the turn that would have kept us on 410 heading west toward the airport and 281. So we made a u-turn under 35 and headed south. we turned right on 1604 heading west thinking it would intersect 281. After what seemed like forever we were rewarded with spotting 281. We then turned left and headed south on 281 hoping we would see the restaurant. After a quick stop to get Laura some whole milk, we managed to find The Alamo Cafe.
In addition to my aunt and cousin, my cousin's husband and my mothers best friend from high school joined us. Laura had a taco (minus the shell), tomatoes, cheese, green beans and a flower tortilla. Laura is feeding herself. She really enjoys food. She loves getting it all over herself, her chair, the floor and anyone she can fling it at. And she really appeared to enjoy this lunch. Further proof she is my daughter, she likes Mexican food.
To my knowledge this was Barbara's (my mothers friend) first time to meet Laura in person. The two of them spent a good 30 minutes playing after we finished eating.
Usually, when we make the trip to San Antonio we also go by two cemeteries where my grand parents are buried. This first picture is Laura sitting on my grandma
's lap. She did lean forward several time to touch the headstone. While we were at this cemetery Laura played with my cousin and my aunt for quiet a while. All three seemed to enjoy the activity.
's lap. She did lean forward several time to touch the headstone. While we were at this cemetery Laura played with my cousin and my aunt for quiet a while. All three seemed to enjoy the activity.Next we went to Fort Sam. Here she got to sit in my Oma and Opa's laps. While we were here we gave Laura anoth
er snack of cheerios and orange juice. Then the three of us hit the bathrooms and we started back to Houston.
er snack of cheerios and orange juice. Then the three of us hit the bathrooms and we started back to Houston.So we get on 410 heading south to I10. Unfortunately we were stuck in the right hand two lanes and could not get over far enough to avoid being forced to exit 410 heading toward the sporting center close to 410. It was only a minor side track so it was not big deal.
We eventually find our way to I10, and I turn right heading west. Yes, Houston is east of San Antonio. Yes I headed the wrong direction. So I exited I10, made another u-turn and headed east on I10. Finally headed in the right direction, what could possibly go wrong next? Famous last words.
As we are driving east we encountered slower moving traffic in the right hand lane, so when the opportunity presented itself we moved into the left hand lane to pass the slower moving cars. Then the left hand lane slowed down. The speed ups and slow downs were random and unpredictable. On many occasions we did see that the person at the front of either line was on their cell phone. This situation begs two questions. First, don't most cars on the road today have cruise control? Most of the offending vehicles were very large very expensive SUV's, and the drivers either did not understand how to use cruise control or the y could not maintain a constant speed.
The second question that gets raised is this, do you really think it is a good idea to answer your phone while traveling in a large vehicle in excess of 70 miles an hour? I realize you are trying to be safe by slowing down to 50 but wouldn't it be best if you just let the call go to voice mail? Or not make the call until your are stopped some where safe? Just some food for thought.
And the next thing we knew weather turned on us. At one point I do not think I could see more than a few feet in front of the car. The rain lasted for the better part of an hour.
Then just west of Columbus traffic ground to a halt. I am not sure why. Never really saw a reason. But this woke Laura up and she started crying. So we exited I10 and took refuge from the craziness in a McDonald's. I had a large vanilla milk shake. My mother had a large diet coke. Laura had water and yup you guessed it, more cheerios. We all used the bathrooms. and then we were off.
Traffic was at least moving, slowly. But forward progress is still progress. t
he crazy slow drivers in the passing lanes continued to be a theme through out the drive to San Antonio and back. even once I10 opened up to more than 2 lanes things only marginally improved. We got on the road to come back to Houston after 4 pm. We did not get to Voss/I10 intersection until nearly 8:30.
But as this last picture shows, I may have a different and much bigger problem on my hands since Laura was in the car for so long. Oh dear.
As we are driving east we encountered slower moving traffic in the right hand lane, so when the opportunity presented itself we moved into the left hand lane to pass the slower moving cars. Then the left hand lane slowed down. The speed ups and slow downs were random and unpredictable. On many occasions we did see that the person at the front of either line was on their cell phone. This situation begs two questions. First, don't most cars on the road today have cruise control? Most of the offending vehicles were very large very expensive SUV's, and the drivers either did not understand how to use cruise control or the y could not maintain a constant speed.
The second question that gets raised is this, do you really think it is a good idea to answer your phone while traveling in a large vehicle in excess of 70 miles an hour? I realize you are trying to be safe by slowing down to 50 but wouldn't it be best if you just let the call go to voice mail? Or not make the call until your are stopped some where safe? Just some food for thought.
And the next thing we knew weather turned on us. At one point I do not think I could see more than a few feet in front of the car. The rain lasted for the better part of an hour.
Then just west of Columbus traffic ground to a halt. I am not sure why. Never really saw a reason. But this woke Laura up and she started crying. So we exited I10 and took refuge from the craziness in a McDonald's. I had a large vanilla milk shake. My mother had a large diet coke. Laura had water and yup you guessed it, more cheerios. We all used the bathrooms. and then we were off.
Traffic was at least moving, slowly. But forward progress is still progress. t
he crazy slow drivers in the passing lanes continued to be a theme through out the drive to San Antonio and back. even once I10 opened up to more than 2 lanes things only marginally improved. We got on the road to come back to Houston after 4 pm. We did not get to Voss/I10 intersection until nearly 8:30.But as this last picture shows, I may have a different and much bigger problem on my hands since Laura was in the car for so long. Oh dear.
Thursday, July 8, 2010
Rain Rain everywhere
Well, for the better part of the last 4 weeks we have been getting rained on here in Houston. It seems like forever since I have seen two days go by without any rain. It really sucks. But, that is the price of living in a city that used to be a swamp.
The good news, it did not rain on the Fourth of July or fathers day. That means Laura got to go swimming both days. Now the fourth of July swimming was really cold. It had been raining for three weeks at that point. But she still splashed and floated around quiet happily for a couple of hours.
But still, I am starting to feel like we are all walking around in a permanent pruney state from all of the water. The rain sure beats the heat and humidity that we normally get.
Through all of it, Laura is just as happy as she always is. As long as someone plays with her is paying attention to her, she does not care what is going on with the rest of the world.
That is not entirely true. Laura has a new teacher at school. She does not know the teacher yet so she gets clingy and cries when mommy drops her off each morning. We know this is just a stage she is going through, but it is still tough to walk away from our crying daughter.
We meet with the lady that will be Laura's new teacher at The Rise School next week. The meeting should be about an hour. I think it is mostly to discuss where Laura is currently at, and what we would like for her to accomplish in the next year.
We are having a hard time with this. We know The Rise School is the best place for Laura, but she will not be right down the hall from Tara anymore. We cannot just pop in and see her when we want to. This is going to be rough. But, this is what is best for Laura. And that is what we want. I am not looking forward to this.
Overall, Laura's therapist's think she is doing well. She is still not crawling, but at this point it is by her choice. She can easily hold herself up on all fours and rock (she is really quite good at it). She is getting to the point where she can stand without you having to be ready to catch her. She can hold herself up. Her therapists do want her to crawl before she walks. I am not sure if Laura agrees with this. Time will tell.
The Down Syndrome Association of Houston (http://www.dsah.org/) has scheduled their Buddy Walk for this year. It will be Saturday November 6th at Jones plaza. Laura will once again have a team. Her team is Laura's Lions. The walk is free for anyone and everyone who wants to come out, just register first so there is a record of who came out. We look forward to seeing you there. Here is hoping we can raise a ton of money for at free event.
The good news, it did not rain on the Fourth of July or fathers day. That means Laura got to go swimming both days. Now the fourth of July swimming was really cold. It had been raining for three weeks at that point. But she still splashed and floated around quiet happily for a couple of hours.
But still, I am starting to feel like we are all walking around in a permanent pruney state from all of the water. The rain sure beats the heat and humidity that we normally get.
Through all of it, Laura is just as happy as she always is. As long as someone plays with her is paying attention to her, she does not care what is going on with the rest of the world.
That is not entirely true. Laura has a new teacher at school. She does not know the teacher yet so she gets clingy and cries when mommy drops her off each morning. We know this is just a stage she is going through, but it is still tough to walk away from our crying daughter.
We meet with the lady that will be Laura's new teacher at The Rise School next week. The meeting should be about an hour. I think it is mostly to discuss where Laura is currently at, and what we would like for her to accomplish in the next year.
We are having a hard time with this. We know The Rise School is the best place for Laura, but she will not be right down the hall from Tara anymore. We cannot just pop in and see her when we want to. This is going to be rough. But, this is what is best for Laura. And that is what we want. I am not looking forward to this.
Overall, Laura's therapist's think she is doing well. She is still not crawling, but at this point it is by her choice. She can easily hold herself up on all fours and rock (she is really quite good at it). She is getting to the point where she can stand without you having to be ready to catch her. She can hold herself up. Her therapists do want her to crawl before she walks. I am not sure if Laura agrees with this. Time will tell.
The Down Syndrome Association of Houston (http://www.dsah.org/) has scheduled their Buddy Walk for this year. It will be Saturday November 6th at Jones plaza. Laura will once again have a team. Her team is Laura's Lions. The walk is free for anyone and everyone who wants to come out, just register first so there is a record of who came out. We look forward to seeing you there. Here is hoping we can raise a ton of money for at free event.
Tuesday, June 29, 2010
What a Month
It seems like this month has been nonstop.
Laura has been the girl on the go. She was accepted to The Rise School. This is an amazing program for kids with Down Syndrome. The program was started at the University of Alabama. The goal of the school, in Houston, is to equip children with Down Syndrome to be able to be mainstreamed through the public school system. The school in Houston also accepts nonDown's kids (usually siblings) as a way to help spread awareness and acceptance of people with Down Syndrome. I would highly recommend that you sign your child up as soon as you can, if there is a school in your area. Just check The Rise School web site to see if there is one close to you.
Most importantly, Laura turned one year old this month. She is fortunate, in that she got to have 2 parties. Her first one was a pool party at G.E.O. and G.C.'s house. She loves to swim, and had a blast playing in the pool with the other kids (from her class at school plus a couple of other Down's babies at Second). She had a black out cupcake that she got to smear all over herself. I believe a new chocolate addiction was born. The most fun part of the party was when she was done unwrapping all of her presents, she just played and played with the tissue paper. She had us all laughing. That in turn got her laughing, and playing more. That had us laughing even more. You can see where this is going. She slept hard that night.
Her second party was at school. Here she really made a mess of herself. She had icing all over her and everything she could get her hands on. She looks so very pleased with herself. She got Tara good with her icing covered hands.
We just fond out what we will have to pay to have Laura enrolled in The Rise School. It is much less than what we have to pay to have her at Second with Tara. It is still steep for us, but God has provided so much already. We are placing our faith in Him that the money will come from somewhere. Fortunately, we are blessed with a family that completely loves our daughter, and want the best for her. Between us all we should be able to figure something out.
She has had a virus the last few days. I stayed home with her yesterday and we had a blast. We played with some of her new toys, that she got for her birthday. She loves the music table that her Granny gave her. She sat in her chair (G.C. & G.E.O. gave her that one) and we read a story. She is a good reader, and is adamant about helping turn the page.
Tara and I think she may have sung her first song the other day. She has been stringing various one syllable sounds together for a while to form "sentences". Well the other day her sentence had several variations in the tone. This was a first. We have known for a while that she likes music, but to hear her do this was just to cool. We got all excited. Unfortunately, we could not get her to do it again. It is becoming more and more clear that we have an artist on our hands.
Now, I really am not sure what to do. Laura is my daughter. I do not know how to raise a daughter. Not the foggiest clue. I tend to follow Tara's lead. She knows more about girls than I do. Additionally, Laura may have an artistic bent? How do I raise and encourage and artist. Man I am glad I am married to Tara.
The Down Syndrome Association of Houston (DSAH) has scheduled this years Buddy Walk. It will be on November 6th at 1:00 pm. The walk is free this year to anyone who wants to come on out. Laura's Lions team should be signed up by the end of the day. This event is designed to help raise awareness for Down Syndrome in the greater Houston area. The funds raised directly sponsor all the classes, seminars, various events and the community outreach programs that DSAH does through out the year. Basically the money raised by this event goes right back into our community. So please give early and give often.
I normally hate commercials. You can ask Tara, they are probably as close as I will get to something being able to be described as "The Bane of my Existence". I will do anything to get out of having to watch one. So the other day I saw one that actually caught my attention. It was a Pepsi Refresh commercial for a group called the The Sparkle Effect. This is a group that helps schools create inclusion of all students through cheer leading teams. The girls, and the featured team, were just incredible. All I can say is that Pepsi got something right. I can only hope that the public schools Laura attends have kids like these girls in them.
Laura has been the girl on the go. She was accepted to The Rise School. This is an amazing program for kids with Down Syndrome. The program was started at the University of Alabama. The goal of the school, in Houston, is to equip children with Down Syndrome to be able to be mainstreamed through the public school system. The school in Houston also accepts nonDown's kids (usually siblings) as a way to help spread awareness and acceptance of people with Down Syndrome. I would highly recommend that you sign your child up as soon as you can, if there is a school in your area. Just check The Rise School web site to see if there is one close to you.
Most importantly, Laura turned one year old this month. She is fortunate, in that she got to have 2 parties. Her first one was a pool party at G.E.O. and G.C.'s house. She loves to swim, and had a blast playing in the pool with the other kids (from her class at school plus a couple of other Down's babies at Second). She had a black out cupcake that she got to smear all over herself. I believe a new chocolate addiction was born. The most fun part of the party was when she was done unwrapping all of her presents, she just played and played with the tissue paper. She had us all laughing. That in turn got her laughing, and playing more. That had us laughing even more. You can see where this is going. She slept hard that night.
Her second party was at school. Here she really made a mess of herself. She had icing all over her and everything she could get her hands on. She looks so very pleased with herself. She got Tara good with her icing covered hands.
We just fond out what we will have to pay to have Laura enrolled in The Rise School. It is much less than what we have to pay to have her at Second with Tara. It is still steep for us, but God has provided so much already. We are placing our faith in Him that the money will come from somewhere. Fortunately, we are blessed with a family that completely loves our daughter, and want the best for her. Between us all we should be able to figure something out.
She has had a virus the last few days. I stayed home with her yesterday and we had a blast. We played with some of her new toys, that she got for her birthday. She loves the music table that her Granny gave her. She sat in her chair (G.C. & G.E.O. gave her that one) and we read a story. She is a good reader, and is adamant about helping turn the page.
Tara and I think she may have sung her first song the other day. She has been stringing various one syllable sounds together for a while to form "sentences". Well the other day her sentence had several variations in the tone. This was a first. We have known for a while that she likes music, but to hear her do this was just to cool. We got all excited. Unfortunately, we could not get her to do it again. It is becoming more and more clear that we have an artist on our hands.
Now, I really am not sure what to do. Laura is my daughter. I do not know how to raise a daughter. Not the foggiest clue. I tend to follow Tara's lead. She knows more about girls than I do. Additionally, Laura may have an artistic bent? How do I raise and encourage and artist. Man I am glad I am married to Tara.
The Down Syndrome Association of Houston (DSAH) has scheduled this years Buddy Walk. It will be on November 6th at 1:00 pm. The walk is free this year to anyone who wants to come on out. Laura's Lions team should be signed up by the end of the day. This event is designed to help raise awareness for Down Syndrome in the greater Houston area. The funds raised directly sponsor all the classes, seminars, various events and the community outreach programs that DSAH does through out the year. Basically the money raised by this event goes right back into our community. So please give early and give often.
I normally hate commercials. You can ask Tara, they are probably as close as I will get to something being able to be described as "The Bane of my Existence". I will do anything to get out of having to watch one. So the other day I saw one that actually caught my attention. It was a Pepsi Refresh commercial for a group called the The Sparkle Effect. This is a group that helps schools create inclusion of all students through cheer leading teams. The girls, and the featured team, were just incredible. All I can say is that Pepsi got something right. I can only hope that the public schools Laura attends have kids like these girls in them.
Friday, June 4, 2010
YOU GO GIRL!!!
What an amazing couple of days it has been. The last two days I have gotten to grill. That is always something fun for me. Steaks and chicken. Both are very good. Today I am off of work. Always nice to have some time at home.
Laura is home with me today. Her being here makes the day perfect. So far we have eaten breakfast. We have played with her toys, she is a very good toy player wither. As I am typing we are listening to classical music (Mozart, Bach, etc.). And just a little bit ago she received her very first 1st birthday present.
Last night, when Tara, Laura and I got home we had a message waiting on our answering machine. It was from the director of the Rise School. She asked us to call her back. I called this morning, and had to leave a voice mail. The director called me back about 9:40 am. We talked for a few minutes then hung up. The call was to let us know that Laura has been accepted into the Rise School.
Some people may be asking, what is The Rise School? It is a private school that is focused on helping babies and children with Down Syndrome become everything that they were designed to be. It is a program that was started at the University of Alabama (sorry G.C., Grandma Coleen, but some good things do come out of that university). The school here in Houston is administered through Texas Children's Hospital. She will likely be there until she is ready to start elementary school, which will be around age 6 or 7 The goal of the Rise School here in Houston is to equip these incredible kids with everything they need to be mainstreamed through the public school systems in and around Houston.
When I got off of the phone with the director I was so excited I was shaking. When I called Tara, she said her hands were sweating. Laura's grandparents sounded like they were just short of flying high themselves. This is an amazing opportunity for Laura and we cannot wait for her to get started.
YOU GO GIRL!!!!!!
Laura is home with me today. Her being here makes the day perfect. So far we have eaten breakfast. We have played with her toys, she is a very good toy player wither. As I am typing we are listening to classical music (Mozart, Bach, etc.). And just a little bit ago she received her very first 1st birthday present.
Last night, when Tara, Laura and I got home we had a message waiting on our answering machine. It was from the director of the Rise School. She asked us to call her back. I called this morning, and had to leave a voice mail. The director called me back about 9:40 am. We talked for a few minutes then hung up. The call was to let us know that Laura has been accepted into the Rise School.
Some people may be asking, what is The Rise School? It is a private school that is focused on helping babies and children with Down Syndrome become everything that they were designed to be. It is a program that was started at the University of Alabama (sorry G.C., Grandma Coleen, but some good things do come out of that university). The school here in Houston is administered through Texas Children's Hospital. She will likely be there until she is ready to start elementary school, which will be around age 6 or 7 The goal of the Rise School here in Houston is to equip these incredible kids with everything they need to be mainstreamed through the public school systems in and around Houston.
When I got off of the phone with the director I was so excited I was shaking. When I called Tara, she said her hands were sweating. Laura's grandparents sounded like they were just short of flying high themselves. This is an amazing opportunity for Laura and we cannot wait for her to get started.
YOU GO GIRL!!!!!!
Wednesday, June 2, 2010
Where are the loop holes?
Life has been interesting the last month or so. As many of you know, I work at R.E.I. We just had our annual Anniversary Sale. I was in charge of it for our store. So between prepping for training new hires for R.E.I.'s new store in Tucson (which is doing incredible) at the beginning of May, working on Anniversary Sale, all of Laura's accomplishments, Laura's Parent Child Commitment at Second Baptist, Mother's day (a huge success according to Tara, thank God), and at least one hundred other appointments that I cannot remember at this point, it is easy to say I am glad May is over. The words worn out do not even begin to describe how Tara and I are feeling.
For the record, Laura gave Tara a photo album that had twelve photo's in it of Tara and Laura. One from each month of Laura's young life. Laura has promised to update the album every year with twelve more photo's. Laura also gave her grandmothers a framed picture of her and her hand prints. Laura really enjoyed making these, as she got to get paint on everything. Each of her grandmothers teared up. Laura has great ideas for gifts. I wish Tara and I were that creative.
June and July look to be much more simple months right now. In June we have Laura's 1st birthday. I cannot believe she is turning a year old already. It seems like she was only born two days ago. It seems like her heart surgery was yesterday. Now she is just about ready to start crawling and walking. She is starting to get interested in feeding herself. She has been swimming for the first time, and looked like she loved it (there is a video of it on my facebook page). We all had fun with her swimming. We cannot wait for her birthday so we can get in the pool again.
We also have Father's Day in June. It will be hard for Tara to top last year's Father's Day. You see Laura was born before Father's day but after Mother's day. A fact that I choose inappropriate times to remind Tara. And if I happen to point out that it means that Laura loves me more, well so much the better. I am just looking forward to spending some time with my girls. Tara knows this, and knows that is all I want. G.E.O. (Laura's Grandfather, do not ask him what it means, you are just going to inflate his ego) may have other plans, but Laura has an appropriate gift planned for him already. She even thinks ahead. Tara and I are glad she is blessed with skills we do not pocess.
At work, my promotion starts this month. I am looking forward to rolling up my sleeves, and getting elbows deep into my new responsibilities as the new Market Sales & Product Expert for Houston. For those who do not know, this means I am in charge of all trainings for R.E.I. in the greater Houston area. Mike, Brad and I have some big plans, and I cannot wait to get started on making them happen.
In July we are planning a day trip to San Antonio to visit some family. Mr. Green "I promise" to let you know the date. It will likely be a Sunday. In August, the Birthday carousel starts again. I think I am going to enjoy a relatively quiet June and July. I need it after the whirlwind that was May.
Now for a short gripe. How is it that people that make hundreds of thousands, if not millions, of dollars a year can get their disabled kids on Medicaid and SSI, but people who actually need these programs get told they make to much money to qualify? I do not understand this. Unfortunately I cannot blame the current administration for this, as it has been going on for a lot longer than the last 10 to 20 years.
I bring this up because a friend of mine just got the word that he makes to much money to qualify for Medicaid and SSI. He has three boys. His two youngest are newborn twins (one of whom I believe is still in the hospital) with Down Syndrome. His wife is a stay at home mom. Yet, like Tara and I, he did not qualify. He makes to much money. I do not get it! Can someone please explain to me what we did wrong? Surgeons who make millions qualify, but those of us who struggle to make ends meat, make to much money. Does this make sense to anyone?
Where are the loop holes?
For the record, Laura gave Tara a photo album that had twelve photo's in it of Tara and Laura. One from each month of Laura's young life. Laura has promised to update the album every year with twelve more photo's. Laura also gave her grandmothers a framed picture of her and her hand prints. Laura really enjoyed making these, as she got to get paint on everything. Each of her grandmothers teared up. Laura has great ideas for gifts. I wish Tara and I were that creative.
June and July look to be much more simple months right now. In June we have Laura's 1st birthday. I cannot believe she is turning a year old already. It seems like she was only born two days ago. It seems like her heart surgery was yesterday. Now she is just about ready to start crawling and walking. She is starting to get interested in feeding herself. She has been swimming for the first time, and looked like she loved it (there is a video of it on my facebook page). We all had fun with her swimming. We cannot wait for her birthday so we can get in the pool again.
We also have Father's Day in June. It will be hard for Tara to top last year's Father's Day. You see Laura was born before Father's day but after Mother's day. A fact that I choose inappropriate times to remind Tara. And if I happen to point out that it means that Laura loves me more, well so much the better. I am just looking forward to spending some time with my girls. Tara knows this, and knows that is all I want. G.E.O. (Laura's Grandfather, do not ask him what it means, you are just going to inflate his ego) may have other plans, but Laura has an appropriate gift planned for him already. She even thinks ahead. Tara and I are glad she is blessed with skills we do not pocess.
At work, my promotion starts this month. I am looking forward to rolling up my sleeves, and getting elbows deep into my new responsibilities as the new Market Sales & Product Expert for Houston. For those who do not know, this means I am in charge of all trainings for R.E.I. in the greater Houston area. Mike, Brad and I have some big plans, and I cannot wait to get started on making them happen.
In July we are planning a day trip to San Antonio to visit some family. Mr. Green "I promise" to let you know the date. It will likely be a Sunday. In August, the Birthday carousel starts again. I think I am going to enjoy a relatively quiet June and July. I need it after the whirlwind that was May.
Now for a short gripe. How is it that people that make hundreds of thousands, if not millions, of dollars a year can get their disabled kids on Medicaid and SSI, but people who actually need these programs get told they make to much money to qualify? I do not understand this. Unfortunately I cannot blame the current administration for this, as it has been going on for a lot longer than the last 10 to 20 years.
I bring this up because a friend of mine just got the word that he makes to much money to qualify for Medicaid and SSI. He has three boys. His two youngest are newborn twins (one of whom I believe is still in the hospital) with Down Syndrome. His wife is a stay at home mom. Yet, like Tara and I, he did not qualify. He makes to much money. I do not get it! Can someone please explain to me what we did wrong? Surgeons who make millions qualify, but those of us who struggle to make ends meat, make to much money. Does this make sense to anyone?
Where are the loop holes?
Tuesday, May 25, 2010
First's
Laura has had a busy week this week, and it is only Tuesday.
Yesterday (Monday 5-24-10) Laura decided it was time she helped to feed herself. This is something that Tara and Laura have been working on for some time. The closest Laura has gotten to accomplishing this goal, was to be able to grab her bowls, bang them briefly then toss them on the floor. A big mess is sometimes made (if there was food in them), and big laugh is had by Laura and whoever saw her do it (this makes me wonder if she has my diabolical streak), then we clean up and try again.
Yesterday, at her snack time, she purposefully reached forward and pulled her snack to her mouth and began chewing. She was working on two different items. The first one is a little cloth like baggy that you put chucks of fruit in to. The purpose of this device is to teach children to chew. The theory is that the child bites down on the fruit filled bag and some of the juice from the fruit comes out. To me it sounds kind of weird, but it is actually kind of cool. Laura was able to pick her fruit baggy up several times, and get it to her mouth to chew on. She did this with little help and allot of encouragement from Tara. She even worked on transferring the bag from one hand to the other.
Laura also took a rice cracker from Tara's had and chewed on it. In the past, the closest Laura had gotten to something like this would involve her grabbing one of our hands that had some of her food in it, and she would then pull that hand to her and we would have to guide the food into her mouth. However, yesterday she took the cracker from Tara's hand and chewed on it several times. I am hoping to have a video of this posted on my FaceBook page later today.
Beyond the chewing, she is getting better at standing. And, she happily drinks her bottle through a straw. We are still sometime away from her drinking out of a cup, but we are getting closer. She can hold a cup or glass all by herself though. I know these may only seem like little things to some people, but to us they are huge, and we are very excited.
Yesterday (Monday 5-24-10) Laura decided it was time she helped to feed herself. This is something that Tara and Laura have been working on for some time. The closest Laura has gotten to accomplishing this goal, was to be able to grab her bowls, bang them briefly then toss them on the floor. A big mess is sometimes made (if there was food in them), and big laugh is had by Laura and whoever saw her do it (this makes me wonder if she has my diabolical streak), then we clean up and try again.
Yesterday, at her snack time, she purposefully reached forward and pulled her snack to her mouth and began chewing. She was working on two different items. The first one is a little cloth like baggy that you put chucks of fruit in to. The purpose of this device is to teach children to chew. The theory is that the child bites down on the fruit filled bag and some of the juice from the fruit comes out. To me it sounds kind of weird, but it is actually kind of cool. Laura was able to pick her fruit baggy up several times, and get it to her mouth to chew on. She did this with little help and allot of encouragement from Tara. She even worked on transferring the bag from one hand to the other.
Laura also took a rice cracker from Tara's had and chewed on it. In the past, the closest Laura had gotten to something like this would involve her grabbing one of our hands that had some of her food in it, and she would then pull that hand to her and we would have to guide the food into her mouth. However, yesterday she took the cracker from Tara's hand and chewed on it several times. I am hoping to have a video of this posted on my FaceBook page later today.
Beyond the chewing, she is getting better at standing. And, she happily drinks her bottle through a straw. We are still sometime away from her drinking out of a cup, but we are getting closer. She can hold a cup or glass all by herself though. I know these may only seem like little things to some people, but to us they are huge, and we are very excited.
Tuesday, May 18, 2010
Thoughts from the "other side"
I have been a little down lately. Sometimes my thoughts focus on some of the opportunities that Laura might miss out on, because she has Down Syndrome.
For instance, will she go to college? I know of several adults with Down Syndrome that have attended and graduated from various colleges and universities around the country. Recent national legislation has certainly made it a little easier for people with special needs of all ages to get a post secondary education. This legislation is a critical first step. Now public universities need to step up and use it.
But it does not answer the question, will Laura go to college? Tara and I certainly want her to. We are trying to plan for her, and any other children that we may have, to go to college. Do not read anything into that statement. To our knowledge, neither one of us is pregnant. Our parents, Laura's grandparents, certainly want Laura to go to college. But will she go? Will she be able to function at a level where college is a viable option for her? We are certainly trying to do everything we can to ensure she is equipped to go. But will she?
Will Laura get married? Will Tara and I stand in the bridal sweet watching as Laura and her friends finish getting ready? Will I be praying as I walk her down the aisle "Please God, do not let me trip and ruin Laura's moment?"
Will she get to have kids of her own to care for, and love, and be loved by?
Will she need someone to watch over her and care for her, her entire life? This is a question I struggle with daily.
All of this brings one question to my mind. How severe will Laura's Down Syndrome be? Yes there are various levels of Down Syndrome. The answer right now is, we do not know. And that is what is most maddening about all of this. I hate not knowing. It drives me crazy.
When my mind wonders down this road, this "other side", it makes me sad. I try not to go there very often. But, sometimes I just cannot seem to help it. And it is ok to go down this road sometimes. It is part of being a parent in general, and being a parent of a special needs child in particular. Every parent does it from time to time.
Those who say they never get down about their child's potentially very different future, are in denial about their state of mourning. Mourning the perceived loss of a child's future is normal. There is nothing wrong with someone who experiences a mourning like state for a time when they find out their child will have special needs.
I have met a few parents that are in such deep denial about their state, that they are actually angry that their children are not "normal". They are not angry with their children, but rather they are angry that their child will be different. This is a mentality that I do not understand.
Every person is a unique creation. Every individual is special, and different from every other individual. So why are some parents so upset that their child is different? Their child is different, just like every other child out there. I understand for some people, that it can be hard to accept that their child will not be "normal", whatever that means.
But in reality these kids, or people, are no different than anyone else. Just like everyone else, they do things at their own pace, and in their own time.
For instance, Laura. I wrote a week or two ago that she has shown little interest in learning to crawl. However, she is very interested in learning to stand. She has no interest in learning to drink from a sippy cup. But, if you put a glass in front of her, she cannot get to it fast enough to take a drink. Which if she is allowed to do so by herself, the glasses contents usually wind up all over everything (she is only 11 months old after all). Learning things in her own way, and in her own time.
The only trick is not to get stuck in this "other side". I try to focus on this amazing gift that God has bestowed upon Tara and I. Laura has already had an impact on so many people, and she is not even a year old. In truth, I cannot wait to discover what other wonders are in store for her as we move forward.
For instance, will she go to college? I know of several adults with Down Syndrome that have attended and graduated from various colleges and universities around the country. Recent national legislation has certainly made it a little easier for people with special needs of all ages to get a post secondary education. This legislation is a critical first step. Now public universities need to step up and use it.
But it does not answer the question, will Laura go to college? Tara and I certainly want her to. We are trying to plan for her, and any other children that we may have, to go to college. Do not read anything into that statement. To our knowledge, neither one of us is pregnant. Our parents, Laura's grandparents, certainly want Laura to go to college. But will she go? Will she be able to function at a level where college is a viable option for her? We are certainly trying to do everything we can to ensure she is equipped to go. But will she?
Will Laura get married? Will Tara and I stand in the bridal sweet watching as Laura and her friends finish getting ready? Will I be praying as I walk her down the aisle "Please God, do not let me trip and ruin Laura's moment?"
Will she get to have kids of her own to care for, and love, and be loved by?
Will she need someone to watch over her and care for her, her entire life? This is a question I struggle with daily.
All of this brings one question to my mind. How severe will Laura's Down Syndrome be? Yes there are various levels of Down Syndrome. The answer right now is, we do not know. And that is what is most maddening about all of this. I hate not knowing. It drives me crazy.
When my mind wonders down this road, this "other side", it makes me sad. I try not to go there very often. But, sometimes I just cannot seem to help it. And it is ok to go down this road sometimes. It is part of being a parent in general, and being a parent of a special needs child in particular. Every parent does it from time to time.
Those who say they never get down about their child's potentially very different future, are in denial about their state of mourning. Mourning the perceived loss of a child's future is normal. There is nothing wrong with someone who experiences a mourning like state for a time when they find out their child will have special needs.
I have met a few parents that are in such deep denial about their state, that they are actually angry that their children are not "normal". They are not angry with their children, but rather they are angry that their child will be different. This is a mentality that I do not understand.
Every person is a unique creation. Every individual is special, and different from every other individual. So why are some parents so upset that their child is different? Their child is different, just like every other child out there. I understand for some people, that it can be hard to accept that their child will not be "normal", whatever that means.
But in reality these kids, or people, are no different than anyone else. Just like everyone else, they do things at their own pace, and in their own time.
For instance, Laura. I wrote a week or two ago that she has shown little interest in learning to crawl. However, she is very interested in learning to stand. She has no interest in learning to drink from a sippy cup. But, if you put a glass in front of her, she cannot get to it fast enough to take a drink. Which if she is allowed to do so by herself, the glasses contents usually wind up all over everything (she is only 11 months old after all). Learning things in her own way, and in her own time.
The only trick is not to get stuck in this "other side". I try to focus on this amazing gift that God has bestowed upon Tara and I. Laura has already had an impact on so many people, and she is not even a year old. In truth, I cannot wait to discover what other wonders are in store for her as we move forward.
Wednesday, May 12, 2010
Mother's Day and Facebook
I know it seems weird to be mentioning Facebook on this blog, but I am continually amazed at the community on facebook. The community on facebook is incredibly supportive. I daily see comments of concern, support and encouragement. Questions are routinely asked and answered in a loving, caring and respectful way.
I follow two particular pages. They are the National Down Syndrome Society and Down Syndrome Blogs. The Down Syndrome Blogs are driven by the community itself. Many people there are very happy to talk about their experiences with Down Syndrome, give advise or just provide whatever support you might need. You can also find local Down Syndrome activities posted there.
The National Down Syndrome Society's page on Facebook is just that, it is the National Down Syndrome Society's presence on Facebook. It is a great place to get the latest information on what is going on in the Down's world.
Mother's Day went wonderfully. Tara loved her gift from Laura. Tara continues to flip through it everyday. Laura is already a great gift giver. She must get that from someone else.
I follow two particular pages. They are the National Down Syndrome Society and Down Syndrome Blogs. The Down Syndrome Blogs are driven by the community itself. Many people there are very happy to talk about their experiences with Down Syndrome, give advise or just provide whatever support you might need. You can also find local Down Syndrome activities posted there.
The National Down Syndrome Society's page on Facebook is just that, it is the National Down Syndrome Society's presence on Facebook. It is a great place to get the latest information on what is going on in the Down's world.
Mother's Day went wonderfully. Tara loved her gift from Laura. Tara continues to flip through it everyday. Laura is already a great gift giver. She must get that from someone else.
Monday, May 3, 2010
Tucson is lonely
As some of you know I am in Tucson to help train the new staff for the new store REI is opening. Tucson is a new market for us. It is a beautiful city. The thing I love most about it is the fact that a high humidity day is humidity in the low thirties. Gotta love that.
However, I am in Tucson. Tara and Laura are at home in Houston. I miss them terribly. I new that would be the case, but still I am lonely.
Laura is laughing more and more with each passing day. She is starting to learn to drink from a real cup and not a bottle. For the record, she does not like sippy cups. I am glad. She is beginning to work on the precrawling activities. I am hoping that she is only a month or two away from being mobile.
Now here is the thing I think is funny. She is more interested in standing than crawling. I think this is too cool.
We had a meeting at the Down Syndrome clinic at Texas Children's last week. It went well. Over all they were very pleased and excited about where Laura is and how she was doing. They quickly discovered Laura is people person. They had some exercises they want ed Laura to do that required her to interact with various objects and toys that they had. The munchkin had no interest in the toys. She just wanted to get to know the new people. From our perspective, it was par fro the course. They doctor and 2 therapists were really amazed at how engaging and charming she is. I told them she gets that from her mother.
They did say they wanted us to start some physical therapy in addition to our occupational therapy. Yes you read that correctly it. It is my plan for Laura to get a job and start pulling her own weight. She has been mooching of of Tara and I way to long! They even recommended that We start putting Laura in to high top shoes to help her support her feet and ankles as she starts to stand and walk. This is a concern because people with Down's tend to have low muscle tone, which Laura has been working hard to over come. That has been what the occupational therapy has been for.
This was bitter sweet for me. I have been adamant about her not wearing shoes until she starts to walk. Now I have to give in because the doctor said that the high top style will help her. That is the bitter part. The sweet part is that I work for an outdoor retailer and she is going to get hiking boots as her first regular pair of shoes!!! And the hairy legged mountain woman trend continues. Anyone who is curious about that comment, ask Tara.
We went through Second's parent child commitment ceremony a couple of weeks ago. All of Laura's grandparents were in attendance, including her great grandmother. The startled look on Ben Young's face was hilarious when he saw Tara, Laura and I standing there. He actually played with Laura for a moment before he moved on to the next couple. To me that was to cool, because I had never seen any of our pastors do that before.
I will be home in a couple of days, and I cannot wait to see Tara and Laura.
However, I am in Tucson. Tara and Laura are at home in Houston. I miss them terribly. I new that would be the case, but still I am lonely.
Laura is laughing more and more with each passing day. She is starting to learn to drink from a real cup and not a bottle. For the record, she does not like sippy cups. I am glad. She is beginning to work on the precrawling activities. I am hoping that she is only a month or two away from being mobile.
Now here is the thing I think is funny. She is more interested in standing than crawling. I think this is too cool.
We had a meeting at the Down Syndrome clinic at Texas Children's last week. It went well. Over all they were very pleased and excited about where Laura is and how she was doing. They quickly discovered Laura is people person. They had some exercises they want ed Laura to do that required her to interact with various objects and toys that they had. The munchkin had no interest in the toys. She just wanted to get to know the new people. From our perspective, it was par fro the course. They doctor and 2 therapists were really amazed at how engaging and charming she is. I told them she gets that from her mother.
They did say they wanted us to start some physical therapy in addition to our occupational therapy. Yes you read that correctly it. It is my plan for Laura to get a job and start pulling her own weight. She has been mooching of of Tara and I way to long! They even recommended that We start putting Laura in to high top shoes to help her support her feet and ankles as she starts to stand and walk. This is a concern because people with Down's tend to have low muscle tone, which Laura has been working hard to over come. That has been what the occupational therapy has been for.
This was bitter sweet for me. I have been adamant about her not wearing shoes until she starts to walk. Now I have to give in because the doctor said that the high top style will help her. That is the bitter part. The sweet part is that I work for an outdoor retailer and she is going to get hiking boots as her first regular pair of shoes!!! And the hairy legged mountain woman trend continues. Anyone who is curious about that comment, ask Tara.
We went through Second's parent child commitment ceremony a couple of weeks ago. All of Laura's grandparents were in attendance, including her great grandmother. The startled look on Ben Young's face was hilarious when he saw Tara, Laura and I standing there. He actually played with Laura for a moment before he moved on to the next couple. To me that was to cool, because I had never seen any of our pastors do that before.
I will be home in a couple of days, and I cannot wait to see Tara and Laura.
Wednesday, April 21, 2010
The Creed of Babies with Down Syndrome
My face might be different
But my feelings are the same
I laugh and I cry... See More
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do as you do
But at my own pace.
Author Unknown
But my feelings are the same
I laugh and I cry... See More
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do as you do
But at my own pace.
Author Unknown
Monday, April 19, 2010
Dancing Days Are Here Again
Never miss an opportunity to quote a Led Zepplin song.
As some of you know, Tara nad Laura were in Fort Worth for the wedding of one of our friends from college. I stayed home, because I had to work both Friday and Saturday. This weekend was something that I had been looking forward to since we had first found out about the wedding. An entire weekend all to myself. I had missed alone time very much.
I was an only child, and I loved it. One thing about being an only child is that you get used to the idea of time alone. That is just the way it is when you have working parents. I do not regret it. I had planty of friends to run around with. Some of the trouble we got into my parent sitll do not know about (thank goodness). When I was alone, I still kept myself busy. Plenty of books to read, tv to watch, home work to be done (not that I did much of it) and my imagination to get lost in.
When Tara and I got married that all changed. She tells me for the better, and I believe her. But part of me still likes a little alone time now and then. It can be hard to come by when your married. Tara has always been very understanding and tried to give me some time to myself when she can. And for that I am grateful.
Then, last year God blessed us with Laura. With everything we went through with her last year, that alone time got harder and harder to come by. The strange thing is that I found that I did not miss it as much. Here was this semi gelatinous, alien like creature, that is just now figuring out how to become mobile and I can not get enough of her.
In my current job at R.E.I., I usually get one day off during the week. Tara always asks if I want to keep Laura with me. Sometimes I say yes. Lately I have been sending Laura to school on my day off so I can get some rest. Retail sales wears me out. So this weekend I was going to get an entire weekend to myself, outside of work and church. Boy was I looking forward to it.
So after all of this what did I spend my free time this weekend doing? Missing my wife and daughter. Wishing I had gone with them (and I hate weddings). Now they are home and I am much more happy. Weird how things can change and you can be very happy about it.
As some of you know, Tara nad Laura were in Fort Worth for the wedding of one of our friends from college. I stayed home, because I had to work both Friday and Saturday. This weekend was something that I had been looking forward to since we had first found out about the wedding. An entire weekend all to myself. I had missed alone time very much.
I was an only child, and I loved it. One thing about being an only child is that you get used to the idea of time alone. That is just the way it is when you have working parents. I do not regret it. I had planty of friends to run around with. Some of the trouble we got into my parent sitll do not know about (thank goodness). When I was alone, I still kept myself busy. Plenty of books to read, tv to watch, home work to be done (not that I did much of it) and my imagination to get lost in.
When Tara and I got married that all changed. She tells me for the better, and I believe her. But part of me still likes a little alone time now and then. It can be hard to come by when your married. Tara has always been very understanding and tried to give me some time to myself when she can. And for that I am grateful.
Then, last year God blessed us with Laura. With everything we went through with her last year, that alone time got harder and harder to come by. The strange thing is that I found that I did not miss it as much. Here was this semi gelatinous, alien like creature, that is just now figuring out how to become mobile and I can not get enough of her.
In my current job at R.E.I., I usually get one day off during the week. Tara always asks if I want to keep Laura with me. Sometimes I say yes. Lately I have been sending Laura to school on my day off so I can get some rest. Retail sales wears me out. So this weekend I was going to get an entire weekend to myself, outside of work and church. Boy was I looking forward to it.
So after all of this what did I spend my free time this weekend doing? Missing my wife and daughter. Wishing I had gone with them (and I hate weddings). Now they are home and I am much more happy. Weird how things can change and you can be very happy about it.
Saturday, April 17, 2010
Lonely
Well, I am enjoying some time alone. However, I am missing my wife and daughter terribly. I know this is just a short post but I wanted to get this off of my chest.
Friday, April 16, 2010
Free time
Well for the first time in over ten monthes I have an entire weekend to myself. I am not sure what to do with it.
Obviously I have to go to work today and tomorrow, but then what? No muchkin to play with. No wife to pester when I am bored. How am I going to enteraine myself? These are the questions that burn in my mind.
Updates on Laura. She sits on her own. She cannot yet pull herself into a sitting position from laying down. But she tries. She is figuring out how to drink without a bottle or sippy cup. This is huge. She is actually ahead of some of her class mates on this skill. She is working on crawling. The big issue is her upper boddy strength. We have several exercises to help her work on this. She is basically coming right along.
Obviously I have to go to work today and tomorrow, but then what? No muchkin to play with. No wife to pester when I am bored. How am I going to enteraine myself? These are the questions that burn in my mind.
Updates on Laura. She sits on her own. She cannot yet pull herself into a sitting position from laying down. But she tries. She is figuring out how to drink without a bottle or sippy cup. This is huge. She is actually ahead of some of her class mates on this skill. She is working on crawling. The big issue is her upper boddy strength. We have several exercises to help her work on this. She is basically coming right along.
Tuesday, April 13, 2010
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