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.

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.

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.

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

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.

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.

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.