Apr

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Featured Blogger - Rhett’s Journey

Posted by preciouschild

April 1, 2008 |

family1st.jpgWhat is your name and where do you live?

My name is Pam Bird, and my husbands name is Andy, we live in Utah

Your website?

Rhett’s Journey

Your kids’ names, ages, and disabilities?

I have 4 children, Dakota is 12 and has Asperger Syndrome, Hunter is 9, Chloee is 5, and Rhett is 2.  Rhett has Down Syndrome and many other health and medical issues.

Do you blog about their issues? What do you personally get out of that?

I blog alot about Rhett’s health and medical issues, and some of Dakota’s. Dakota was just diagnosed, so I am still learning alot about his condition. For me, blogging is a major outlet. I have always written in a journal, but the blogging world is so great because there is so much support out there. I also like the fact that I can document our trials and triumphs with pictures, and it doesnt take a whole lot of time like scrap booking does. It’s also a great way to keep our family up to date on Rhett’s medical issues without spending all of my time making phone calls every day.

What does a “typical” day consist of for you and your family?

The days in our house are crazy. There literally is never a dull moment. We wake up in the mornings, make sure Rhett and Dakota have their morning meds, and get kids off to school. This year is rough as we have kids going to school at 3 different times a day, and coming home at 2 different times. We don’t have bus service, yet the schools are too far to walk to. After the older kids are in school, Rhett and I usually have some type of Doctor appointment or therapy to go to. He receives Physical, Occupational, Speech, and Vision Therapies, each of them once a week. Dakota also sees a therapist once every two weeks. Rhett has many specialists that he sees, and right now we are trying to get an upper hand on some of his medical problems, so we make many trips 75 miles one way to the children’s hospital in our state to see his Cardiologist, Pulmonlogist, ENT, Opthamologist, and Neurologist. We stay pretty busy. The rest of my time is usually spent keeping up on our home, and calling and arranging therapies, as well as making sure our two typical children are not feeling left out. At night after the kids are in bed, my husband and I like to cuddle in bed and watch a movie as our alone time.

How have their disabilities affected the children specifically?  And the family as a whole?

With my oldest son, Dakota, his disabilities have affected him in alot of different ways. Mainly socially at school. It’s hard for him to have so much knowledge but lack in social skills. He is starting to realize that he is different than his 12 yr old peers. I guess I can’t shelter him forever. As far as Rhett is concerned, he is young enough not to know that he is different. We treat him just like we have any of our other kids. He gets put in time out, he climbs on things, and he likes to tease his brothers and sister when they are playing a game that he knows he isn’t allowed to play.

As far as the family goes, we really try not to focus on our children’s disabilities. We focus more on their abilities. Andy and I always say, “Who cares what they can’t do, look at what they CAN do!!” Our family has been affected more by Rhett’s medical issues than his disability. It’s rough on the kids to see him go through surgeries, and since he was overdosed on pain medication when he had his last surgery, my other children seem to be really anxious about all of his upcoming surgeries.

How have their disabilities affected you as a person and as a mother?

Having children with disabilities has taught me patience, as well as the knowledge that I cannot control everything. I am definitely much stronger than I ever was before. I have handled more than I ever dreamed I would be able to. My husband and I have a much stronger marriage than we did before. We have learned that we need one another to get through times of crisis. I have learned that life is more precious than I ever could have imagined, that we need to cherish each and every day that we have with our children. I also have learned to take time to enjoy the simple things in life. I never realized how much fun a sock could be until I had Rhett.

What did you do right? What do you wish you had done differently?

Being an advocate for my children is definitely something I have done right. Taking the time to educate people about their disabilities, and showing that they are more like typical children than not. Whenever someone stares at Rhett, unsure of him, I always take the time to have him say “Hi” to them, and show off his signs that he knows. By then they are hooked and amazed at how smart he is. I believe it takes away some of the misconceptions that people have of individuals who have Down Syndrome.

As far as what I wish I would have done differently, I had Dakota at 16 years old. Although I do not wish at all that he wasn’t here, and I wouldn’t change anything about him, I do wish that I would have waited until I was a bit older to have children. It was really hard being a teen mom, and missing out on my high school years. I didn’t get to go to my senior prom because Dakota got sick that night, and going to the prom was always one of my biggest dreams as a teenager. Of course now I realize that it wasn’t that important, but when you are sixteen and have a child you are thrown into a grown up world, and your teenage days are over. You become responsible for someone else’s life rather than your own. It was a huge reality check for me.

What do you want other parents fighting the same fight to know?

Having a child with a disability in itself is not a huge deal. I really find my children with disabilities to be just like any other child their age, with just few extra bumps in the road here and there. Having a medically fragile child is harder to deal with than the disability. Most of Rhett’s health issues have absolutely nothing to do with his Down Syndrome.

The most important thing to remember is to love your spouse, and not pull away from them. Andy and I are each other’s rock, and we continually lift each other up. If you have other children, make sure that you create one on one time with them. Even if it’s just a story before bed every night, or a trip to the store with just you. That way they know that they are just as important to you as your child with the disability.

Anything you else you wish to share?

I love my family, and I am so blessed to have each and every one of them. I am honored to be called a wife and mother to my husband and children.

Thanks so much for doing this, Pam! 


Comments

1 Comment so far

  1. Bonnie Burt on April 1, 2008 2:27 pm

    We have recently completed “Strong Love, a film about Down syndrome, which highlights some of the issues you raise in your blog. We thought you might be interested in knowing about the film. We think Holly and Jon are testimony to the incredible potential we all have.

    It is playing on May 10th at the Metropolitan Museum of Art, NYC- Sprout Film Festival: http://www.gosprout.org/film/prog08.htm

    Strong Love is the story of world-class weight lifter Jon Shapiro and his childhood sweetheart Holly James, both of whom were born with Down syndrome. This documentary follows the couple over the course of three years, starting with their decision to get married. Their challenges, their triumphs, and their complex, sometimes surprising relationships with family and friends are at the heart of this inspiring film.

    A recent review from the Down Syndrome News:
    “Some scenes will make you cry, others will make you laugh. All in all, it’s a picture of life full of surprises, challenges and joy.”

    We have posted a short excerpt from the film of Holly and Jon practicing their wedding vows if you are interested in previewing it. http://www.youtube.com/watch?v=tLFhP5olHvE

    Please contact us for more information.

    http://www.bonnieburt.com
    56 minutes
    2007

    STRONG LOVE

    A film by Bonnie Burt

    “Strong Love” tells the story of what happens when a world-class weight lifter and his childhood sweetheart — both born with Down syndrome — decide to marry.

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