Thursday, January 26, 2006

A Lesson in Faith

I received from a friend:
Mother of A "Special" Child

When I was young, I'd often say, I'd like to be a mom someday
While playing with my baby doll, I thought that jobs not hard at all
I'd have a baby, maybe two, a girl in pink...a boy in blue
Well I grew up and sure enough,
The baby that was sent to me, was born with disabilities
At first I'm frightened through and through, there's much to learn to care for you
This wasn't in my plans at all, when I was young and played with dolls
Your mind and body were so weak, you might not ever walk or speak
So much special care required, I'm often scared and often tired
As months and years go slowly by, I smile a lot but sometimes cry
To watch you grow and not complain, though you endure your share of pain
Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday
But I knew that was not to be, not physically or mentally
And so I taught you best I could, your progress wasn't very good
But then one day I realized, a I gazed into your loving eyes
That I had learned so much from you, determination...courage too
A love so unconditional, it floods my soul and always will
I'm proud to say I gave you birth, for you're an angel here on earth.

My response:
It's kind of funny because I get a lot of comments like, "I don't know how you do it, I could never do all that." To be honest, I have no idea how I do it either, I just know I have to and that Heavenly Father helps me so much along the way that I don't feel overwhelmed with it most of the time. I have a totally different paradigm and way to look at things than just about everybody else I know, though. Living with disabilities, etc. every day is so different from a lot of people's lives, but SO my life. Does that make sense? I know I don't make sense to a lot of people, I didn't think when I was playing with my dolls or babysitting or sitting in Child Development class that it would be this way. It's weird to even try to picture "the other" way because that will never be my life. I have a hard time even understanding a family with 4 children 2 years apart because I couldn't possibly do that. Let's say I was already expecting so that the new baby would arrive when Gracie was just past 2 years old. That would mean 3 kids in diapers (again) and 2 that don't walk, plus 2 that do- in different directions! :) I have to remember that families that do that, usually have an oldest who is responsible and tall enough to hold the hand of a younger sibling in a parking lot, one or two who obey and understand punishment enough not to have a meltdown in the grocery store over a treat. I really don't feel like a Mom with 6 years of experience. I have 6 years of experience with babies, but I'm only qualified with 3 years of experience in other things that so far I've only done once, such as potty training and punishing, etc.

I love my life- so much! I don't always understand my positive outlook except to say that Heavenly Father blesses me abundantly every day and that balances out the challenges that come along with this territory I am navigating. I will probably never hear Becca say, "Mama, I love you!" but I know that she does and I know she knows that I love her and that's what I have to go on until the millennium. Someone also once told me that they didn't understand why I seem to have so much faith. I don't know how to live any other way. Becca proves to me every day that the spirit inside her body needs to be here so badly that even though it has to live in a body that doesn't work properly, she is still able to find joy in her life. How can I, with all of my brain capacity, etc. not have faith when I am witness to Spiritual happenings every single day?

Wow! Didn't know I had all that in me! :)

Saturday, January 07, 2006

The Genesis of Utahkids

So, do you really want to know how the Utahkids list got started? Val is spot on when she says it is inspired.

The setting is this, an Aggie Village student family housing apartment in Logan, UT. A family lives there with their brand new baby daughter, Rebecca. Rebecca has many difficulties, but isn't now in th hospital and now her parents are meeting lots and lots of Early Intervention workers and trying to squeeze out room in their tiny apartment to help Rebecca to be able to receive services. As the mother, Diana, meets all of these people and starts to learn how to best care for her angel Rebecca, she feels hopeful and looks forward to learning more about her daughter as well as connecting with other parents of special kids not unlike hers. Word traveled fast as the therapists learned that Diana was not only doing the therapies they recommended for her daughter ;), but that she wanted to meet other parents.

Meanwhile, there was a group in Salt Lake called the ICC Inter-agency Coordinating Council who met with representatives from E.I., Pre-school, Babywatch, medical fields, etc. They wanted to make transitions smoother and help inform parents of their desire to help them without overwhelming them with too many things all at once. So, the idea came to them to include parents in their planning processes. They wanted to have a group of parents as members of their council to help them direct their goals and services and give input on what those services mean to a family. So, they talked to their Early Intervention programs, etc. asking for recommendations of parents that would be willing to meet with their committee.

Somehow, some way, Diana was asked to be part of this committee. Well, it just so happened that Diana's husband, Geoff, was just about to graduate with his Bachelor's degree and they were planning to move to Tooele. This made it possible for Diana to accept the invitation to be part of the committee and be able to drive to Salt Lake from Tooele instead of from Logan to attend meetings. They moved into Geoff's aunt's house and although they went a year and a half without a job at first, they started their E.I. services in Tooele and Diana was all set to attend the meetings. One day, she was standing in the kitchen of their rented-from-family home when Diana got a call from Janet who was not only already part of the committee, but also coordinating parents to come to the meetings. It was there in the kitchen that Diana listened to Janet's desire to find a way for parents all over the state to be able to connect and meet each other. Maybe we could set up meetings in the Health Department building for them to come and mingle and meet. That's a great idea, Diana thought, but some of those kids are going to have a really hard time traveling. And besides that, some parents won't be able to bring the kids that are confined to their homes or even hospitals sometimes. That's when the inspiration came, that the Internet offered a way for any parent, anywhere in Utah with even periodic access to a computer could connect, talk and include people from all over. Diana, at the time, wasn't even sure how that would happen, but Geoff did. He knew how to set up the group under Yahoo and how to invite the first few people.

It was really slow at first. Here and there people wrote in and Diana reported to the council that almost 10 people were signed up, then the next month we were past 20. On and on it went until there were not only people signing up and watching the group, but people writing in to the group and connecting and building friendships and supporting each other.

I could never have known where it would go from there. I couldn't have pictured all of the faces I have met since then that have changed my life. I am so grateful for Janet and that committee that helped find us few parents and from there, meeting more and more parents. I went to a retreat in Park City with other parents and groups of people from the Early Intervention groups in 5 or 6 states when Emily was 2 weeks old. :) I have loved being involved and as my kids grow and get more rambunctious and it's harder for me to attend meetings, I am so glad to have already forged that connection. How many of us have come here in the middle of the night and then had many warm responses the very next day?

So there you have it! I was part of a team of people who put it together, really. You all have made it what it is today.

Lots of love!