The Lingo

There is a steep learning curve when you are suddenly thrust into being a parent of a child with special needs. One aspect of this has been learning the lingo that is accepted in this community.

Today is "Spread the Word to End the Word" Day. The word: "Retard"
http://www.specialolympics.org/03-31-09_Spread_the_Word.aspx

So, I'm spreading the word.

Please, don't EVER use the R word - it's old and it's hurtful. Instead, use mentally/intellectually/emotionally disabled or challenged.

A couple of other things I've learned. Instead of saying Nate is a Downs child or Down Syndrome child, a better way is to say he is a child with Down Syndrome. Down Syndrome does not define who he is (although I may feel like it does at this point), but is a part of his make-up. (A very old and ugly term used for people with Down Syndrome is Mongoloid - yuck!!!)

And when describing Cody, the accepted term is "typical" versus "normal".

So, I beg you....help your families and friends to begin to use terminology that is more sensitive so that when Nate is older, he won't have to hear those words.

Thanks!
Danielle

Hearing Test #4

As many of you know, we've had a hard time getting a read on what is really going on with Nathan's hearing. He didn't pass the test in the hospital, so 2 weeks later we went to an audiologist for a follow-up. In that test, the left ear passed and the right didn't. We went back again at 7 weeks and it appeared neither ear was passing and he may have permanent hearing loss in both ears and need a hearing aid. So, for the past 6 weeks, we've been expecting to have to deal with the hearing aid on top of the other challenges Nate will face.

BUT that's not the case.

Today, Bob took Nate to his 4th hearing appointment and both ears passed in the normal range! Praise God!!!

The reason this has been so tough is he has VERY small ear canals (which is common in children with DS). His hearing may actually be even better than they tested today. He's been congested for quite a while so some fluid and gunk is stuck in the middle ear. So, we'll go to an ENT doctor and get his ears cleaned out (this will likely be something we'll have to do often since his ear canals are so small - his right is actually about half the size of the left).

We will need to continue having his ears checked each year, so prayers for his hearing are appreciated. Clear hearing is so important in speech development, so we're hoping his hearing will stay as they are or even get better.

-Danielle

Better Today

It's Friday night and I'm exhausted. As I sit here pumping one last time for the day, I reflect on how much better I feel today than I did at the beginning of the week. Today I was able to appreciate the sweetness and beauty of our Nathan. I took many pictures and had some great snuggle time with him. He is such a sweet little guy and I am appreciating that today.

I'm going to try really hard to live in the now as much as possible. Yes, it's necessary for me to look ahead some to make sure we're getting the care Nate needs in the time he needs it, but I do have the tendency to look much farther ahead than necessary. Here are some pictures I've taken in the last couple of days. Nate is starting to smile more, has found his hands, is starting to suck his thumb and cooing a lot at his little toys in his play gym.l It's hard to believe he's already 3 months old.

-Danielle

Overwhelmed

I'm feeling very sad and overwhelmed tonight. I just have had a sinking feeling all day that I am missing something. I feel like I'm terribly behind in Nate's therapies and care. I'm doing the things the early intervention people have told me to do, but I just know there is more. I've been reading about these programs (neurodevelpment programs) out there that do an intense assessment and set up an aggressive program for us to follow to set Nate up for the greatest success. Of course, these are not covered by insurance and are very expensive. So, I need to spend every moment searching online and reading books to try to make sure I'm doing everything possible.

I barely have energy for Cody right now, so I have that guilt piling up on top of the "not-doing-enough-for-Nate" guilt.

I'm sad....very sad.

-Danielle

Brothers

When we found out we were having a 2nd boy, I must admit I was a bit disappointed at first. We were pretty sure 2 kids was going to be our max, so my dream of having a girl was quickly slipping away. But, after just a short period of adjusting to the idea, I was very happy for Cody to be gaining a brother. Both Bob and I basically grew up as only children (I have half-siblings who are much younger than I) and felt strongly we wanted Cody to have a sibling - it seemed to us that giving him a brother would be a huge gift.

But now our picture is so much different than we imagined. The relationship Cody and Nathan will have is not what I had expected. Cody will likely feel a big responsibility for his brother and could eventually even need to care for him. They will not relate to each other in the ways typical brothers do. But, I also know each of their lives will be enriched greatly by the other. I hope Cody will learn a depth of compassion from being the big brother to Nathan. And I hope Nathan will learn to acheive more than expected because of Cody's encouragement.

No, this is not the picture I had in my mind, but I'm hopeful we'll see the beauty in it as it develops.

-Danielle

Good News

We got some good news today! We learned that the cause of Nathan's DS is random and not hereditary (about 5% of cases are hereditary, or caused by translocation). So, that means we are not carriers nor is Cody. Very good news! So, if having another child is in our future, we have about a 1 in 100 chance of having another child with DS versus a 1 in 2 chance - big difference.

Strength

It was not long ago that I would look at parents with special needs children and think, "I'm so glad that's not me". And during my pregnancies with both boys, I often expressed fear of having a child with Down Syndrome by saying, "I just don't think I could handle that. I honestly don't know what I'd do".

Well here I am....I've been one of those parents now for almost 3 months and now I know I can and will continue to handle this with as much grace and strength as I can find. Now I know the answer of how I would handle being a parent of a child with Down Syndrome - I lean heavily on my faith, family and friends. In those first couple of weeks, I had absolutely no strength of my own. There were many times I cried so hard that I'd fall into Bob's arms and could barely stand on my own. I spent much of those first weeks on my knees crying to God, asking him "why" and begging for strength and peace. I relied on phone messages, emails and cards from friends and family. The first 2 weeks were awful....really awful.

But they were also the best 2 weeks of my life. I felt a communion with God I'd never felt before - a closeness I never imagined. Each morning, as I dragged myself out of bed, stumbled down the stairs and fell to my knees beside our red couch, God led me to places in the Bible that gave me strength and courage. Scripture like:
"So do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isa 41:10
"God is our refuge and strength, an ever-present help in trouble." Psa 46:1
"With God, all things are possible." Matthew 19:26
and so many more....

After the first 2 weeks, the shock began to wear off and I began to sink into our new life. Each day I have a time of sadness - some are passing thoughts, some are hours of grieving, but I know now that I have the strength and the relationships to get me through.

I am so aware now of how blessed I am to have such amazing people in my life and am trying desperately to not take that for granted.

-Danielle