Sad...again...still

I've been sad lately...really sad. I'm beginning to wonder if I'm experiencing some post-partum depression, but when I look at the "checklist", I don't meet the criteria for the run of the mill ppd. So, am I just experiencing the expected sadness anyone has with the loss of a dream? Is this normal?

It seems to me that so often, other moms with children with DS are so positive. They don't seem to have the kind of sadness I have. They seem to have found the joy in their child. I am still looking for it...Yes, I know there are a lot of things that could be worse, but this is my reality and it's one I never, ever expected to be living.

Nate still can't hear me, so even talking to him doesn't make a difference - I get no response. The only time I get a response is when I make funny faces or give him a bunch of kisses on his neck. We've finally been fitted for hearing aids, so he'll have those soon. But even the thought of hearing aids is overwhelming to me. Take them out every time he goes to sleep or takes a shower/bath. Change the battery every 10 days. And then there's the concern of if they'll even stay on his tiny ears. Oh, and the audiologist said to expect to visit the ENT often to have Nate's already impossible ear canals cleaned out (nobody has been able to even see in his left ear yet!) - it turns out putting plugs (hearing aids) in small canals that tend to accumulate buildup anyway is not a good idea, but that's the choice - ear infections and cleanings OR very limited hearing.

He is almost 8 months old and his activity is still so limited. I feel like I spend the day moving him from one place to another to try to continue to stimulate him - he just gets bored since he can't sit up or move around on his own. And I can't use the items that were good for Cody - they aren't good for Nate's development. So, no jumpers, walkers - anything that spreads his legs apart or promotes an activity that he is not ready to do on his own. So, that limits the options.

And then there are the napping issues. Nate is a champion sleeper at night, but daytime is a different story altogether. He may take a 30 minute nap in the morning if I'm lucky, but then will go the rest of the day without sleeping. So, he is a complete pill the entire afternoon - fussing and crying and only happy if I hold him. At that point in the day, the last thing I want to do is hold him. My mom keeps encouraging me to figure this one out - I didn't realize how much it was really affecting me. Thanks Mom.

Okay, that's my rant for the day. I'm having a tough time.

To my friends who have called or emailed, I'm sorry I've been distant. To my dear sweet husband whose been incredibly loving - I'll find my way back to happy.

Please be patient with me.

-Danielle

Mondays - My new day "off"

Since my last post, I have really been thinking about the balance of trying to just appreciate Nate for who he is and making sure I'm taking care of all of his needs. I've had some really sweet time with him this week and am looking for ways to stay in the present.

What I've realized is that therapies, research and making appointments are what really pull me away from this great place with Nate. So, I've decided to try to take a day "off" from DS stuff each week. I think it will be Mondays - those will be my days to just really focus on who Nate is and appreciate his sweet, developing personality. I will not be distracted by therapies, rushing to appointments, reading other blogs, researching, etc. I will simply love on Nate.

One other thing I am going to try is to have one set time to make DS-related phone calls each week. So, I'll just make a list and make all of my appt calls on one day.

I'm excited to try this new approach and hope it will help me to start my week off by remembering that Nathan is a baby, not a syndrome! (I heard that from someone at the conference and thought it was great!)

-Danielle

Welcome to the Club

So, it's been over a week since we returned from the National Down Syndrome Convention and I am just now feeling ready to write about it. Well, not really, but I feel I need to even if I'm not ready.

First, let me say we are glad we went to the convention and will go again. We learned great information and met some terrific people (loved meeting some fellow bloggers). When we first returned home, I thought I just felt neutral about the experience. Plenty of good and also plenty of reality check.....but, as I've processed more, I've realized it was really harder for me than I expected. It was our official induction into the "Club" we never wanted to be part of.

The hardest parts for me were the speakers and seeing a lot of adults with DS (I still love seeing children with DS) in one place. Yes, those who spoke at the general meetings were impressive and inspiring, but some were also still tough to understand. And if these were the "chosen ones", would this be the top of what we could expect for Nate? And then there was the really broad range of adults with DS we saw throughout our conference experience. Some were well-spoken and took pride in their appearance while others looked like they'd given up and simply shuffled along with their caregiver. So, how much of this is the direct result of their upbringing? I have a hard time believing that all of those people who "shuffled around" were not given the opportunity to succeed - yes, maybe some of them, but not all. Does that mean that we could give Nate every chance to succeed, spending a lot of time, energy and resources on him, but his ceiling is already determined?

When this day started, I had resolved (AGAIN) to focus on today - to look at Nate for the sweet little guy he is and try not to get bogged down in the worries of the future.

But then, during naptime, I had to make phone calls for appointments (hearing aids, 2nd echocardiogram, cancel OT because it seems redundant right now) and do some research (are there any speech therapists in our area who practice the kind of therapy I learned about at the convention?) and those just sucked me right back out into the concerns and "what ifs" I have a hard time escaping.

So, for those of you out there who are praying for us, this is my ongoing prayer request: That we would live in the present and be hopeful for the future.

-Danielle

Wordless Wednesday - Bathtime!

Grocery Store Comments

We're in California this week, but I wanted to be sure to post this before I forgot.

We had a very interesting experience yesterday. We stopped at Safeway to purchase baby food, formula (for all of you hard core breast feeders - yes, I tried very hard, but the supply just never came) and toothpaste. I was holding Cody's hand and Bob had Nate shlumped over his shoulder. Since we only had a few items, we went to the self checkout lane. Unfortunately, they were having some issues with the computers and we had to wait for the attendant to complete our transaction. A few minutes later, she came to us and apologized and told us the items were "on us". We were pretty pleased with this, but a moment later she said something that caught us offguard. She said, "Having a sick child is hard enough, you don't need to deal with this too.". If we'd purchased medicine, this may have made sense. So, as we walked out of the store we realized she must have noticed Nate on Bob's shoulder and thought his DS was "hard enough".

This was the first of many grocery store encounters we are sure to have. At least this one saved us 20 bucks!

-Danielle

Convention - Mixed Emotions

So, we're heading down to CA tomorrow to visit friends for a week before the National Down Syndrome Convention. We'll spend the first part of the week in the SF Bay Area and the 2nd part in the Sacramento area. The convention is F/Sa/Su next weekend at the Sacramento Convention Center.

I have mixed feelings about going to the convention. It feels like this is our official induction into this club we never expected we'd belong to. We have been able to control how much information and exposure we've had to DS in the past 7 months, but at the conference it will be inescapable. Seeing hundreds of people with DS in one place sounds really overwhelming to me.

On the other hand, I am really looking forward to connecting with some of the other bloggers I've been privileged to be on this journey with and meeting others who deeply understand the emotions we are going through. I'm looking forward to having experts at our fingertips. People who know a lot about DS, not just a little bit about a bunch of different kinds of physical/emotional/mental challenges. No offense to the therapists and special ed teachers we've been working with, but they do not necessarily know the latest research as it pertains specifically to DS. I'm also looking forward to meeting people with DS who will be able to broaden my picture of what it looks like to live with DS as an adult.

I'm hoping to come back with a deeper network, more information and to feel empowered to better care for Nate.

I'm not sure if I'll be able to blog while we're gone, but will be sure to when we get back!

NOTE - FOR THOSE OF YOU WHO HAVE CHILDREN WITH DS, BUT ARE NOT GOING TO THE CONVENTION...IF YOU HAVE SPECIFIC QUESTIONS YOU'D LIKE ME TO ASK FOR YOU, PLEASE POST HERE!

Take care,
Danielle

Tongue Tricks

This is a video I took last week, but have had a hard time uploading it!

Nate discovered his tongue can do some pretty fun things!

Enjoy,
Danielle