Friday, December 19, 2008

Life is Hard

Ahh! I am here...thanks to the intermittent internet of our neighbors and best friends. If I sit in just the right spot, it does not go out on me.

Let me just say right now...this is going to be one of those posts. I'll throw it out there...

I am exhausted. mentally, spiritually, and physically. Tired to my bones. This has been a week of nonstop Christmas parties for us, for each kid, for youth group. It's almost over...tomorrrow night is John's work party and then I can stop making favors, assigning foods to bring, and decorating classrooms. That's the physical exhaustion...on top of the parties, Seth has had evaluation after evaluation, appointment after appointment, and the next two weeks of appointment free time is stretching before me like an oasis.

I went to a deaf Christmas Party last week. I went on my own with Seth and with Ava, and as we walked across the street, I felt myself start to sweat. Everyone was deaf. Real deaf people, not hearing people who were there to teach us sign. These people couldn't hear me and couldn't clarify things for me if I didn't know how to ask them to in ASL. I had one semi-successful conversation with a woman and her adorable baby, then quickly slid right down the mountain of depression I have been avoiding for so long. Everyone was signing! No one was talking. It was fast, and overwhelming, and as I stood outside watching Ava play with all the kids, I felt like falling to the ground.

This is hard! Not just the signing, but all of it! I am so glad I got to bring a baby home, so thankful to God for healing him and gifting him to us, but...this. Is. Hard. Therapy is hard. I feel like an idiot pointing to my ear and saying "Seth, I hear the train! It says CHOO! CHOO! CHOO! Do YOU hear the train?" As he stares at me, not hearing a word.

Taking my son to specialist after specialist, thinking I'm going in for simple NICU rechecks only to find out each time that there is something they are concerned about...Seth's list of doctors is longer than the rest of the family's put together.

Signing is hard! I mean, why is the syntax the complete opposite in ASL? I feel like I have to turn my phrases all around before I can sign them, then I get confused about what I was trying to sign in the first place.

John working two jobs is hard. Hard for me, because I feel bad that the reason he is doing it is because I couldn't go back to work due to Seth's busy schedule, and because I get frustrated that John never gets to come along for any of Seth's appointments. Hard for him, because he never gets to see the kids. Hard for us, because we never see eachother, and when we do, we are both tired and cranky.

Now, I know that I am being ridiculous. As hard as therapy is for me, I see every day the ways it is helping Seth to be attentive to conversations, to take turns, to pay attention to facial expressions. And of course signing is hard! It's a foreign language, after all, and it's ridiculous for me to think that 4 months of studying it will make me fluent.

The specialists...they have Seth's best interest in mind, and of course it is important to find out if he does have this syndrome or that problem and exactly why he is so far behind in development physically.

John...I am blessed to have a husband so willing to work two jobs most days to keep us afloat, and never complain.

There are kids out there, families out there, much worse of than Seth, and than us. I understand that and my heart goes out to them, because I don't know how they do it. But after thinking about it, they probably just don't have a choice, they just love their kids and they keep going for them.

So, I get it. I get why each and every one of these things is hard, and I understand it logically. But sometimes, when I have spent four hours with my 5 month old son doing "tests" and I am waiting for the specialist to go call another, more special specialist, it all just seems a bit much.

I look at Seth and I see that he is happy, he is healthy, and I wish I could spend more time being happy about that than being apprehensive about his development, his hearing, his surgery that is only 5 months away. But I find the more exhausted I am the harder it is for me to see clearly, and right now the only things that are the ones that are stressing me out.

So, we could use some prayers. For Seth, and for us. There are a few things up in the air for him, and he will be going through some retesting in a few different areas (motor skills, some more hearing tests, and his heart). I will post more details on what exactly is going on later, as log as my internet connection holds. =)

Happy Christmas Vacation! Just in the nick of time. Hope you're all relaxing!

8 comments:

Rose said...

What a wonderful Mama you are, you are learning to sign! That is amazing and brings tears to my eyes.

My grandma still hasn't learned to sign, my mom is 53. She kind of stamps her feet and talks loud.... still.

And thats not so uncommon for a parent of a deaf child. Most people don't make changes for circumstances, they expect their circumstances to change instead.

Keep at it, Mama. You are doing a great job.

E said...

El, just think of it a few years down the road. You'll be signing fast and furiously. Jace, Ava and John will be, too. You and Seth will be the best at it though of course. You will wonder why you ever thought it hard. You will be one of those fast ones that other new mamas look at in amazement. You will get there and this will all just be a 'fond' memory. =0)

Be glad you're young and learning it while your brain's still clear! With teenagers in the house, mine is already FRIED!!!

Hang in there. You'll do great because you WANT TO LEARN! Praying for you and yours.

Kameron said...

Everything is harder when you are exhausted. You can't think as clearly and your emotional fuse is shorter than normal. Sometimes it helps me to take 10 minutes (even when I don't have those minutes to spare) and get back to center. I'm not saying it's a magic cure and sometimes it only delays my outburst by a few hours, but it does help. :O) I will keep you guys in my prayers.

Shanda said...

I only have a second; but wanted you to know that I am praying for you. For Seth. For John...all of you.

HUGS! & Merry Christmas!

Momma Mango said...

Hang in there! I'm praying for your family. The only ASL I know is what I learned from my kids' Signing Time DVDs. (My kids really love them and have learned lots of common signs.) I would have problems putting sentences together, too, because ASL does seem "backwards". But it will come. You can do it! :)
~Susan

Mandy & Jeremy Hall said...

Hang in there girl! I've been thinking about you!!! Don't forget to take care of yourself, too!

Happy Holidays!
Mandy

Les said...

Oh El... our much missed Family Dr. Daniel Montero MD moved to Florida about two years ago b/c he had a deaf son. He moved so his son could be part of this amazing deaf school and I heard his son is 3 and doing great. May be worth looking him up if you are close to Lake Placid...

momof2greatboys said...

Hi~ I'm new to your blog but I wanted to offer this! I too have a child with a special need and I so understand what all of the specialist feel like. We sit two years out from all of the doctors and the questions and the appointments so I want to reasure you that it does get better! I am praying for you and your family!!

I also have a degree in early childhood special education and sign fluently. I will tell you that it is really hard to learn sign when you don't have to use it everyday. Give yourself a little break and just know that you will learn to sign as Seth does and when he uses it more, you will too!!
You are a wonderful mom who has imbraced Seth for what he is and who he will be someday. Never forget that!!! God Bless!

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