Dealing with Anxiety

I haven't been very good about blogging lately.  I was actually thinking this morning about quitting.  Then I thought maybe I should start a new blog called, "letters to my special needs child" or "letters to my children" or something.  But really, I write this to commemorate our journey, and I not only want to share our journey with others, I want to remember where we've been, because it's important to look back.  So, maybe I should be better about writing (between waking up every few hours all night, changing the diapers of two children, nursing, preschool drop-off and pick-up, making dinner, and working), because someday I'm going to forget the good times, the struggles, and the victories, and it'll be nice to go back and read them.

I've been struggling a lot with anxiety about the future (maybe that's why it's been hard to write).  As you can imagine, thinking about Sadie's future can be a little stressful.  And I'm an over-planner, so it's hard for me to imagine how I'm going to take care of Sadie when I'm not sure what her needs will be tomorrow, let alone 5, 10, or 20 years from now.  But what I didn't realize until I had Ezra, is that I'm just as anxious about his future.  I am just as equally uncertain about Ezra's future needs as I am about Sadie's.  The only difference is that lots of people have raised typical, healthy children before and I have lots of people to ask for help.

Some people eat when they're worried or anxious, some people don't eat at all.  When I'm anxious, I bite the inside of my cheeks and lip and tongue the retainer behind my front bottom teeth.  It's very uncomfortable, but it makes me physically aware of my anxiety, which can be helpful in trying to let it go.

So, how does one let it go when they're worried about the future?  Well, isn't that the million dollar question among special needs moms (side note: why is it that dads don't seem to worry as much about things?)  I thought I'd compile a list of a few things I do when I'm feeling anxious that help me feel better, even if only temporarily...

1. Call my mom.  I know not everyone has a good relationship with their mom, so call someone older and wiser than you, someone you respect and love, someone who can tell you you're doing a good job as a parent.  My mom doesn't always know the right thing to say, but she listens to my worries, and she tells me I'm doing a good job, and sometimes that is all I need to hear.  Because I think, if I'm doing a good job now, I'm going to stop doing a good job, and everything is okay, so it'll probably be okay in the future too.

2. Write.  Sometimes it's public blog writing, sometimes it's a private prayer journal, but somehow getting it out on paper makes me feel better.  When I blog, I am often seeking empathy from friends and family and the special needs community.  Sometimes I am just seeking accountability by making my feeling public.  And sometimes, how I'm feeling needs to just be between God and me.  I also think there's some value in writing down these fears and worries so that you never forget where you've been and what you've accomplished.

3. Exercise.  Do something active.  When you're body is working hard, your mind has a chance to clear.  I know that if I go for a walk or a run when I'm working out a problem in my head, I often come home with a solution.  It may be more about the fresh air than the actual exercise, but working through something physically can be very rewarding and lift my spirits, and clear my mind.

4. Get outside.  Like I mentioned previously, fresh air can really clear one's head.  When I lived in Oregon, it wasn't out of the question to drive to the coast and sit on the beach and just stare at the ocean.  There is something amazing and overwhelming (in a good way) about the ocean.  But you don't have to be near the ocean to get this.  Some of my favorite things to experience outside are sparkly afternoon water, the smell of freshly mowed grass, and the sound of a fresh breeze rustling through the trees.  I've also found that watching ants can be very calming, somehow their OCD-like behavior reminds me that if I just keep working on something one day at a time, before I know it, my big problem won't seem so big anymore.

5. Do a craft.  Sometimes I have my best ideas or remember some of my favorite memories when I'm sitting at my sewing machine, or painting a bedroom.  And if you're not crafty, get on Pinterest and lose yourself in the possibility of all the things you could do!!  It's a great way to escape reality for a while.  And if you are crafty, just think, you'll have created something!

Over the next few weeks we have a swallow test scheduled and a visit to the GI doctor, two things I dread.  I have been losing sleep thinking about how to plan for both of these so that I don't look like a fool, and so that I can best represent my child and her abilities.  I guess I need to spend some time doing some of the things on my list.  And I will try my best to give updates after each of these experiences.

Until then, I'd be happy for you to write in the comments what you do to help with worry and anxiety over your child's future, and let's all work together to keep the stress down!!

Emails from Strangers

Today I got an email from someone I don't know. This happens probably once or twice a month, someone finds our blog by searching for answers about their newborn with HIE or microcephaly or CP...sometimes, like this time, it's someone who knows someone who knows us. The funny thing is that no matter when I get these messages or what they say, it always seems like perfect timing for the perfect words. (God know our hearts, doesn't He?)

The one I got today was from a lady who went to HS with Brian's uncle. She told me a story about her aunt who has CP from being born premature. But her aunt was born in 1953 and things were a lot different back then for little special needs kids. They didn't have the services they have now. There weren't laws and policies in place to protect them and to make sure they got what they needed. Instead, it was common for doctors to recommend that these children be institutionalized and that the families just forget they ever were born. And sadly, that's what many families did. But this family was different. They had tried hard to have children and had many failed pregnancies. They were not about to "forget" their child, they had worked hard for this little girl and they were going to give her everything she needed, even if that was going to be more work.

She goes on in her email to tell me that her aunt walked for many years even after doctors said she never would. She talks about how her grandparents created their own homemade adaptive equipment so that she could feed herself. And when they were told she'd never read or write, her grandmother was determined to prove everybody wrong on that point too. This child was loved and her parents worked hard to give her the support she needed to become what many said she'd never be!

But she doesn't fail to mention that there were also hard times. She tells a story about her grandmother ordering special shoes for her child and the man telling her they only come in brown. But little girls didn't wear brown shoes back then, they wore white ones. And when she was told she had no choice, the shoes were going to be brown, she felt so defeated that she found a quiet place and just cried. She cried over brown shoes, because it was that one little thing that finally broke her.

This story is so encouraging to me in a couple of different ways. First of all, it's good to know that sometimes the little things are worth crying over. Sometimes you fight and fight and fight for all the big stuff that by the time you lose on one of the little things it can feel more defeating than it really is. White shoes vs. brown shoes may not sound like a big deal to you, but when your child is already so different from everybody else, the last thing you want to hear is that they can't have one more thing that every other child gets to have. It's not really silly at all, because you know in your heart that it's only one thing in a long list of things your child will not get because she's "different."

The other encouraging aspect of this email is that it serves as a reminder that Sadie is only 1 and a half. She has a LOOOONG way to go and a LOT of time to get there. Sometimes I am tube feeding her because she won't eat and I'm thinking to myself, "she's never going to learn to eat, we're going to have this tube for the rest of her life probably." Then I read a story about someone who's child was tube fed for a decade (yes, 10 years!!) and now eats and drinks totally independently with no issues. That's a long time...a lot longer than the 5 months we've had the tube. And I read stories like the email I got today about how they taught their child to walk and to read and I think to myself, "oh yeah, we have time, she's only 1 and a half!"

Look how far we've come just in a year! A year ago Sadie screamed every car ride. A year ago Sadie was still nursing! A year ago, Sadie didn't have any teeth!! A year ago Sadie was sleeping in bed with us and had to be held to take a nap. Think of what another year can do for us!

Sure, we have a long ways to go...Sadie can't even sit independently yet, but we have a long time to get there. My goals for Sadie aren't lofty and unrealistic, but maybe I set them low to increase the possibility of reaching them and surpassing them. And when I have days when I feel like all is lost and my kid is never going to do anything but sit and scream her head off, those will be the days, surely God will have somebody send me an email and remind me that my efforts aren't wasted and someday this little girl is going to have an even more amazing story than she already does.

The future is scary

Sometimes I fret about the future. When I was pregnant, I tried to force Brian to make rules with me about ear piercing and makeup and boyfriends concerning our unborn daughter. I know, all aboard the train to crazy-town.

Now that I have Sadie, I'm still on a train bound for crazy-town...but what I stress about is a little different. Let me show you what I mean...

Sadie is one and a half and pretty much all she does is lay on the floor or sit in her chillout chair. She doesn't do much...will she ever? We have an appointment with the wheelchair clinic this week and, I never thought I'd say this, but, I'm excited to get a wheelchair for her! Why would I be excited??? Because having a wheelchair means a strong, sturdy, supportive way to transport Sadie. Right now we're using a stroller that was fine when she was a baby, but she's coming up on 27 pounds now and the stroller just isn't cutting it for our mobility needs. Secondly, a "real" wheelchair gets us access to certain things and special treatment. When flying, we'll get to seat first, and there will (hopefully) be a little more urgency about having her wheelchair waiting for us in the jetway (instead of baggage claim...ugh). And maybe, just maybe...we'll get a handicap parking permit!!

But what does a wheelchair mean for her future? Remember when we saw that orthopaedist who told us Sadie would never be independently mobile? I've thought a lot about that comment. I've talked about it with the physical therapist, with my mom, with Brian, etc. and I don't see Sadie being independently mobile, I think she will always need a wheelchair. However, what I do see is Sadie being about to get around the house without her wheelchair, be able to climb into the car, and be able to walk from the jetway to her seat on the airplane. Of course, these things will probably require a little assistance. But, if she uses a wheelchair at school, at the mall, at Disneyland, that's okay. (plus hopefully we'll get to go to the front of the line and get on the roller coasters faster!!)

The future for Sadie scares me. Will she be able to talk at all? Will we be able to travel with her? Will she be able to sit ever? Will her hair be long and pretty to disguise her tiny head? Will we have to get a wheelchair van? Will her brothers and/or sisters be embarrassed of her? Will we ever have an empty nest? And what about potty training???

Recently I had a conversation with the physical therapist about potty training. I told her I'd like Sadie to be potty trained by the time she's 10. I think that's a reasonable goal. She told me she thinks potty training is totally doable for Sadie and that we should think about maybe starting when she's 3 or 4. That's exciting...but scary. How will she communicate that she needs to go? Will she be able to sit and balance herself on the toilet? Will she be able to get to the bathroom on her own or will I have to take her in there, strip her, and place her on the toiter? (wouldn't it be nice if she was mobile enough that she could take herself in there when she needed to go?!) See? Scary.

I guess we'll figure it out when we get there.

I also think about my own personal safety. Sadie is over 25 pounds, and growing so fast. She's huge. It's getting hard to lift her from the floor. Getting her in and out of the car is sometimes a struggle. What would happen if I hurt myself? If I can't lift her, who will??? What about when I get pregnant again? I can't be lifting 30 pounds of dead weight. And she's not even that big. She's one and a half...she is going to get so.much.bigger.

The future is scary for all parents, I think. And if I weren't worrying about how to change a diaper with periods and pubic hair, I'd still be worrying about periods and pubic hair. Instead of worrying about teen pregnancy and will she marry the right boy and will she get a college education, I'm worrying about how I'm going to lift her, and if she'll ever be potty trained, and when we'll ever get rid of the tube and she can feed herself. I worry about seizures and hip surgeries and wheelchair vans. But no matter what I am worrying about, the lesson is still the same...I need to just enjoy her now and worry about the future when we get there.

The Fast Forward Button

I've been reading a book about brain plasticity called The Brain that Changes Itself, and it is amazing. But I don't want to talk about the book (I'll save that for another post, after I've finished the book), I want to talk about the way it makes me feel.

Not only does this book talk about all the fascinating things science has learned about the brain and how it rewires its neurons, but it's full of success stories. Most of the stories involve either stroke victims or people with Cerebral Palsy. And, while it's encouraging to hear stories about children who were a lot like Sadie at her age that grow up to play sports with other kids and become independent little people, it also makes me eager and impatient.

Sadie will be 17 months tomorrow, she is a full-on toddler, her body looks like a little kid's, her voice is that of a little girl, and seeing all those teeth when she smiles always reminds me of how big she is. But she's still so much like an infant. She can hardly roll over, she can't sit, she still doesn't grab things with her hands consistently, and being on her tummy gets really frustrating for her after a few minutes. In so many ways it's really sad. But when I read these stories, it just makes me want a fast forward button. I KNOW Sadie will crawl and walk and eventually learn to talk. I KNOW Sadie will learn to go to sleep on her own, and I KNOW that she'll eventually get this eating thing down. And someday she'll have all her teeth and Brian and I will dance a little jig! But I want her to do these things NOOOOWWWWW!! (that's me whining)

When progress is in such tiny little increments, it's hard to get excited about it. A couple of weeks ago, we realized that Sadie can balance herself front to back when in sitting position (or being held), which is a HUGE deal! But 2 weeks later, that's all we're still talking about. There hasn't been anything else to get excited about since then.

I can't wait to tell our story about how Sadie was almost dead, the doctors told us she'd be a vegetable, they let us take her home because she was supposed to die. And now she does all these things that normal kids her age do. But we're not there yet, so far we only have the first part of the story...and it's an amazing part. But I want to know how it ends, because I have a longing in my heart like I've never felt before for my kid to dance with me to the baby beluga song, for my kid to walk to the mailbox with Daddy instead of being carried, to sing songs together in the car, all the things most parents take for granted. It's really hard to be patient when I can't wait to baby proof the house, to help her with her math homework, and then to hear her talk on the phone to her friends about boys.

Being a parent is so strange (in a good way), especially when your child has special needs. I have feelings and longings and desires for my child that I never thought I could ever feel so intensely. But, if I've learned nothing else, I HAVE learned that the brain is an amazing thing, made by God, that has the ability to shock and amaze even those who call themselves experts. And Sadie's brain is the most amazing I've ever loved.

Long Time No See

So, I know I haven't written here in a long time. I had this goal at the beginning of the year (no, not a New Year's Resolution) that I was going to write 5 posts a week, yeah right. My job has taken over my life. I didn't realize how much of my day Sadie took up until somebody else started demanding that time. But I like my job, and I'm not complaining or excusing myself, just explaining.

Some of you might say, "it's online school, how much is there really to do?" A lot actually. For priding themselves in allowing a "flexible" schedule there is sure a lot of my week that isn't flexible! I have meetings and live classes, and I have to make phone calls and chase down the kids who aren't working. Then there's the flexible part...grading and creating powerpoint presentations for the live classes. This usually gets pushed farther and farther down my to do list and then I end up working all evening...which I don't mind doing, but then bloging doesn't happen, and Brian gets bored, and things don't get cleaned. But a lot of my day I get to spend with Sadie, so I'm busy, but not unhappy.

I have all these blog-post ideas in my head that I want to write about, and I often draft something in my head while I'm out running, but by the time I walk through the door it's like everyone needs me and is so relieved I'm home that I quickly become engrossed in "mommy duties." And then I forget what I was going to write about.

Tonight, however, I'm feeling like a bad mommy, like a failure. And no matter how many times Brian tells me I'm not, I still feel like one. So, I need to write about it. Sadie needs to gain weight, that's what we were told at her 12 month appt (which I don't think I even wrote about!!!) so I have been working so hard to get her to eat. I am tracking her food, I am counting her calories, I am doing everything in my power to get her to eat 3-4 times a day, and it's a lot of responsibility. I am the one who prepares her food. I am the one who feeds her. I am the one who has to take her back to the dr. and be there when they weigh her and have the conversation about seeing a G.I. dr. And ultimately I am the one that will take her to more dr. appts. And I will probably be the one they tell first when they say she's going to need a feeding tube. So, when she doesn't eat enough, or, like tonight, when I force 1 or 2 bites too many and she pukes it all up, I feel the weight of that, and I feel like it's my fault, and I feel like I've failed as a mother.

It's not as often, but sometimes I do still wonder what life would be like with a normal baby. I'll probably always wonder, not so much anymore because I wish things were different, but because I just have no idea what that would be like. I read my friends' facebook posts about going to the science center, or taking first steps. I see pictures of first smiles and sitting and crawling, and sleping, and I wonder if they read my posts and think what it would be like if they were me. Probably not. I doubt they realize how badly I want what they have. I want to take Sadie to playgrounds and splash pads. I want to watch her learn how to crawl and sit and eventually walk. I want to brag about the yummy cookies we baked together or the cupcakes we decorated. I want to show off her craft projects, and write about the funny things she says and does. And I think I'll get all this...I'm just still wading through the muck of unknown, seeing all those posts is like being 10 years old and watching someone else open all my Christmas presents, but knowing I have to wait until next year before I get them.

I don't really know what I'm trying to say. I guess that we've come a long ways, and I don't wish to go back. This has been hard. And I'm sure in another year I will look back again and say the same thing. Does it get easier? Will the car screaming ever stop? Will eating continue to always be a struggle? When will she sit up? When will she stand? Will her vision ever be good enough that she can enjoy the movies or the science center or the playground? Nothing is guraunteed, and sometimes I don't feel strong enough for that reality.

Right now I guess I need to just live in the present. It's good to reflect on the past to remember how far we've come, but as for the future, I should probably just let it come as it will. So for now I will continue to live vicariously through my friends on facebook, holding tight to those dreams I have of doing the things they do. And right now I will be happy that Sadie doesn't need a feeding tube. And I will rejoice in the fact that I have a job that I like and I work with awesome people. And I will do my best to blog more often.

Hopes and Dreams

So, I know everyone is DYING to hear about my race last Sunday (vain, right?), but I'm going to make you wait a little longer, because this is on my heart right now. I have a friend named Lexi (she likes to go by Lex now, but I refuse to call her this, she will always be Lexi to me) and she has been going through some rough times. But she is strong. What is interesting is how her facebook comments, although mostly ambiguous, perfectly reflect her mood. You could say she wears her heart on her sleeve, er, facebook page.

Anyway, this post is not about Lexi, I just bring her up because she wrote on her facebook page today that she has unrealistic hopes and dreams. I will save you my speculation about what that might mean, and directly apply it to my life.

Reading this made me think about my hopes and dreams for Sadie. Tonight we were in the tub and I was asking Sadie what she wants to be when she grows up. A scientist? A teacher? A musician? Because really, in my heart, I believe she can be ANY of these things. Is this unrealistic to hope for? Maybe.

But maybe not.

I think about this almost everyday all day long. Will she do great things from a wheelchair? Or will she dance with her daddy at her wedding? Will she learn to play the piano? Or will her hands continue to be restricted so that she becomes a singer instead? Will she show the world that a diagnosis doesn't mean a damn thing?

Maybe. Maybe not.

The important part is that I have these hopes and dreams, no matter how unrealistic they may be. Because they keep me alive. They keep me from pulling my hair out. The keep me from admitting myself to the loony bin. They keep me from sinking into a deep, dark depression.

I do know this for sure. Whatever Sadie turns out to be 1. She will be beautiful, and 2. We will love her.