No One Wants to Hear

I have found that wading through this new and often foreign world with Cary Lynn that there is only so much that the rest of the "normal" world can stand.

When we first got Marvin everyone remarked on what a miracle he is.  How special he is.  How it is great that you just "can't tell" that he is different.  Not that I was shy about sharing.  I think that it is important to let people know that abuse is real and out there.  But because he "passed" and looked and acted "normal" no one seemed to mind.

Enter Cary stage left.  I am equally open about her.  But the reception I get from most is very different.

You see Cary can't "pass" as a "normal" child.  She looks different.  Her eyes don't focus on you.  Her facial expressions are a bit different.  She slumps, can't sit on her own, and her head and facial features are different.  Not big neon sign different, but enough to get questions and funny looks.

When people first asked about her, just like Marvin, I would begin to share.  But unlike Marvin a lot of people start getting overwhelmed.  I have found out that even though they may ask most really don't want to know.  I understand that it is a bit overwhelming, but you do not have to live with it every day.  I do.

So I have found out that there is a lot that people don't want to hear.  But that does not mean that I do not have a lot to say.  I have plenty.  That is part of why I blog.  It lets me say it.

People don't want to hear that my child has disabilities.  She does.  So does my son.  So does my husband.  I have learning disabilities.  I cannot pretend they do not exist, wish them away, or pray them out.  They are there.  To deny them would be living a lie and being a fool.  I prefer to confront them head on and deal with it.

People don't want to hear that Cary has a lot of doctor's visits and still requires a lot of extra care.  I hear advice on how to help her grow out of it, herbal treatments, once again praying hard that it will "go away", and all sorts of really stupid things.  People just want to hear that she is getting "well" and doing better.  So I have just learned not to say too much.  I tell people what I think they want to hear.  Don't get me wrong, Cary is doing better.  She has discovered that food is tasty.  But unless you know me really well and know what to ask me you won't be getting a lot of extra information out.  I have had my feeling hurt a bit too much lately to become an open book.

People don't want to hear how much it hurts me that I don't get to do the stuff that regular new mommies do.  New mommies get baby showers, lots of visitors, balloons, and all that jazz.  I got to spend it in the hospital worried that my daughter wasn't going to live.  Don't get me wrong, I don't NEED a baby shower.  We were going to have a meet and greet for Cary, but she was hospitalized.  I just mourn that I don't get to do the same stuff that others get to do.  It is hard to be different.  No one wants to listen to me spill my guts about it either.  They figure it was my choice to take this on and I should just have a stiff upper lip about it.  It WAS my choice.  But I have feelings too.  And they get hurt really easily.  I am a softy who cries at commercials that involve toilet paper and basic household products.

People also don't want to hear how hard it can be to be the parent with "that" kid in groups.  It takes a lot of guts for me to do regular stuff.  I went to a story time today and got teary looking at other one year olds.  Not that the moms and the lady who ran it weren't perfectly nice.  They were.  Plus Cary loved it.  But it is hard for me to see other kids and wish that my kid was up and running.  Or crawling, heck I'd even just settle for her destroying books like the other babies.  It takes a lot of guts to be that parent.  But I can't avoid every social situation in the world. Cary has the right to enjoy things her peers do.  She can't live in a box and she wouldn't be happy that way.

Things need to be said.  Words left trapped and left unspoken can really drag you down and eat you up.  Feelings left bottled up make you feel rotten.  So I write.  In hopes that someone hears what I have to say.  In hopes that there are still people who do care.  In hope.  Because that is what carries me towards the next day.  Hope.  Hope that things will be better.  Hope that I can make a difference for my daughter and others who have to live the life I live.  Hope.  A powerful and wonderful word.

The "art" of trying to find normal

We survived another week of doctors.  The one thing I have learned so far is that the more doctors you see the more different opinions that they will have.  Sometimes I don't know whether to wag my ears or listen with my tail (not that I have one but that is not the point).

We went to her PCP Wednesday and they pronounced Cary a fine specimen of babyhood and told me to keep up the good work and gave her five shots.  I felt great.  Then we went to the GI doctor today.  I was once again reminded that I had a medically fragile child and when did I want a G-Tube installed.  Say what???  I patiently informed the doctor that she was eating just fine orally, thanks.  He brought up that she was choking on food and informed me of the danger of it.  I once again told him that I had worked with a few kids and was well aware of the dangers of choking, but Cary is just learning to eat and she has poor oral skills.  Seeing that he was not going to get me to sing and dance for the joy of G-Tube installation he let me go with a prescription for reflux, constipation and tests ordered to track her digestion which is what I wanted in the first place.  I do have to go back in a month to see if she is growing, gaining, and not choking.

So I was a little mad (alright a lot mad).  Cary was sleeping after being up since 3 a.m. and I really needed to do something normal.  I didn't feel like scrapbooking (my normal love but I was too cranky and afraid I would mess up more than make nice things) and I was too full to feel like baking after eating a ton of red pepper hummus and crackers.  So after reviewing my options I decided to make art for the kids.  I made home made play dough.

If you are ever looking for the world's best art blog I highly recommend The Artful Parent.  She is one of my all time favorite blogs and I use her play dough recipe time and time again. If you go to her blog on the right hand side part way down is a directory and you will see play dough and clay.  Click on it and you will get the recipe and great ideas.  I tweaked it a bit for fall and Halloween.  I added Pumpkin Pie spice and tried to food color it orange.  Unfortunately, it ended up a bit more brown due to not enough food coloring and the pumpkin pie spice.  It makes a ton as you can see here.

I have two whole bags and it smells great!   After I made it Cary woke up.  I fed her and had to place her in her chair for sitting practice and to combat reflux she started getting fussy so for something new and different I put some play dough in front of her.  The goal is to get her eyes and hands to work together and to feel new textures.  It worked!!  She not only touched and felt it she ate it!!!

I was so excited to see Cary do something a "normal" kid would do.  A little frustrated that I can't get her that excited about solids but so happy to see this.  She explored and tasted for quite some time.  It was great!

Then I set up an area for Marvin.  I used random items as well as some old candy that was getting ready to go in the trash as we don't eat the stuff.

Here is the set up.  Note the shiny aluminum place mat.  Yup, I go all out around here.  Marvin was so excited.  He also insisted that I set up a work area as well and join him.  I was happy to do that.  I still felt the urge to pound on something.  So here is Marvin and some of the stuff he made.

Play dough and paints are favorites at our home as they can be very open ended and I feel he needs that after a day at school to decompress.  He spent about two hours with it and made pumpkins, monsters, and pretended to be a star on the Food Network with his own cooking show.

Here are a few things I made as well.

I found that the more time I spent with this the more normal I felt.  It was fun and I got to do normal family activities and feel not so grumpy.  I also know that art can be extremely therapeutic and good for kids and adults as well. So I am going to try to incorporate more art into our lives and more normal family activities in hopes that I can strike a good balance and teach the kids to explore their creative sides as well.  And just have fun for goodness sake.  We have not had this much fun in a long time and that is a mistake I plan on correcting.  I want to enjoy the little moments and have some happy memories so I am willing to put the time and effort into it.  It is so worth it!

Cary is One!!!

On Sunday my daughter reached a milestone that many didn't expect her to make.  She turned one.  My child defied odds and lived.  The doctors tell me she is a miracle.  I would have to agree.  Even though I am tired to the bone at the end of most days my daughter adds a new dimension and richness to my life that I was lacking before.  I feel that we are a complete family now.  It is a both a blessing and an awesome task.  I am busy and always on the run with two little people in the home.  Here are some pictures (I finally figured out how to get them on the stinkin' computer by myself!  Go me!)

The cake done by my most fantastic mother-in-law!  Bonus toy at the top (which she is deathly afraid of, but that is another post.)

Cary and baby Stella, a gift from Marvin.  Notice the matching binkies.  We were pretty much binkie free but then we decided to cut teeth like crazy so we are back on it again.  Luckily, it is getting better so she is going down on the use of it.

Aunt Heidi giving Cary a puppet show with a day glow dog hand puppet.  Who says I don't pull out all the stops for a fantastic party:).

Gramma got her a dolly as well.  Heidi insisted that she called it "Anna" .  It sounded more like Aranah with a binky in the mouth, but I know better than to argue with Heidi so Anna it is.  The girl is set in the dolly department now and only seems to want to play with balls and that day glow puppet.  Sigh.

All in all it was an awesome party,  I am so thankful that we got a chance to celebrate this very big milestone in her life.  And I hope there will be many more!

Finding Our New Normal

This was a quiet week.  By quiet I mean that the therapists came to us and we didn't have to leave the house.    I have to say that it was nice.  Too bad that I still have lots of doctors to see this month.

I did survive the endocrine doctor.  Cary is doing great and her pituitary gland has kicked into gear and is helping keep her diabetes in control.  Now we are on maintenance and we just see Endocrine every 2 months.  So that was great.

I even did something normal last weekend.  We met up with friends and got to go to the Children's Museum.  It was soooo stinkin great to do a normal family activity.  Marvin got to play with a friend and I got to feel normal.  Normal is such a good word.  And an even better feeling.

Then we were visited by Cary's new therapist team.  Speech came on Monday and liked what she saw.  PT came on Wednesday and made Cary do a ton of painful (for momma and baby) exercises.  She was able to really get Cary to work and insisted that I force tummy time at least 4 times a day.  We are working on it and Cary now is developing a healthy hatred of the exercises.  But she is doing it.  Vision will come bi-weekly and she came today and was really excited over how well Cary did.  She gave me lots of work to do with her and I will be stuck on the floor until I am about 100 at this rate.

So in between all of this we are trying to establish a new routine and a new normal.  It isn't easy.  It is hard to hear other parents talk about little Suzy's first step or little Tommy's words.  It is hard to look at "normal" kids and realize that yours isn't.

But then I stop and think.  I think about how the Endocrine doctor told me that Cary wasn't supposed to live.  How she nearly died in the hospital.  Then I realize that it isn't a race to see how soon she can do this or that.  It is a journey.  A journey that I need to enjoy.  Plus, who decides who is normal or not.  I certainly don't qualify as normal.  Neither does my husband or Marvin.  We are all "quirky" and I rather like us that way.

As Cary's first birthday approaches I look forward to celebrating with her and look forward to this exciting part of our journey together.  As a family.  The way it should be.