Still trying not to be angry.

I'm still frustrated over people.  Total strangers whom I would never meet in real life, but who, through words or pictures or illustrations or whatever, have impacted my life.  And not in a good way.

I guess my problem is that I just don't understand.  One can claim ignorance, I suppose, but sometimes that feels like a cop-out.  If you are going to make a public statement of one kind or another, one that you know will most likely be highly controversial (and I'm sorry, but you cannot tell me that you didn't know that making a statement regarding abortion, or drawing a picture involving a birth defect is not going to be controversial...), wouldn't you take the time to educate yourself about it first?  I mean, really?

I don't make what I consider controversial statements on here.  But even the statements I do make, come from information that I gathered, either through the course of our own personal experience with cleft, or by my own research as I search for answers to my questions.  I don't pull things out of my hat, or left field, or make things totally up and expect people to not question why I said what I did or did what I did.  I hope that makes sense. 

Perhaps the truth is that really I am just hurt.  My daughter is PERFECT.  She is exactly the way that she was meant to be.  It may not be the way I imagined she would be.  It may not be the "perfect" that most people would expect.  But she is perfect.  Now that we are (nearly) three years in to this journey, I just can't imagine her any other way.  She wouldn't be my Little Miss Sunshine.  It took me a very, very, very long time (nearly three years!) to reach this point.  I, out of all of our family probably, had a very hard time accepting and adjusting to the idea of her cleft.  I'm not really sure what that was.  I imagine it probably had a lot to do with not knowing about it until she was born.  I'm a planner.  I always have been.  And I had a plan for this little girl.  And when she came, that plan got thrown right out the window.  Because that plan would not work for her.  And I just had a very hard time dealing with that.  It really messed up my whole world.  For a long time, I felt like a bad mom for feeling that way.  I felt like something in ME must be really messed up to feel angry, and sad, and a whole host of other emotions.  I felt guilty.  I know now that those are normal feelings.  It is normal to feel a loss when your child is born with a defect of some kind.  Because you plan for one thing.  And you get another.  And it takes time to make up a new plan.  And you need time to let go of the old one.  It's NORMAL.  So maybe I'm hurt by the fact that these people don't even take that pain into consideration.  That they don't see my daughter as perfect, as a gift, the way I do.  Instead, they see her as a punishment.  Or a joke.  A caricature.  But the truth is:  She is none of those things.  She is just my daughter.  My perfectly beautiful, perfectly funny, perfectly cute, perfectly crazy, perfectly spoiled, perfectly loving, perfectly perfect little girl.  I just wish that those people would take the time to see her that way, the way I do.

One year, maybe, people will THINK before they speak...

Once again, I find myself in a position of anger.  Anger at a person in a public position who, aside from being woefully uninformed, has used said position and made statements that are beyond hurtful to those with any kind of disability.

This actually occurred nearly two years ago, apparently, although I just learned of it today.  And what I learned sickened me.  No, it beyond sickened me.

I have long avoided using this blog as a platform of any kind.  I share things regarding our family life, our journey through raising a child with cleft, things I find interesting.  I tend to steer away from hot button topics like politics, simply because I just don't feel that this is the place for those things.  I have my beliefs.  It doesn't matter to anyone but me what my personal beliefs are, and I feel no need to shove those beliefs down someone else's throat.  I know not all people feel the same way that I do about anything, and I respect that. 

Tonight, I find myself in a position to bring up politics on my blog.  But, this is something that I simply cannot avoid addressing. 

Apparently, in 2010, Virginia State Delegate Bob Marshall gave a speech at an event.  The speech was a call for Virginia to stop state funding to Planned Parenthood.  In his speech, he said that children with disabilities were God's punishment to women who had abortions.  Yes.  You read that correctly.

Here is his exact quote, from cbsnews.com, from THIS article:

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically," he reportedly said. "Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children."

"In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord," he added. "There's a special punishment Christians would suggest."

 

He later posted a statement saying that what he said was misinterpreted.  (This is also discussed in the above referenced article).  I fail to see HOW what he said could be misinterpreted.  It seems very clear to me.

 

As the mother of a child that has a disability (whether visible or not, her cleft is considered a disability), I am extremely offended by this statement.  Regardless of your view on abortion, this is reprehensible.  I have never had an abortion.  I certainly have never even considered an abortion.  In fact, I became a single mother rather than make that choice.  Yet my daughter was born with a disability.  She is my husband's first born child.  This whole idea makes me sick.  Simply sick.

 

I have long been taught that abortion is a sin, since I am Catholic.  Regardless of what my church teaches on abortion, my church also teaches that Christians forgive.  That Christians love unconditionally.  That Christians should not judge, but should rather preach God's love.  THIS, this entire situation, this is NOT being a Christian.  I feel that it only makes matters worse that this man is a political figure, who makes these statements to the masses. 

 

I find myself at a loss as to how to educate close minded individuals like this.  Whether he posted an apology, recanted, or whatever, the fact is that those words left his mouth.  IN PUBLIC.  In a forum that was later spread worldwide courtesy of the internet.  And that there are people out there who will believe what he said.  The fact that he said it in any context is a true example of his ignorance.  The fact that he is spreading this ignorance is even more sickening.  How do you truly educate someone who says and thinks things like this?  I don't know that you can.  But, I can and will certainly let this man know, in no uncertain terms, how wrong I know he is.  He has recently announced that he will seek national office.  I hope that any of you who feel so compelled will reach out with me to let him know that this is not okay.

 

God does not punish his people for their sins.  God loves all his people, and forgives them their sins.  My daughter, with her disability, birth defect, whatever label you want to put on it, is NOT a punishment.  She is a GIFT.  A wonderful gift that we were blessed to have, not because God felt the need to punish us, but because he felt we were strong enough to care for her the way she should be cared for. 

Two years!

It's been two years to the day (today!) that Miss Sunshine had her palate repair.  I can so clearly remember that day like it just happened this morning.  The worrying, the stress, the waiting, the fear.  In the end, it was all worth it, and we came away lucky.  Miss Sunshine had what I would term an easy recovery compared to most.  She was drinking breast milk within two hours of coming out of anesthesia, and by the next morning was eating more than she had eaten in her entire life.  Her healing was picture perfect, no fistulas, she didn't fight the arm restraints, she did well with the syringe feeding.  All in all, we were so very lucky.  I have no doubt that the wonderful, amazing staff at Shriner's Hospital had much to do with that.

Miss Sunshine with Memaw immediately after surgery.

Not happy about being awake.

Miss Sunshine the day after surgery, asleep after breakfast.

Looking back, it's a wonder how well she did.  We flew home less than 48 hours after surgery.  Her restraints got lots of stares for a few weeks, as did her syringe feedings out in public.  But, in the end, we were blessed.  Now we have an almost-three-year-old who no longer needs speech therapy or any other services.  She is being released from care by Early Intervention, and she tested higher than any child has ever tested at her age on the cognitive portion of her evaluations.  She is developmentally delayed in the r/w speech pattern, but that is the only one that she tested beyond normal in, and the speech therapist believes that it is really already starting to resolve itself and she needs no further assistance with it.  

The weight on our shoulders has been great these last three years.  The tears, the fear, the acceptance, the searching, the surgeries, the worries... but now.  Now I look at my daughter, and I am so grateful for all we have been through.  It makes me appreciate things so much more.  I can't help but look forward to what the future brings. 

Miss Sunshine with her special cleft palate bear from Monte's Bears for Clefts

(If you are interested in donating for a child to receive a cleft bear of their very own - personalized with their specific cleft (whether lip or palate), go to Monte's Bears for Clefts to see how, or to sign up your child for a spot on the sponsorship list.  *I was not in any way compensated for this referral.  Miss Sunshine received her cleft bear from a generous sponsor several months ago.  I just personally think it is a wonderful thing that the team at Monte's Bears for Clefts does.)

Happy New Year!

Phew! The month of December sure flew by for us. Between school (for Monster Boy and I), finals, work, holidays, birthdays (Monster Boy is now 7 - guess I need to update that sidebar!)and just general craziness, it feels like we haven't had time to breathe in weeks.

We are having a nice, quiet New Years Eve here at home this year. Daddy Mac has been plagued with stomach issues the last few days, so we are doing a movie/game night with the kiddos. I'm kind of looking forward to it.

I'm excited to report that Miss Sunshine has been in underwear for 8 days now, with only 2 accidents - one of which was during naptime so it really doesn't count. She is doing great, finally! I'm excited and sad all at once. I'm not ready for my baby to grow up yet.

Monster Boy is doing great, too. Ready to get back to school and see his friends, but having a good break all the same. He got suitably spoiled for his birthday, and has been enjoying playing with all his new gifts.

I finished out my first semester back to school with a 3.93. Darn plus/minus grading scale - I got an A- in one class, which kept me from a 4.0. But I still feel like I did great this semester and I am feeling better than ever about my choice to go back.

Here is hoping that 2012 continues to bring happy news to our family (I will update about Miss Sunshine's IEP evaluation next post), and that it is wonderful for all of you as well! Happy New Year!

Breathe...

I can't seem to stay caught up on here.  I apologize for that.  (Not that I think that many people are reading or are really bothered by that, hahaha.)

I'm taking ten minutes tonight to breathe before it's back to the grind again.  Tomorrow starts our week of absolute insanity and it shapes up something like this:

Monday:  Daddy Mac works
               Monster Boy has school
               Mommy and Miss Sunshine have Mom's Day Out
               Daddy and Monster Boy have Boy Scouts
               Mommy has to study for Philosophy final
               Miss Sunshine goes to grandma's for the night
Tuesday: Daddy Mac works
              Monster Boy goes to school
               Miss Sunshine has Mom's Day Out
               Mommy has Philosophy Final
               The whole family goes to Monster Boy's school concert
Wednesday:  Daddy Mac Works
                     Monster Boy goes to school
                     Mommy and Miss Sunshine go to work at the nursery
                     Mommy has a Chemistry Final
Thursday: Daddy Mac works
                Monster Boy goes to school
                Miss Sunshine goes to Grandma and Grandpa's
                Mommy has a Psychology Final
                Mommy, Monster Boy and Miss Sunshine go to work at the nursery
Friday:  Daddy Mac works
             Monster Boy goes to school
             Miss Sunshine and Mommy go to Mom's Day Out
             Mommy and Miss Sunshine go for Miss Sunshine's IEP evaluation results
             Monster Boy and Miss Sunshine go to Great-Grandma's
             Mommy and Daddy Mac go to Daddy Mac's work holiday party
Saturday:  Daddy Mac works
                The whole family has Monster Boy's birthday party complete with roughly 20 7 year old guests
                The whole family goes to see Christmas lights with Aunt, Uncle and cousins
Sunday:  The whole family goes to mass
              FINALLY we get a day with no other plans.  Although I am sure something will pop up by then...

Are you tired?  I'm tired just typing it out!  This time of year is just total insanity for our family and it seems like we don't even get a chance to BREATHE until well after New Years.   Between all the school stuff, for both Monster Boy and I, all the work stuff for Daddy Mac and I, all the family Christmas get togethers, Monster Boy's birthday, New Years Eve plans, and all that fun, we are just go go go the entire month of December.   I keep telling myself things are going to get easier and every year they just seem to get busier.  One day soon, I know things will slow down, and then some crazy part of me will probably miss this craziness.  But for now, I'd just like a chance to breathe...

Family Time

In the craziness that is our new life with me going to school, working, Monster Boy going to school, Miss Sunshine going to Mom's Day Out and play dates, and Daddy Mac working 12 hour days six days a week, there is very little time in our lives for "family" time.

It's sad, really.  But, I also know it is temporary.  And come January, I will no longer have night classes, so that will make a huge difference in our time together (HOORAY!).

Last night, though, we had a little break.  Normally we go to dinner with my Grandmother on Fridays.  (Yes, my children are incredibly blessed and have not one, but THREE, living great-grandparents).  Last night, however, she had plans, so we had the evening at home.  I made dinner (baked pork chops and fries - because I was tired and it was easy!) and we all sat at the table to eat as a family (we ALWAYS eat together.  No TV eating in this house!).  After dinner, we got the kids in their Jammie's and then all headed downstairs.  Daddy Mac built a fire in the fireplace that we finally, after four years of living here, got around to having cleaned.  Then he popped up some popcorn for all of us.  And we snuggled in, with Christmas tree lit and fire burning, on the couches together and watched "The Polar Express".  It was wonderful.  The kids had a great time and it was so nice to just have a bit of bonding time together.  Then we sent the kiddos off to bed, and Daddy and I cuddled back on the couch by the fire and watched "A Christmas Carol".  We don't get to do this nearly often enough.

I think that family time is always important, no matter the size or make up of your family.  After all, what can be better than spending time with the people who matter the most?

I'm trying...

I've started at least three blog posts in the last few days.

None of them really seem to go where I want them to.  I tried a post about what I am thankful for, but it seemed so syrupy and sappy and, well, just NOT what I wanted to say.  I mean, don't get me wrong, I'm thankful for a lot of things in my life, but I just couldn't seem to get what I wanted to say to come out right in words.

So then I started a general update post.  But it just didn't seem to fit the bill either.  I tried again, and yeah, no dice.  I'm not sure what the issue was with that, but again, it just didn't seem to say what I wanted it to.

So now you get this.  Random musings about what I was TRYING to say and can't.  I'll toss some quick updates in there, and then I'll get down to what has really been on my heart these past few days.

Life is pretty much the same as always here.  A struggle to find enough time to fit in everything that needs to be done in our days.  In some ways, I like the insanity, but in others, well, I miss the ease that life had before. But, I know these days are worth it, and we will manage, as always.

Monster Boy is doing great in school.  Parent Teacher conferences went well - he is ahead of the class in pretty much everything, which we already knew.  His teacher asked if we had any ideas on how to keep him interested since he is so far ahead, especially in reading (he is reading at a third grade level - in first grade!).  We are brainstorming ideas but haven't really come up with anything that we think will fit well into the set up she has for his classroom, so suggestions are welcome!

Daddy Mac is working hard as always.  I don't know what I would do without that man.  He is an amazing husband, father and person in general.  I certainly wouldn't have survived the last few months, let alone the last few years, without his love and support.

I am as crazy busy as ever.  School is going well - I'm pretty much kicking butt in all my classes, which makes me very happy.  But, I am ready for this semester to be over.  And, while I am taking a full course load again next semester, two of my classes are online, and two are in classroom.  Which means less time on campus, and more time with my kiddos.  Also, no night classes next semester, which I think will make a HUGE difference in how busy I feel.  Fingers crossed that I can continue with the good grades after this semester is over!

And let's not forget Miss Sunshine.  She is crazy.   Seriously.  She is at THAT stage.  You know, that fun stage right around the age of three where kids are nothing but attitude?  Yep.  That stage.  Sometimes all I can do is laugh at her, because she is just so funny when she is trying to cop her little attitudes with me.  Of course, I make sure she can't see me, because that would just feed in to the attitude.  We are STILL trying to potty train.  I have been blessed with extremely stubborn kids.  And, apparently, extremely stubborn kids are not good potty-trainers.  I know she knows what to do.  She can go days, several in a row even, with zero accidents.  And then for a week it's non-stop accident after accident.  I just don't even know what to do anymore.  I had hoped to have some success this long weekend with getting her in to underwear, and yesterday thought I had it.  She went the ENTIRE day with no accidents, telling us when she needed to go potty, just doing great.  And today?  Well, today, she pooped in her pants.  Not just once, but twice.  I just don't even know what to do with her.

And then, I realized this week that we are nearly TWO YEARS post-palate repair.  Two years!  That's just crazy to me.  I can't believe it's been that long.  We have been so incredibly blessed in the last two years.  This week, she has her evaluation with the school system for an IEP.  It's a two day process - they will do testing, they will watch her interact with other children, they will watch her interact with Daddy and I, they will do lots of things.  I have high hopes that they will release her from care - she is actually ahead in speech now, we don't notice any unusual behaviors that might indicate other developmental delays, and I think that she just no longer requires services.  BUT, and this is a big but, I simply don't know.  And I won't know until after these evaluations are done - which makes me very nervous.  So, I try to focus on other things.  Like the potty training... So that I don't spend countless nights worrying myself to death.

I will update after her evaluations, and have some ruminating for you all on life with her cleft (including some links to some pretty cool sites that I HOPE you will take the time to check out!).