Spring Break

I remember a time when Spring Break meant doing NOTHING for an entire week.  Sleeping in, ignoring school work, hanging out with friends...

That is not what Spring Break is in our house these days!  My children, darling as they are, do not understand the concept of sleeping in.  In fact, they wake up EARLIER than normal for some strange reason!  There is tons of housework to be done - I will be honest here, and admit that I have overwhelmed myself with school, work and kids this semester, and my housework is paying the price for it.  I have laundry to catch up on - it seems never ending, even if it is half of what I was doing this time last year (since Miss Sunshine is now potty trained, no more washing cloth diapers.  Which makes me happy, and kind of sad, all at the same time).  The floors need mopped since it has been raining nonstop since Sunday and my dog simply doesn't understand the concept of wiping her feet (haha!).  I have a goal to finish one of my online classes this week so I don't have to worry about it for the rest of the semester.  I also have two papers I want to get written this week so I don't have to deal further with them as well.  And I need to catch up on listening to my online Nutrition class lectures as well as get to work on the massive project I have due in that class.  Add in to that the 23 hours I am working this week (including two shifts tomorrow - it's going to be a long day for all of us!) and it's just not the Spring Break I remember!

We are still waiting on a call back to schedule the date for our next clinic visit at Shriners.  We need to call and reserve a hotel room for our family reunion this summer.  We have to pay the balance to have our roof replaced.  The van needs a lot of work done to it.  I hate money.  And bills.  And being a grown up.  Sigh.  I just keep telling myself we just have to get through two more years, and then things will be a lot different.  Our income will more than double once I go back to work.  I think we won't know what to do with ourselves with that much money, hahaha!  It will be nice to be able to put money in savings instead of worrying about bills every paycheck, though.

This is turning into a novel of a post, so I'll come back with other posts later on updates on Miss Sunshine and Monster Boy.  They have enough news to have entire posts of their own too!

Wow

So time has totally slipped away from me!  It's amazing, really, how quickly things go these days.

I'm not sure if I updated on here or not, but we made a trip to the original ENT that Miss Sunshine saw for her cleft a while back.  At her 3 year well child check, I mentioned to our doctor that I was a bit concerned about the notes we had received from Shriner's classifying her with moderate hearing loss in her right ear.  Of course, this was all while she had a non-functioning tube in that ear, so I wanted to have her hearing evaluated again.  He was game to send me to an audiologist, but when he took a look in her ears, said he couldn't see ANYTHING but earwax! So off to the ENT it was, to get her ears checked out, see if the impacted wax could be removed and see if the tubes were still functional.  Miss Sunshine did beautifully at letting the ENT dig his little scoop into her ears, even though she was definitely not pleased about it.  He was able to get enough wax out to see her tubes, and they are both still in place!  This is now the longest a set of tubes has lasted in her ears.  So off he sent us to see if they are still functional, and they were.  Not only that, but she successfully passed a booth test for hearing in both ears.  It was pretty entertaining to watch her take it, but she did great.  He said normal range is between 5-15 decibels (I think that's what it was, maybe it was Mhz, I can't really remember now!).  Miss Sunshine tested at 10 in the left ear and 10-15 (because of her age, they do a range if there is some discrepancy, because children at this age are notoriously hard to get accurate readings on) in the right - so normal range in both ears!  Yay for good news on hearing - this is my major concern these days.  Her palate repair was so successful that we likely will not need further surgeries (although this is of course not a definite...) so most of my worry has been focused on the hearing.  Now that we have resolved that, I can relax a bit until our next trip to Shriner's sometime this summer... we will also have a follow up with our local ENT in six months as well, to make sure the tubes are still working as they should and we don't have further issues with the earwax impacting against the tubes.

That was pretty long and I do have more updates to make, so I will try to get back here soon to do that - I've had a post typed up since Miss Sunshine's birthday, I was just wanting to add pictures to it which I haven't loaded onto my computer yet, if that gives you any indication of how behind I am these days!

A mommy day

No, not a spa day or day off.  A Mommy day.  You know, one of those days where you realize your babies aren't really babies anymore?  Yeah, one of those days.

I spent the weekend reorganizing Miss Sunshine's bedroom.  In the process of doing that, I hauled out my storage tubs (one for each kid) of baby clothes in order to put a few of the items of Miss Sunshine's that I wanted to keep that were still in her room in them.  So, I decided to go through the tubs and see if there was anything I would be willing to part with.  I do this about once a year, trying to cut down on what I am saving.  Monster Boy's clothes have been pretty well cleared out - I don't keep much of his anymore, unless it has special meaning, like his soccer shirt (when he eventually outgrows it) or his school t-shirts.  I still keep quite a bit of Miss Sunshine's stuff, because it's so hard to part with things when they are little.  But I limit myself to one tub for each child so I don't keep too much.  The idea is that I have boy and girl items if we decide to have another baby.  And, once we decide we are truly done, I will keep only the most sentimental items, because I am going to make a memory blanket for each of the kids for their high school (or perhaps college, I may want to put some of their college shirts in there, who knows) graduations.

Anyway, back ot the topic at hand.  I was going through sleepers and onesies, and it hit me just how big my kids are now.  Monster Boy turned SEVEN in December, and Miss Sunshine will be THREE next week.  How did that happen?  Where did the time go?  It just doesn't seem possible!  I have baby fever in the worst way, and also have the knowledge that NOW would not be a good time to have another baby.  Which makes me a little bit sad.  But I know that it would be better to wait, until I am done with school, and we are in a better financial position, to have another child.  It puts a bit more space between kids than I really wanted to have, but it's what is best in the long run for our family.  So, we wait, and we see if time is ever really right to have another baby.  I pray that it is, as I know Daddy Mac does, because we both really feel our family is not complete.  But we will accept that this is our family and not love anyone any less even if we don't have another child.

It's amazing how reflective a tub of baby clothes can make you...

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!