The Cleft of the Matter

A mommy day

2012-01-24T13:38:00.000-06:00

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.

2012-01-18T17:10:00.000-06:00

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...

2012-01-16T20:50:00.001-06:00

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!

2012-01-14T17:47:00.000-06:00

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!

2011-12-31T18:52:00.000-06:00

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...

2011-12-11T21:39:00.001-06:00

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

2011-12-03T12:32:00.000-06:00

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...

2011-11-27T21:24:00.000-06:00

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!).

Changes, again.

2011-11-06T20:53:00.000-06:00

I've made a few changes on the blog. Minor ones, that you may not notice right away. But, if you have been here more than once, you might take a look around, and let me know what you think.

I plan to update the banner soon, with newer pictures and graphics. Of course, things like that take time, and time is a precious commodity in our house these days.

I meet with my adviser this week to plan my schedule for next semester. Some big changes are going to come with this meeting. Depending on if I can work it out to take a certain class online, not too much will change. But if I can't, I have to completely redo my schedule, including the work schedule. Which means less work, less money and things will be even tighter. And it means that we will likely have to put Miss Sunshine in some type of full time care, rather than the Mom's Day Out programs we have been able to utilize so far. Which means things will be even tighter with money. Fingers crossed that things work out the way I want them to.

It's nearly time for Christmas - and with Christmas comes birthdays! Both of the kid's birthdays are fairly close to Christmas - so soon I will no longer have a 2 year old and a 6 year old - I will have a 3 year old and a 7 year old.

Miss Sunshine is now on yearly visits to Shriner's! Hooray for progress! I think one of the tubes that we just had replaced is blocked again, I will be taking Miss Sunshine in for a hearing test soon to see what is going on there. We had our first local dentist visit, and Miss Sunshine does have a pronounced under bite - not unusual in a child with cleft palate. We did expect this, as her palate is likely growth-restricted due to the scar tissue from her palate repair. It should grow somewhat normally, but most children who have palatoplasty (palate repair) have a pronounced under bite due to a smaller palate and roof of their mouth. What this will mean in the future, we aren't for sure. Obviously we are talking palate expansion. Whether they will be able to do this with orthodontic devices or whether it will require additional surgery we just won't know until she gets older. She is still missing the right upper canine - her left one finally decided to make an appearance last month. She does not have all of her two year molars yet, so there is still hope that her canine will eventually show up. They tried to take xrays to see what was going on, but she just couldn't hold still enough. We will try again in March when we go back.

We had parent teacher conferences for Monster Boy - and he's doing GREAT! He is reading at a third grade level (he is in first grade this year) and is ahead of his class in both math and science. We are having some issues with fidgeting, talking out of turn and not fully listening to instructions, but we have put a plan in to place we hope will help with some of these things. I think, and his teacher agrees, that a lot of the attention issues are due to the fact that he is just so far ahead of the rest of the class. So, when he finishes work up early (which according to his teacher is pretty much daily), he will get another worksheet on the topic they are studying, to hopefully allow the rest of the class to finish before he hits the "bored stage" where he starts messing around. He lost tooth number four this weekend, and was super excited that he pulled it out all by himself (this is the first one he pulled on his own!). It's funny, when your kids start losing teeth, their baby teeth seem so small in their mouths, and yet, when the adult teeth start coming in, they seem so HUGE! My baby boy is growing up so fast, I wish I could just freeze time some days.

Daddy Mac is doing well. He fell down the stairs on Thursday, moving a table, and hurt his back. Not badly enough to warrant a trip to the doctor, or so he says, but enough that it's causing him discomfort and he's having a hard time sleeping in our bed because it's too soft. He slept most of the night last night on the couch after falling asleep during a movie (I didn't have the heart to wake him) and said that it felt a bit better today. Hopefully he is telling the truth and not just saying that to, *ahem*, get me off his back. (Okay, okay, bad pun, I know. I just couldn't resist.)

I hadn't really intended to write a novel tonight. But, I guess it was time to catch you up on life in the Mac household. Hopefully I will be able to post a bit more once the holiday break gets here (although, as a mom, it seems like the phrase "holiday break" is an oxymoron - anyone else feel that way?). And, if my schedule works as I hope it to (again, all dependent on one class and whether or not my adviser will allow me to enroll in it as I am missing one prerequisite) then I will actually be taking fewer hours next semester, and should have more time on my hands. We will keep our fingers crossed that things work out the way I'm hoping for!

Exhaustion

2011-10-13T14:31:00.000-05:00

I knew going back to school would be hard work.

I vastly underestimated how exhausting it would be.

I do know that it is worth it. This is going to mean great things in the future for our family. But days like today, it's hard to keep that in sight.

Miss Sunshine is napping right now. I should probably have taken advantage of that fact and done some napping myself. Instead, I decided to go through Monster Boy's drawers and start the transition from summer to fall. BIG mistake. Why is it that small boys are so hard on furniture? I've spent the last twenty minutes fixing his dresser after discovering broken tracks on two of his drawers.

I have the decorating bug, and no time to decorate! I want to move Monster Boy's room around again. I want to move Miss Sunshine's room around again. Things just never seem to really "fit" the way I want them to after I move their furniture. I want to repaint the kids bathroom - it's a sage green and lately it just feels dingy to me. I'm thinking a warm, buttery yellow will brighten it up in there nicely. Of course, finding time and money to paint... well. It's a thought at least. I want to replace the flooring in Miss Sunshine's room. The whole house, really, but at this point that is not feasible. Miss Sunshine's room is a priority though. Her carpet is sorely in need of replacing. And it's a small room. We want to do hardwoods - but know we can't afford it, so we will settle for laminate. So, I'm thinking we will start with her room, and just do one area at a time until we get it all done. Her room first, then Monster Boy's. Then the hallway, then our room. The living/dining/kitchen will have to be done last because it will have to be done all at once. And perhaps even the hall will have to wait until then. But for now, Miss Sunshine's room is the priority. Hopefully we'll be able to pick some stuff up by the end of this month. That is our goal.

Things are tight right now though, so it just may have to wait, much as we don't want it to. Right now, we have to concentrate on our needs, not our wants. We are trying.

And all of that, plus time with the kids, time for work, time for school, time for cleaning and studying and laundry and... well, you get the idea. Add all of it up, and you get one very tired Mommy. And it's only going to get crazier from here.

Score!

2011-10-01T18:30:00.000-05:00

Monster Boy had soccer game number three today. I see great improvements in his playing with every week that passes. And today, best of all, he scored his very first goal! He did great today, and I was so very proud of him.

Miss Sunshine has assessments coming up in a few weeks. She is in the Early Intervention program through the state of Kansas for mostly speech, as she has no other developmental delays. She's not currently speech delayed any longer, but they have been continuing her services since she qualifies due to her cleft. The way EI works in Kansas is that up to the age of three it's handled through one company. After the age of three, the school system takes over. Since Miss Sunshine will be three this coming February, it's time for her to transition. They will do full evaluations in all areas on her - speech, eating, psychological, everything. I have no doubt that they will find her developmentally on track and recommend little to no services, but you never know, and these kinds of things are so nerve wracking.

I am excited to say that I am currently pulling a 3.92 in school (It would be a 4.0 but my university uses a plus/minus grade scale and I am 1% point off for an A in one class, so I have an A- instead, which is lower than a 4.0). I am feeling GREAT about my decision to go back to school after finding this out. I am more confident now, despite some difficulties in every day life, that this was the right decision to make for both my family and myself.

Things are about to get crazy busy around here so I probably will not be around as much, but I will still try to keep up.

Blur

2011-09-26T10:27:00.000-05:00

The past four days have been a blur. I barely remember anything.

Thursday morning, as I was getting the kids and I ready for school, my phone beeped. It was a text from my stepmom, telling me my cousin was in ICU. I immediately texted back, asking if I should skip class to come up there. She texted me back that it was up to me. I had a review for an upcoming exam (which is now tomorrow) and several assignments due, so the entire drive to Monster Boy's school was filled with me mentally arguing with myself over whether or not I should go to class or the hospital. (I should clarify that this cousin has multiple health problems and this is not the first time he's been hospitalized for things). I had finally decided I would try to squeeze in a quick trip to the hospital (conveniently located across the street from Monster Boy's school) and then head on to class. Well, as I was pulling in to the parking lot, my phone rang. It was my dad. And he was crying. And he told me I should come NOW. That is NEVER a good sign. Ever. I can probably count on one hand the number of times I have actually seen my father cry. So, there I am in the parking lot with Miss Sunshine, knowing I can't take her in to the hospital, trying to figure out what to do. My dad says he will wait outside with her while I go in. I call Daddy Mac and ask him to come get her - I am already in tears at this point and haven't even made it inside the hospital. He leaves work and comes to get her as I head downstairs. I get to the ICU and every single one of my family members is there, and crying. This is not good. The next few hours passed in a blur, but mainly I remember praying. HARD. For any kind of miracle God could give us, but mostly to please save my cousin. And then, just when the doctors were saying no, he turned a corner. He is still in critical condition, and as of last night was still on a ventilator (although they are supposed to try taking it out today). But, he is still alive. And four days ago, they told us he wouldn't be. Each day he gets stronger and stronger. Each minute is a miracle for us.

I have never believed as much in the power of prayer as I do now. Because this weekend, I saw it with my own eyes.

Remembrance...

2011-09-11T21:45:00.000-05:00

All day today, I remembered.

I remembered being woken up by a phone call from a friend, asking if I thought a mutual friend of ours was okay. I was ALL kinds of confused. And then she clued me in - the first tower had been hit at the World Trade Center, as well as the Pentagon. Our friend worked at the Pentagon (she was not there that day, thankfully).

I remember heading to class, listening in horror to my car radio as the second tower was hit.

I remember coming out of class, going to the student union to get a drink, and seeing everyone standing in silence and shock, watching as the towers fell.

I remember going to class where my professors were in as much shock as the rest of us, and pretty much just sat there for the hour of time we were there.

I remember the days of fear that followed - my sister was supposed to be on a flight that day to come home for a visit - obviously her flight was canceled. She made it home a week later, and I remember being nervous the entire time I knew she was on the plane.

I remember life before 9/11/2001. And I know life after.

My children will never know a life where that day does not exist. It was before their time, but, much like Vietnam was before mine, they will hear the stories, they will see the pictures, and they will grow up knowing that their world is forever different because of what happened.

And today, ten years later, I still remember. I will ALWAYS remember.

I have a ladybug in my EYE!

2011-09-05T20:58:00.000-05:00

Miss Sunshine has developed quite the imagination (and personality) lately. We had a very interesting conversation on my way to work the other day, and it went something like this:

(I am driving and Miss Sunshine is in her car seat behind me.)
Miss Sunshine - "Oh no! I have something in my EYE!"
Me - "Something in your eye?? What is it?"
Miss Sunshine - "I don't know. It's a LADYBUG!"
Me (trying not to laugh) - "A ladybug?! How did a ladybug get in your eye?"
Miss Sunshine - "I don't know. It's a BABY ladybug."
Me (still trying to hold in the laughter) - "A baby ladybug, huh?"
Miss Sunshine - "Yeah. Don't worry, he's not scawy"
Me (little giggles are beginning to sneak out) - "Oh, well, I'm glad he's not scary then."
Miss Sunshine - "Yeah. Don't huwt him! Don't squish him!"
Me (giggling harder) - "No, we wouldn't want to hurt him. That would not be nice."
(I have reached the gym, and open the door to take her out)
Miss Sunshine - "Be caweful. He is scawed of you!"
Me (cracking up at this point) - "He's scared of me? Why is he scared of me?"
Miss Sunshine - "I don't know, but he is scawed. You must be scawy. Be nice, okay Mommy?"
Me (almost in tears at this point) - "Okay, I'll be nice. Let's put him down now so we can go to work, okay?"
Miss Sunshine - "Okay. I put him wight hewe, okay? You stay hewe baby ladybug. I see you later. But don't get in my eye again, okay ladybug?"

Sigh. That was the best day I've had in a long time.

It is that time of year again!

2011-09-01T19:15:00.000-05:00

September is Craniofacial Acceptance month!

I'd like to post a note that I posted on Facebook for our first Craniofacial Acceptance Month. I feel like so much of what I posted then still applies now...

We have joined a group called the Children's Craniofacial Association. Averie's cleft palate is considered a craniofacial anomaly. The CCA has designated September as Craniofacial Acceptance Month, and I am trying to help get the word out. There are so many different craniofacial defects, and while we are blessed that Averie's defect is fully correctable, so many of these kids will go through difficult and painful surgeries, recoveries, and even ridicule over the course of their lives. I think it is important for everyone to spend a little time educating themselves about craniofacial defects and what they could do in their area to help. You can visit the website ccakids.org for more information about their work and the types of anomalies they provide assistance for. They are also selling bracelets similar to the Live Strong bracelets as a fundraiser. If you are interested in purchasing a bracelet (for $1 each), please feel free to contact me. They are available in five different colors - purple, royal blue, lime green, teal and orange. Help us spread the word!

You can find more information on the Children's Craniofacial Association HERE.

It would mean a lot to us and our family if you would all take a few minutes to just check out what the CCA is all about, perhaps even consider a small donation, or take the time to educate someone else you know about what our children face daily.

More potty frustrations...

2011-08-27T10:25:00.000-05:00

I hate potty training. Honestly, I despise it with every fiber of my being. It is hands down my least favorite part of parenthood.

I have been blessed (or cursed, depending on how you want to look at it) with EXTREMELY stubborn children. They are both very much the "dig in your heels and refuse to budge" type of kids. Monster Boy took nearly a year to fully potty train. Not because he didn't "get it", but because he simply didn't want to be bothered to stop whatever it was he was doing to actually GO to the bathroom.

I'm quickly discovering that Miss Sunshine is stubborn in a whole new way. She is excited about going to the bathroom, and does very well in underwear when we are out and about. However, this child will NOT poop on the toilet. Why? I have no earthly idea. She doesn't hold her poop like many kids will, she's not afraid of the toilet or pooping on it that we can tell. She just won't do it. She will stand there right in front of me and poop in her pants thirty seconds after I have taken her off the toilet and telling me she didn't need to poop. I simply don't know what to do at this point. I don't want to put her back in diapers because I'm afraid we will lose all progress we have made with pottying (little as it is - out and about in public she stays dry perfectly find. At home is another story) and I don't want to have to completely start over.

I really wish there was an Easy Button for this...

It's Potty Time!

2011-08-24T09:01:00.000-05:00

We are potting training here in these parts... Miss Sunshine is somewhat motivated - she likes her big girl panties and wants to wear them often. However, she still does not tell us when she NEEDS to go. She will go if we tell her to. And sometimes, but pretty rarely, she'll come running up and tell me "I needa go potty!". But often, if I'm not right there telling her to go, she'll just go in her underwear. And I have yet to successfully get her to poop on the potty. SIGH. Have I mentioned that potty training is my least favorite part of parenthood?

Monster Boy is doing great at school. His class was mixed up a bit, and he's sad that a few of his friends from last year aren't in his class. But, some of his friends from before school are in his class this year, so that helps. He LOVES his new teacher. He has to give her a hug every day at the end of school - it's so adorable. The little girls are already fighting over who gets to sit by him at lunch and who he is going to play with at recess (at least, according to him they are...). I'm going to be in trouble when he gets to high school, I can already feel it.

I've made it through my first two days of classes - so I have been to all my classes once. I plan to sit down this weekend and figure out an action plan for studying and such - I expect I will be spending quite a bit of time hanging out at the Starbucks by our house so that I can have uninterrupted study time. But I wanted to get through the first week of classes and see how things panned out there first. I'm still pretty nervous - I have to take Chemistry this semester, and honestly, science has never been one of my strong areas. It's feeling pretty daunting - although I do like my professor and hopefully that will help. My other classes I feel pretty confident about - they are right up my alley and I know I can do well. I think if I can get through the first round of tests with high scores, I will feel much more confident about this semester.

Daddy Mac has been wonderfully supportive through all of this and I cannot thank him enough for how awesome he is. His volleyball should be starting up again soon, and I know he is looking forward to that. It will be good for him to get out of the house one night a week, especially since I have night classes two nights a week and he's going to be on his own with the kids until after bedtime those nights.

That's life in our house for now!

The Final Countdown.

2011-08-15T17:28:00.000-05:00

T-Minus one week and counting until I am officially a student again. I'm wondering why in the world I am so nervous about this. I'm not sure if it's the thought of being so much older than the other students in my classes, or what. I'm going to be a wreck the first day, I am sure.

Monster Boy starts school the day after tomorrow - I discovered last night that he is nervous as well, and I'm beginning to be more nervous for him. He seems to be feeling a lot of pressure to do good in school this year. I'm not certain where this feeling is coming from, because we have worked hard to reassure him that as long as he tries his best, we will be happy no matter what. I think it's likely because of all the people telling him how smart he is that he is feeling this pressure. The reality is, my child is extremely intelligent. At the end of Kindergarten he was testing close to second grade level in reading skills and comprehension. He can complete some second grade level math, can calculate monetary amounts, tell time, and do all kinds of skills that are well above a child who is just now entering first grade. I have no worries about his grades. Rather, I worry about whether or not he will find school stimulating enough, leading to behavioral issues. Add to that the fact that we still don't know who his teacher will be, and which students will be in his class (there are two K's and First Grades at his school - I am guessing that they will mix the students up a bit this year, and I worry about how he will handle this, even though he does know all the kids in his grade). Monster Boy has never done well with change, and I fear this is an issue we will face each year at the start of school. He will start counseling up again once school starts - in fact, I emailed his counselor today to ensure that he will be added to the list. I know that she will help him with coping skills for change and such. I hope that things will get better as the year progresses, much as they did last year. Only time will tell.

Miss Sunshine will be starting Mom's Day Out the first of September. I am also nervous about how she will do. She needs this - she is literally attached to my hip, and she needs to be exposed more to being away from me. I do think this is going to be very difficult for her, however. That is why we chose the Mom's Day Out program rather than a daycare setting. It is a teacher she already knows from going to work with me, an environment she is used to, and smaller class size. Plus, it's only five hours two days a week, so it is not overwhelming for her. I hope to be able to work my schedule next semester around this as well, so that I can continue to utilize the program (They do not offer classes Monday and Wednesday, so if I have to take classes those days we will have to put her in daycare.).

The next few weeks are going to be big changes all over the place in our household. I hope we can deal with them all well!

Being grateful.

2011-08-13T00:48:00.000-05:00

I have a tendency to approach life negatively. I have never been a glass half full kind of person, although I have often wished I were.

Some days, it's like a black cloud hanging over me. I have battled depression for many years now. I went un-diagnosed for many years, was finally diagnosed after Monster Boy was born, felt I was on the road to recovery, was at a GOOD place for the first time in I can't remember how long. And then Miss Sunshine was born. And we found out about her cleft. And I spiraled nearly out of control with grief and depression. I blamed myself. Let's all be honest here - any mother of a child who has any kind of medical issues, be they visible or not, blames themselves in some way. Whether it's a "What did I do to cause this" or a "What didn't I do enough of to prevent it?", those thoughts creep their way in. I had a very hard time dealing with Miss Sunshine's cleft, for a long time. I latched on to the inability to breastfeed her and manifested all of my grief, my pain, my anger, everything, in to that. I cried myself to sleep so many nights I can't even begin to count them for you. I didn't even FEED my own child for nearly three months. Honest truth here - I couldn't. I was not strong enough to do it. Well, and for the first three months, every time she ate, I was hooked up to that stupid breast pump and literally couldn't feed her myself. And I cried, bawled, so hard the first time I gave her that bottle. I lost what little sleep I could have had over her weight, the way she ate, her hearing, her ears, her surgeries, everything. I hate, despise, that aspect of her cleft. See, with Monster Boy, I went through a rather intense emotional journey during my pregnancy with him, and I never really got to enjoy my pregnancy. I still feel robbed of that. But his infancy. Oh, how I reveled in being a mother, in holding him, nursing him, everything. He was a joy and in some small way that helped make up for the strain of my pregnancy. With Miss Sunshine, I was able to share in my pregnancy with Daddy Mac. We were both able to be excited, and enjoy, my time being pregnant with her. But her infancy. I still feel robbed of the excitement of that. And then, I feel guilty for feeling robbed. But, I'm being honest here. Nobody wants to watch their child struggle, to deal with surgeries at such a young age, to know they hurt and that you had no choice but to willingly put them through pain. It's heart wrenching.

But today. Oh, today. Today, I found joy in my child. It was nothing spectacular, or exciting, or even new. But today, after work, after nap, Miss Sunshine was running around in all her totally-excited-crazy-two-year-old glory. Talking up a storm, laughing, playing with the dog, with me, with anything and everything she could get her hands on. And I looked at my little girl, and I realized, she's not my baby anymore. She's growing up. She's beautiful, smart, funny, and only TWO! And oh, how much I feel I have missed out on, being depressed, and stressed, and sad, and unhappy. I don't want to waste another minute being that way. Logically, I know, I will. But for now. Oh, for now, I'm going to be grateful for this journey. It is one I never would have imagined I would have taken, but I am all the better for it. And so, today, I sat Miss Sunshine down on my lap, and I played with her hair (it is amazing how I can't get this child to sit still for a simple pony tail, but an intricate design involving a dozen teeny tiny hairbands and ponytails and she sits like a statue) and I painted her nails (Thank you, Piggy Paint, for an all natural, non toxic nail polish safe for small children!) and her toes, and I laughed and I giggled, and I hugged her, and I held her, and I loved her. And tomorrow, it will be Monster Boy's turn. Well, not the pony tails or the fingernails, but you get what I mean. I'm going to strive to be grateful for what I have, instead of worried over what I don't.

These last days of summer

2011-08-09T13:11:00.000-05:00

I can't believe summer is nearly gone. Monster Boy goes back to school next week, and I follow the week after. Miss Sunshine will start attending the Mom's Day Out program at the gym I work at on my school days, rather than full fledged daycare. This is a good option for us financially, as well as being a good transition for her to me being gone. Next year, she will start preschool at the same school Monster Boy attends (I was pleasantly surprised to discover they have 3 year old preschool!) and the second semester will go to preschool and daycare afterward, as, if all goes as planned, I will be starting my clinicals and she will need full time child care.

We are spending this week getting up bright and early to get back in to school routine. Which is SORT OF working. Monster Boy is getting up bright and early at any rate. We have decided he is old enough to need to bathe daily now (he has eczema, dry skin, and overly sensitive skin all combined, so up to now we have been bathing him every other day to avoid drying his skin out too much), and gave him the option of showering at night before bed (apparently he is too big for baths now, or so I have been informed!) or in the morning before breakfast. He chose morning, so he has to get up half an hour earlier than last year. So, Daddy Mac wakes him up before he leaves for work, Monster Boy hops in the shower, eats his breakfast, brushes his teeth (which I now have to monitor as he has started trying to avoid actually brushing by simply running water in the sink for a minute or so to try and trick us in to thinking he actually BRUSHED) and get dressed, and then off to school we go. Or, will, once school actually starts. He has done well the last two days with getting out of bed without fighting. Me, on the other hand, I have not done as well. I'm trying to make myself get up before he does to exercise but have failed miserably. Instead, I get up when he does, help with breakfast as needed (he prefers a small breakfast like yogurt or granola, which he can manage himself, but sometimes likes oatmeal or something that requires cooking) and get in to gym clothes so that we can head to the gym once Miss Sunshine awakes - or, starting next week, once we drop Monster Boy off.

I'm ready to get in to our new routine and see how everyone does with Mom going back to school - including Mom!

She is done with surgery!

2011-08-03T13:33:00.000-05:00

Everything went great. Right up until she woke up!

In reality, our morning started off bright (or dark, really) and early at 4:30. We headed up to the hospital, and the entire drive all she would say was "I hundry" or "I need my cuppy". I knew it was going to be a long morning. We got checked in, and she did not want to put on the hospital gown. So we had tears over that. Then we started and restated Tangled about ten times as she would stop it, say she was done, then five minutes later want to watch it again. They took her back at about 7:30. They had to carry her to the operating room since she refused to ride on the bed. They paged me about fifteen minutes later to tell me it was done. I met with her surgeon, who told me he went with a larger size tube in her ear to see if it will last longer. He did wind up replacing both tubes, but only the right one is the larger tube, as her left tubes have lasted much longer. He did say there was no fluid in her right ear when he went in, which was a surprise since she failed a tympanogram just over a month ago. He said sometimes they will get an air bubble from the anesthesia, and sometimes it means the muscles of the palate are beginning to function, so it is possible this will be her last set of tubes! That is by no means a guarantee, of course. And even if they are, there is a possibility of other procedures being necessary. We really just can't know until we get there.

Miss Sunshine was NOT a fan of the anesthesia. I could hear her screaming from about two hundred feet and two brick walls away, which was hard for me. She continued to scream, cry and throw fits of epic proportion for another hour until we got the all clear to eat and drink. A cup of milk and a donut later and she was good, and has been going nonstop ever since. We have another two hours here before we head to the airport, so it has been a LONG day, but the end is in sight!

In Chicago

2011-08-02T22:25:00.000-05:00

Well, Miss Sunshine and I are here. We survived a very long day, are in bed and ready to rest up for the even longer day we are facing tomorrow. We have to be at the hospital at 6 am, which means we have to leave the hotel by 5:15 am, which means we have to get up at about 4:30 am. Surgery will probably start around 8, if it is anything like last time. It shouldn't take long, and then we just wait for her to recover from the anesthesia. Last time she did run a fever afterwards, and we nearly missed our flight home as a result. So this time I had them schedule us for a late flight, just in case. Which of course means she will probably be fine, we will get released early, and I will be stuck for hours at the airport with a tired, cranky toddler. I am hoping that they will let us stay at the hospital long enough for her to get a bit of a nap in, since I know that will not happen at all once we hit the airport...

I will update after surgery tomorrow, but for now, I had better get some sleep myself...

Test

2011-07-25T08:29:00.000-05:00

I'm trying out posting from my phone today, so bear with me. My phone really likes to randomly correct words into strange choices, so if a sentence all of the sudden makes zero sense, now you know why!

We heard from Shriners on Friday, and Miss Sunshine and I head back NEXT WEEK (gulp!) for her ear tube replacement. It will be another up and back trip - nothing like having to fly with a child who literally had surgery that morning. But, as far as surgeries go, this is a fairly minor procedure. And we've done this routine once before, so I'm sure things will be fine. We were also able to space out our flights fairly well, so she will have lots of time to rest and recuperate at the hospital before we head out. Last time, she spiked a fever after the procedure, so I have my fingers crossed that we don't encounter that again. Of course, if we do, what better place to be?

Enrollment for Monster Boy is this week, too. I can't believe he is already in first grade! He is so ready for school to start up again. He has been going stir crazy lately. It has been so hot here that I haven't been able to let the kids play outside, which has been rough for him especially. Hopefully it starts to cool off soon so they can get back to burning energy the good way.

Waiting for the rain...

2011-07-18T22:06:00.000-05:00

Literally and figuratively.

It is HOT HOT HOT here in the Heartland right now. Like, triple digits for going on three weeks, with no end in sight hot. Miserable hot. There is a song by Seven Mary Three called "The Oven". It's about the state I live in. And it is a perfect description of the weather here right now. It literally feels like you are standing in an oven when you go outside. Add to this horrendous heat a significant lack of precipitation, and you have every person in the state holding their breath and begging for rain - which is not in the forecast any time soon.

Here around our house, we are also "waiting for the rain". I don't know about Daddy Mac, but for a few weeks now, I feel like storm clouds have been building over us, waiting to unleash their fury. If you've read my blog before, you know I frequently refer to our trying times as storms. I have a feeling when this one hits, its going to be a doozy.

I don't even really know how to explain why I am feeling the way I am right now. Sure, things are tight, money wise. But no tighter than they were a year ago at this time - in fact, probably less so. I know that sometime things will start to level out, as they always do. We always make it through, one way or another. Health wise, we have all been doing well. I don't know why I have this feeling, I just do. It's like waiting for the other shoe to drop. Or some other tired old cliche. Or waiting for the storm to hit, as I like to say.

I'm trying to "let go and let God". (Wow, I am just FULL of those cliches today, aren't I?). I'm trying to have faith that things are not going to be as bad as I have imagined or built them up to be. Perhaps it is all the changes approaching us - nerves about my going back to school, about finding child care for Miss Sunshine, about how Monster Boy will do in First Grade as opposed to the more relaxed atmosphere of Kindergarten, about how the tsunami's in Japan have affected the car industry and what that might mean for Daddy Mac's job... so many things going on and running through my head right now, so that I can't seem to calm my thoughts down and just breathe. I have never dealt well with stress, and lately it feels like I am stressed to the max. And I'm just not sure what to do about it, because none of the factors contributing to my stress are tangible things that I can exert any control over. I'm trying to get to a place where I can calm myself, maybe head off the impending storm, or at least take adequate cover. But since I don't really know what it is that I am stressed out about, it's kind of hard to do that.

Daddy Mac is very much a "take it one thing at a time" kind of person. You know, those people who "don't stress over it because stressing over it doesn't change it"? I am SO not one of those kind of people. And I know he means well, but because he's not, he just really doesn't understand me right now. He tries, with all his heart, and I know it bothers him that he can't "fix" whatever I think is wrong for me, but he just can't because I don't even know what it is that is wrong, much less how to fix it. It's just one of those things I have to weather on my own. I know, once we get settled in to our new routine, that things will seem better. It's just the getting there that has me so worked up.

Back in school

2011-07-14T15:34:00.000-05:00

Well, it's not really back to school time here yet. We have another month before that hits, although enrollment for Monster Boy is this week.

But really, I'm talking about myself. After much thinking, discussing, and even praying, we (meaning Daddy Mac and I - we are a partnership so we make major decisions together as a team) have decided that going back to school is the best option for me at this point. I met with an adviser yesterday, established a plan, and now is the time.

I am going back to school to get my nursing degree. I have decided to pursue a BSN - Bachelor of Science in Nursing. There were many considerations that went in to choosing this route rather than getting an ASN, but this was ultimately the decision I made. It will take me approximately three and a half years to complete this, as I need several science courses that I did not have to have for my prior Bachelors Degree. I do have the option to double up on those science courses, but as they are all lab courses, and I have been out of school for ten years now, my adviser, Daddy Mac and I have all come to the conclusion that I am much more likely to successfully get admitted to the nursing program at the college of my choice if I spread them out. The reason behind it is this: because I have been out of school for so long, they will only look at my cumulative GPA starting with the classes I will begin this fall. I need, at a minimum, a 3.0, and at least a B in ALL of the science classes, to have a good chance of being accepted to the nursing program. Ideally, I would need to have higher grades - as the average GPA of applicants to this program is typically between 3.2 and 3.4. Admission is based on a points scale, with roughly 90% of the points tied to GPA and the scores in the three specific science courses I need - for example, a student with a 4.0 and A's in all three classes would have a total of 70 points. A student with a 3.5 and B's in all three classes would have 56 points. There are only 60 open positions each semester in this nursing program, so it is VITALLY important that I do as well as possible in these classes. To that end, my decision on how to schedule my courses is set up to give me the best opportunity to achieve the highest GPA possible. Because I have been out of school for so long, I want to ease my way back in. I know it will be culture shock and that it may take me a few weeks to get things straight - and I desperately want to succeed at this, so I am trying to give myself every opportunity there is to do it. I have the faith in myself that I can pull off all A's, now I just need to prove to myself I can do it. The first time around, my GPA was not nearly so stellar, mainly because I was a bit more concerned with my social life than my school life - I freely admit that. This time, I am hoping that the different place I am at in my life will make a noticeable difference in my performance at college.

Fingers crossed, but I'm jumping in right off the high board here!