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Thursday, November 29, 2012

Little Man's Progress

Now that my son's two major surgeries are complete, we embark upon the longer journey full of specialists and therapies.  I took him to a Speech and Language Pathologist on Tuesday.  SLPs handle feeding issues in children also.  She observed him eating - from a spoon, his fingers and a bottle.

Her analysis was over-all a good one.  We have things to work on, but given the fact that he had his palate repaired a month ago, and his steady progress, she thinks he'll catch up in no time.

We talked a little bit about speech and the things we need to watch for and encourage in him.  Though he babbles a lot, he's not making some of the sounds they'd like to hear from him.  So we'll keep working on it and re-visit in the coming months.

Everything with my daughter came so easily, and right on schedule, if not ahead of it.  I worry that some day he'll be hurt and discouraged by the fact that she hasn't had these struggles, and he has, and does.

There is so much more that goes in to something like a cleft lip and palate than just the visual repairs.  We are beginning to learn what all of those things are.  I continue to pray that we can support him through all of it, so he has the best life possible.  Through it all, he continues to be a smiling little charmer, and quite the trooper!

Tuesday, November 27, 2012

I'm in charge

My husband and I were talking the other night, and I mentioned to him that I am sometimes amazed that someone put me in charge of two human lives.  Not in the sense that I think I am a poor mother, or that they are in any danger being with me, but I just wonder what vetting process was used to determine I get to be their mom.

My husband works on Sundays, so for much of the day it's Mommy and the kids.  I often try to get them out of the house, for sanity's sake for all of us.  Regardless of what we do, I am in charge of these two little human beings, their welfare and development.  That's a big deal.

Some days I'm unsure about what I'm doing as a mom.  I worry that I don't do enough, or well enough, or...  but at the end of the day, I do know that I am trying my hardest to be the best I can for them.

Because they deserve it.

Tuesday, November 20, 2012

Just Right Kisses

I got to attend my daughter's Thanksgiving Feast (though she calls it a "beast") at her school last week.  We sat in a room full of 3 and 4 year olds, enjoying their meal and the controlled chaos around them.  It was nice to get a glimpse of her in her daily element.

Driving back to work after I left her, I started thinking about all I love about that little girl.

She is so quick with her incredibly infectious smile.  I hope as she gets older and experiences more of the world, she is able to continue to lead with her smile.

She has a belly laugh like no other.  Obviously she will have sad times in her life, but I hope she never loses it.  Laughter really does make a day brighter, and a life better.

She is hysterical.  For a three year-old, she has a wonderful sense of timing and humor (though sometimes I don't think she quite "gets" why it's funny).  If you've ever met her father, you know she's got a good shot at maintaining this sense of humor.

At any random moment, she might approach me and say, "Mommy, I want to give you a big hug and a kiss".  I was a teenager once.  I'm sincerely shocked my mother let me live to adulthood.  I know that this warmth toward me won't always be there.

Her inquisitive little mind is a sponge.  She asks questions I'd expect from a much older child, and she's able to put entire concepts together.  It is up to us to make sure she remains stimulated and continually learning.  An intelligent but idle mind (especially during teenage years) is dangerous.

She has a huge, loving heart.  She is very in tune with people's emotions.  She seems to instinctively get when a mood is serious, or someone is sad.  When her brother was in the hospital she worried for him and couldn't wait until he was better.  I wasn't feeling well over the weekend and she offered to come snuggle with me to "make you feel better Mommy".

Over the weekend she and my husband were in her room, and I could hear their conversation over the monitor.  They were giving each other eskimo kisses and butterfly kisses, until she stopped and said, "No Daddy, I want just right kisses."

That little girl is just right for my heart, and no matter where she goes or what she does, she always will be.

Time spent

Last night my incredibly helpful husband was cleaning the kitchen and washing baby dishes when I got home with our kids.  He continued doing that while I held the baby and we talked about a few household items.  When he finished he asked me what I wanted him to do next.  I told him I'd love it if he'd come in the living room and we could all just hang out together.  We really don't get a lot of time to do that, and we had a great evening.  We talked and played and giggled on the floor together as a family, then headed upstairs for baths and more play time.

We both work full-time, and my husband travels quite frequently.  Especially when I'm home alone with the kids, it's far too often easier to turn the TV on for them while I cook, or clean, or get things ready for the next day, or.....(you get the picture).  However, it's the evenings we leave the TV off and just spend time together that go so much more smoothly.  Our daughter listens better, there's a lot of laughter, and I feel like I actually had a chance to see my children that day.

I certainly don't think that we are bad parents for over-utilizing the television.  Nor do I think that we love our children any less than parents who allow less TV time.  I think we are just human parents, who have recognized an area in which we could do better - so we will.

There is no manual for parenting.  There are a lot of books, articles, experts and people who claim to be experts, where you can find information and opinions.  Those things certainly have their place.  However, there is no replacement for common sense, parental instinct, love and trial and error.

Tuesday, November 13, 2012

Savoring it

It's been a rough few weeks for us.  We've had our share of "stuff" to deal with: sleepless nights, pain, tears, worry and stress.  When we were at the hospital with my son, a nurse walked in to his room at a particularly vulnerable moment on my part.  I was upset and crying, and my husband was holding me, doing his best to make me feel better about my poor baby in pain.

Little sickie on our way to the Pediatrician
I thought about that moment the other day, and wondered what that nurse must have thought.  I wonder if she kind of side-eyed us.  His condition is not life-threatening, his surgeries are not hours upon hours, and his hospital stays are limited to days, not weeks or months.  I know the nurses at All Children's see MUCH worse than what we have endured, but to us it's not nothing.

I have always loved children.  If you ask my mother she'll tell you I was born to be a mommy.  I wasn't always sure I wanted some of my own, but I thought if I did, I knew how much I would love them.  Truth?  I had NO idea.  Until I had my daughter, I really had no idea how much it is possible to love another human being.  The best way to describe it is to imagine your heart running around outside your body.  You want to protect it from everything, and you feel as though you would die if something happened to it.

When my kids hurt, I hurt.

So it was a relief to have them both seem like they were feeling better this weekend.  I had the opportunity to take them to the park and "ice cream store" on Sunday afternoon, and it was just plain fun.

Really, it is because of the rough patches that I am able to wholeheartedly appreciate the relaxed, good times.  It is because of those rough patches that I get off my lazy behind, get everything packed up, and take them to the park and out for ice cream.  It is because of those rough patches that I savor the snuggles, giggles and games when they are happening.  And that reminder can apply to every aspect of life.  When you struggle, you appreciate success.  When you are lonely, you appreciate friendship.  When you miss someone, you hold on to every detail of your time together.

This too shall pass....the good and the bad.  So this mama is going to hold on to the good for as long as possible, and learn from but let go of the bad.

Thursday, November 8, 2012

That Holiday Time of Year

It's finally starting to get chilly here (well, chilly for Floridians!).  The past couple of days there has been a little nip in the air, though the sky has been clear and sunny.  I love it!

The little marketplace area near where we live always puts its Holiday decorations up the weekend after Halloween, which coincided with the time change this year (no idea if it has every year though).  So, when we drive home from "school" every day, it's starting to get dark and we are able to see the decorations festively lit.  This combined with the chillier weather is starting to get me in a little bit of a Holiday spirit!

I get a feeling of peace, and an anticipation of time spent with family and friends, fun gatherings, good food, mouthwatering scents, hot cocoa and Baileys, and warm, rich red wines.  My daughter is getting old enough to start really "getting it" this year.  My son was born on Christmas Eve last year, so this is his first real go at it.  I am excited about their reactions and experiences, and building new memories and traditions as a family.

I have warm, wonderful memories of the Holiday Season from my childhood, and it all revolves around family.  I want to create that feeling and warmth for my children.  I want to give them a foundation from which to grow when they are older and have families of their own.  I want them to be able to close their eyes and be able to remember - to feel, smell and taste the Holidays any time of year.

These last two months of the year are such a treat.  Everyone seems just a little nicer, more generous, and slightly more relaxed.  So in their honor, I think I'll go home tonight, throw on some warm clothes, light my pumpkin candles, have a glass of red wine, and sit on the floor playing with my kids.  Sounds like a nice way to kindle my budding Holiday Spirit.


Tuesday, November 6, 2012

Follow up appointment

We saw our Dr. Gallant and Cricket today, for a check-up from little man's surgery.  It was all good news.  Doc is really happy with the way the repair looks.  We can leave the arm restraints off all the time now, which makes everyone's life easier, and his a lot happier.  

Playing "peek" with me in the car after our appointment
Our next procedure will be outpatient, and will work to reshape his nose.  When he was born, one nostril was pulled completely flat.  During the first surgery, our doctor worked on it quite a bit.  It already looks much better than it did, but he's a perfectionist (thank God!), and wants to work on it again.  Since it's outpatient, the recovery won't be as long or as difficult.  After that procedure, we'll be able to take a break until he's 6 or 7 years old.  Phew!!!

My husband and I both went to the appointment, and ended up taking our daughter too, more due to lack of time to drop her off elsewhere than anything.  She loves the All Children's facilities - plenty of games, toys and activities to keep her entertained.  She finally got to meet the doctor and nurse who fixed her brother's "boo-boos".  An interesting way to spend a morning together as a family, but it was together nonetheless.

My husband and I sincerely thank every one of our friends, family, acquaintances and strangers who prayed, thought about, sent gifts, visited, called, texted, etc.  We have really felt as though there are an amazing number of people pulling for our little man (and us), and that is overwhelming.

We are looking forward to regaining some normalcy in our lives (and maybe getting a little sleep!).  

So much love to so many!!!

Monday, November 5, 2012

Going Through Something

I'm always kind of shocked when someone tells me they've read my blog.  To me, this is a diary of sorts - one I don't mind sharing (obviously) - but a diary nonetheless.  It's just a place for my random thoughts, and if someone finds it interesting, great.

I've seen some wonderful things since I started this a few weeks ago.  People have reached out with encouragement, kindness and stories of their own.  Good friends have offered help, spent time with us, even brought us food!  It's been a great experience for me.

I've been pretty open and honest about my feelings: things I probably wouldn't just tell someone in conversation.  However, because I have this outlet, people know more about me, and have shown me more compassion and empathy.

Everyone is going through something.  It's easy to become adversarial these days, especially with a heated election looming.  It's easy to focus on the things we disagree with or dislike about someone.  It's easy to forget that there is a person behind it all, with feelings, problems, and issues of their own.

The day I found out about my son's cleft via ultrasound, a co-worker was particularly nasty to me.  She actually brought me to tears in the middle of our office.  I wasn't yet ready to discuss what I had learned, and under normal circumstances I would easily have brushed or laughed the encounter off.

So I've been trying to remember that everyone is dealing with something, and trying to be a bit kinder and more patient with people I encounter.  Hopefully by sharing my experiences, I'll help other people realize that the person on the other end of the phone, in the car next to you, or taking too long in line might just be going through something of their own.

Sunday, November 4, 2012


I was rocking and feeding my son today, and in a soft afternoon light I noticed he is healing.  The bruises from failed IV attempts are yellowing at the edges and fading.  Enough baths at home have nearly erased the tape marks from his arms and feet.  The abrasions and bruising around his mouth from instruments to hold it open during an over two-hour surgery have disappeared, and the swelling in his face has gone down.  His smiles and giggles have returned, and are almost more present than tears.  He is quite literally more whole than he was before his surgery.

I had hoped that with his healing would come some of my own; but my sadness, fears, tears and guilt linger.  See, it was my body that made this happen.  My body failed him.  My body created the "imperfection" that has caused him pain, and the potential for heartache.  The intellectual side of me understands that I shouldn't feel this way.  I have heard more times than I can count that this guilt does no one any good, and that I did everything I was supposed to do while pregnant with him.  Yet I can't help but wonder if something I did or didn't do could have prevented him having to go through all of this.

This has all caused quite a bit of guilt over my daughter too.  My son has needed more of my time and energy lately, which has left less for her.  I've not been as available for nighttime snuggles, stories and puzzles.  Though she's never out of my mind, I've had to be physically absent more than I'd like.  I know she is young, and will likely not remember this time either, but I will.

So I just have to hope that as he heals, I will begin to do so also.  I have to hope that the strength I see in him will give me the push I need to heal myself.  I have to pray that he doesn't blame me one day, as I blame myself, and that he will understand I would have done anything to change this for him.

Friday, November 2, 2012

Two Steps Forward...

This post was originally written on Tuesday in the wee hours of the morning.  I wrote it, but had to quickly set my computer down when little man started crying.  I put my phone down on top of it - directly on the backspace key.  I deleted the entire post without even knowing it.  When I sat back down on the couch and saw it gone, I just threw in the towel and closed the computer.  Being totally new to this blog thing, I didn't realize until today that it had been saved!  So here it is....several days later.

Shortly after waking yesterday, my hopes were high.  Little man seemed to have turned a corner.  He was in a wonderful mood.  The day before we had lost the IV (little Houdini actually worked it out of his arm) and the pulseox monitor from his toe.  He was FREE!  So yesterday morning we were able to roam the halls of the hospital together, play on the couch, and I even heard giggles out of him!  Mid-morning he willingly drank 2 oz of formula from a bottle, it really seemed we would be on our way home if he continued progressing at that rate.  We even got a visit from Ronald McDonald!

I got him down for a nap, knowing he'd get some pain meds at 1:00, and we'd work on drinking 3 oz 30 minutes after that.  3 oz is our magic number.  He's got to drink that amount in one sitting for a few feeds before it's safe for us to go home.  Unfortunately, a 10 month-old does not have the language comprehension to understand that benchmark (believe me, I tried many times yesterday to explain it to him!). 

He was awoken around 12:45 to have vital signs taken (they never let a person just rest in the hospital!), and he was PISSED OFF about it.  I may be responsible for that trait, just ask my husband how pleasant I am if he wakes me before my alarm goes off.  So, despite my best efforts to calm him enough to feed him, he clearly just wanted to go back to bed.  We gave him the meds and waited the half hour, while I held, bounced and rocked him.  Then I tried to get him to eat.  No such luck...gagging, choking, pushing at his bottle - as though I were trying to feed him poison.  So I bargained with him.  I told him he could go back to sleep for a bit, if only he'd agree to eat a lot when he woke up. 

He took a brief nap, but woke up still crabby, and still unwilling to eat.  Bad sign.  We were told we wouldn't be going home, and worse yet, they needed to put an IV back in to prevent dehydration and give him a little more time to heal.

Now, I consider myself a fairly strong person.  I've been through quite a bit in my life, and I've come out the other side.  However, yesterday I lost it.  I cried.  A lot.  I am positive exhaustion and stress played a major role, but I just couldn't take it anymore.  I couldn't watch him continue to suffer in pain, frustration and exhaustion.  Thankfully my mom donated her afternoon to relieve me for a bit so I could get out of the hospital.

I returned still tired but slightly refreshed, my dad brought my daughter, and my husband drove back up after a full day at work.  My family was together, albeit briefly, and that's what matters.

Here's to a better day.