Grace Shining Down

Oh, how I've missed blogging!  Lately, there has been so little time, but today I sacrifice cleaning my house (while all three girls nap) after rearranging to make room for the Christmas tree, so I can share a story of Grace shining down from one person to another.

Lily had to have her blood drawn today at the hospital.  I had both Aria and Lily in a double stroller, and the elevators were much slower than usual.  (I like to do things quickly at the hospital to avoid paying as much of the garage parking fees as I can.)  Only two of the four elevators at our wing were running, and every time they came to our floor, they were packed.  I'm not kidding when I say that it took the elevator five stops to my floor before we could get on.  I was quite aggravated and ready to find admin to complain.  

When we got into the blood drawing room, I was pleased to see that my favorite tech was there.  She's always so  nice and gentle with Lily, and that means so much to me.  Lily rarely makes a peep when this lady draws her blood.  This was the case today, as well.  After the tech stuck Lily, I complimented her on her work and told her how much I appreciate her.  She told me that every morning she prays and asks God to work through her hands so that she might be gentle and not hurt her patients.  I told her that He was definitely doing that and that she was such a blessing to us and told her how the last time we were there, the tech wasn't so gentle and Lily was quite upset.

When we were leaving, I asked her and the other tech if there was a different group of elevators that I could take and explained to them how I had to wait so long for the other elevators.  They told me no, but Lily's tech made a shhh sign with her finger and waved me to go with her.  She took me to the staff elevator and then told me how to get back to my car, but she misunderstood what floor I needed.  When the elevator got there, and she realized I needed a different floor, she decided to go with me so she could point the way.  

She was so friendly and such a blessing, and I could definitely feel God's presence living in her.  I walked to my car, elated that I got a chance to have such an encounter!  

I thought about the whole situation:  how I was aggravated with the elevators and then how wonderful this tech was with Lily and how helpful she was to me.  I thought about how I go through life with aggravations, but had I not been aggravated, I would not have had the chance to experience God working in someone else and His love shining through to others like me.  It was inspiring and uplifting, and my heart has been singing a song all day long.

If you are the parent or caregiver of a child with a diagnosis of Trisomy 18 or 13. . .

. . .please consider taking this survey.  This is for a graduate student at the University of South Carolina.  The survey shouldn't take more than 10 minutes to complete, but I bet it'll take you even less than that.

http://www.surveymonkey.com/s/socialmediatri13or18

 

Thanks for helping!

Sitting Up Like a Big Girl

Here's a video of Lily getting into a crawling position and going from there into a sitting position.   Today, Lily's PT said that Lily has accomplish mobility.  What a wonderful thing to hear!!!

Development

Before Lily turned three, she received services from The School for the Deaf and Blind.  Lily is neither deaf, nor blind, but she has small nerves in her eyes, and that qualified her for those services.  We received the equivalent of early intervention and orientation and mobility services.  Once Lily turned three, her services with TSFTDB ended.  Miss Alisha, her orientation and mobility therapist, told me how she saw, numerous times, how children's development basically exploded at the age of three.  With Lily, we never know what's going to happen with her development, so I just sat back and hoped that Miss Alisha's words were somehow prophetic for Lily.

Lily will be 3 1/2 next month, and I can joyously say that Miss Alisha's words ring true for Lily.  The development we've seen since Lily has turned three is truly amazing.  

• We're noticing a HUGE interest in toys.  Lily is reaching for items that we put on the floor and reaching out when she's in her gait trainer.  It's almost like she can't wait to get her hands on whatever item she's interested in.  She's also picking toys that she's dropped back up.  This is so important because we now have something to motivate Lily with.  Motivation will help her with walking or crawling.)
• Speaking of toys, I often give Lily a choice between two items.  Lily reaches for the toy she wants to play with.  You might say that she's just reaching, but the other day, I gave Lily a choice of two toys, and she didn't reach out.  She shook her head "no."  I found two other toys, and she reached out for the one she wanted.
• Lily's posture is improving, and her ability to sit for an extended period of time keeps getting longer.  She plays with toys with both hands while in a sitting position.  One of her favorite toys is a blue ball.  She likes to try to bounce it, and when we roll it to her, she tries to catch it.  Her reflexes are a little slow, but sometimes, she does stop it with both hands.  I think playing with this ball has really improved her sitting stamina and her posture.  She's definitely motivated to sit up and play with it.
• Lily is now able to put herself in a crawling position, hold it for at least five seconds (if not more), and rock in that position.  Today, her PT said she wouldn't be surprised if Lily began crawling.  This is so exciting to watch!  And the great thing about it is that she is practicing her moves--sometimes putting herself in this position ten or so times within a 15 minute time period!
• From the crawling position, Lily is able to put herself in a sitting position.  She's still at the point where she's sitting on her legs instead of moving her legs into a cross-legged position, but we're working on that one.  Last night, she kept practicing by going down on the floor and lifting up into sitting.
• Lily has what we call a Cleopatra sit.  She extends on one side and looks like Cleo sitting on a chaise lounge.  We've been working with Lily, trying to get her in a sitting position from her Cleo sit.  She's not 100% there, but her angle is a whole lot better than it's ever been.  The way this girl works, I'll say she'll probably be there in the next few weeks.
• Lily's enjoying new tastes.  We've been experimenting with different flavors of yogurt.  She's even enjoyed some chocolate pudding, and last night, she tried ice cream.  While she's nowhere near sustaining herself, just that she's allowing these new flavors is big.  So not like the Lily we've seen in the past. 

It's so amazing to watch all of this occur.  As always, it's on her own terms.  She's doing this stuff while she's sitting on the floor, when we're not sitting by her.  It's as if we've (and by that, I mainly mean her therapists, but since we reinforce what the therapists are doing, I'm including us) given her the tools, and she's creating the masterpiece.  It's spectacular because I know we (Dave and I) could do more.  We don't set aside a certain number of minutes per day to do therapy.  Her therapy comes in the form of play and transitions (like taking steps from her feeding chair to her pillow) and during diaper changes.  She gets time in the gait trainer, and we play with her while she's in a standing position.  But she's the one rolling on the floor, putting herself in that crawling position, making herself sit up, practicing.  My word, she has such an internal drive to learn these new skills!  I look forward to seeing what the next half of her three years brings. 

Welcome to This World Baby. . .

The plan was to be induced on Friday.  I was to be there at 7 in the morning.  It's not that I wanted to be induced, but it certainly did make things easier since my mom would be here to watch the kids.

Thursday night, Dave and I stayed up a little later than I wanted to, but we wanted to get everything finalized on this end.  Around 1:30, we headed to bed.  I had a little trouble sleeping due, I'm sure, to pre-delivery jitters, but I probably dozed off for maybe a good twenty minutes when, at 2:30, I heard Soleil crying.  I got her out of bed and went into the living room to rock her for a while.  When I sat down, a contraction started that gave me a slight pain in my back.  We rocked for a while, but then Lily started fussing, so I put Soleil back in bed and went and got Lily.  When I sat in the rocking chair with her, I got another contraction.  After rocking her for a little while, I put her back in bed and went back to bed.

But I had trouble sleeping.  These contractions were different from the ones I'd been having.  I pulled up the contraction tracker app on my phone and set it into motion each time I had a contraction.  They weren't regular, and they were pretty far apart, so I felt no need to worry or wake Dave.  With these contractions, though, sleeping was out of the question. 

Around 3:30, Soleil woke again.  Again, I was out of bed in the rocking chair, having a contraction.  This time, the tracker was going.  And again, Lily woke up.  When I got her out of bed, I noticed her oxygen making a wet sound, so I turned on the light and saw that snot was pooling around her cannula and out of her nose.  I cleaned her up, took her oxygen off, and cuddled her.  My mom was awake by that time, and she was helping me with Lily.  And by that time, the contractions were roughly 3 to 5 minutes apart.  I suctioned out Lily's nose and decided to wake up Dave.  (Let me add here that I was doing a lot of walking through the house, and it seemed like every time I got up to walk around, I would have a contraction.)

By 4:30, we were headed to the hospital.  (I found out yesterday that Dave was saying a prayer, hoping that we would make it because the car we took was acting funny.  So funny, that it broke down the next day.)  Nevermind the induction.

When we got to the hospital, I was 8 cm dilated and begging for an epidural.  (I am the biggest baby when it comes to pain.)  Luckily, I was able to get one, and once things settled down, I was able to relax and rest a bit, which I needed since I hadn't had much sleep since 8:30 Thursday morning.

At 8:19, we welcomed Aria Hope into this world, quite the surprise because we were thinking she was going to be a boy (not due to an ultrasound but more because of what others were saying and our own "gut" feeling).  Weighing at 8 pounds, 1 ounce, she is my biggest baby yet, but she is such a tiny little thing.  She carries on the nature name I have chosen for all of my girls for "Aria" is Italian for "air."  But there is a musical component in her name, too, for nature is a symphony, and I love that.

We are home, and she is well, and she is loved.

 

When Words Try to Hurt

WARNING!  Please do not go back and respond to the comments I'm going to post about.  Please respect my wishes for Lily's blog to not be a warzone of hateful words between one another.  I am merely making this post to share the process I went through and how healing occurred from it, to share that because it is a beautiful feeling.

For the past two days, I have been bombarded by some pretty seething comments regarding my "Hateful Words" post.  While I don't like these comments, I have to say that I respect each and every person's right to have such comments.  This is a blog.  It is a public forum, I must accept that everyone does not hold the same opinion that I have, and that is why I have chosen not to delete what Anonymous (all but one of them) has said.

What these Anonymous commenters don't understand is that their words didn't hurt me that much.  I'm sure they wanted them to, but they didn't.  It was more the situation.  Sure, I wanted to reply back with some biting, sarcastic remark, but I just finished reading a book about Desmond Tutu, and I highly value the way that he handled conflict and epitomizes the ubuntu philosophy where "A person is a person through other persons" and that person knows that "he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are" (No Future Without Forgiveness, by Desmond Tutu).  I have admired this philosophy for years and have struggled to cultivate it within myself since learning about it.  Perhaps it is through encounters such as this where my greatest cultivation occurs.

Here was my biggest problem.  I felt misunderstood.  I know.  I know.  I shouldn't worry about that, but as a writer, I strive for clarity.  These people posting these comments just didn't get it.  And that bothered me.  I wanted to respond to tell them that they got it all wrong.  But you see, their words seemed hateful to me, and I knew my responses would sound the same.  I thought about Martin Luther King Jr.'s quote "Hate cannot drive out hate; only love can do that," and so I tried to think of nice things I could say.  Kill them with kindness, my mom would say.  Still, I struggled.  Dave suggested that I just keep quiet, but the problem is that I cannot keep words inside of me.  Honestly, I don't like to write, but I need to write!  Keeping it inside of me is a dagger that won't stop twisting.

So a struggle ensued.  This was not so much about them and me as it was about me against myself.  If I didn't really want to respond hatefully, and I couldn't respond silently, and the kind words weren't there, what was I to do?  Could I really not get in touch with that peaceful place and respond appropriately?  What was my inability to respond with kind words saying about my beliefs as a Christian?  Why could I not respond in a way I know Tutu would respond?  (Silly thought, I know.)

I'm sure the negative posters delighted in my struggle.  They are probably sitting back right now, in self-congratulatory mode, thinking that they have won.  What they don't know is that they won't win because I embrace struggles and recognize them as a chance to grow.  Currently, I am reading Aleph by Paulo Coelho (perhaps by the grace of God I am reading this book), and just last night I read this:  "What hurts us is what heals us."  Exactly!  Those seven simple words gave me renewed strength, and my fight began.

The problem then became "how do I allow this healing?" because I still had the problem of keeping silent.  Part of my plan became that instead of giving them my negative energy, I would give someone well-deserving my positive energy.  A few Sundays ago, in church, a little eight-year-old girl was sitting in the pews a few rows ahead of us.  Towards the end of the service, she looked back at Lily, and she had the most endearing, the purest, look.  It was full of compassion and there was not one single sense of disability in her eyes.  It was all I could do not to cry.  I complimented her to her mother, which was very meaningful to her mother.  I had been meaning to email her mom and praise the little girl again, but never did.  This little girl's look held my hope these past few days, so I resolved to email her mom and explain the situation and praise the little girl even more.  That resolve was step one, and I emailed the mom this morning.

Step two involved trying a few things.  I tried crying my frustration out.  There are times when crying is very cathartic for me, but this was not one of those times.  I tried washing those words away with a nice, hot shower.  This pregnancy leaves my skin itchy, and showers help.  That's about all that shower helped, though it did give me the idea for step three.  And, of course, I did try praying.  Let's just say that I know my prayer life desperately needs to improve.  Unfortunately, none of those worked single-handedly, but I do give credit and say that they all helped get me there.

I still needed step three.  Music.  Somewhere around midnight, I went to my keyboard. . .and stayed there until about 1:20.  Oh how many problems have been forgotten and solved by sitting alone at the piano or guitar!  And I have now added to that list.

I went to bed, able to sleep, and woke up this morning feeling quite refreshed.  I tried thinking about those posts, but my mind just wouldn't let me do it.  Another post came in, and I just laughed when I read it.  None of those words went to my heart, and I didn't feel the need to respond (except I did want to make one correction, but I didn't, and I was amazed at the 54-year-old who made the comment because I think of the maturity the 54-year-olds I know have that this person could use).

And here's the last thing:  the other day, I was listing to Beth Moore on the radio, one of her Quick Word broadcasts.  I believe she was talking about her daughter, but she may have been talking about one of her listeners.  She was talking about criticism, and she basically said that you have to know yourself to handle criticism.  You have to know when to accept it and you have to know when it's not right.  What these commenters don't understand is that there may be areas where I feel insignificant and insecure, but where they hit me, well, those are my most secure areas!  In trying to be hurtful, they were only helpful because they allowed me to do a little self-searching and realize that therein is where my strengths lie.  I AM a good mother, I AM a good person, I stand firmly behind my decision to allow Lily to experience life and will defend that decision to the end, and I am NOT perfect.  (Never claimed to be.)  All of us are children of God, and that includes Lily, and not all people believe this.  They don't have to.  But Lily doesn't know that.  What she knows is that there are plenty of people out there who love her, and that's all she needs to know.    So in a way, I thank these readers for their comments.  In my opinion, they weren't nice, but their words made me stronger and only confirmed that "what hurts us is what heals us."

Aaaaahhhhh. 

AGAIN, I cannot express how much it means to me that you not go back and make comments regarding those comments.  I am healed and today is a beautiful day, and I hope that you can find it in your heart to not give these people any of your energy, but to find a way to heal and grow from their words instead.  Besides, I do not need any affirmations, and That.  Feels.  Good!

Post Surgery

Lily had her surgery for her diaphragmatic hernia yesterday.  All is pretty well.  She's had a few episodes of pain, but medication has helped with that.  She's also vomited a few times, but I'm hoping it's just a post-op thing.  She slept well last night, but her pulse ox kept going off.  That was a little frustrating for a few reasons.  (1) It might mean that Lily needs to go back on oxygen--although that could be the medicines causing that, and (2) it meant that I got very little sleep.  I've already taken a nap this morning!

There are four little bandaids dotting Lily's abdominal area, small incisions where they went in to fix the hernia.  No big, long scar like the bowel obstruction left!  The doctors heard a little upper respiratory congestion, so I believe they're going to have a respiratory therapist come in and do a little therapy with Lily.  I don't know if that means they'll keep her another night or not.  They anticipated that she would be in for one night, but now I'm wondering if they'll make it another. 

I've got a few more pictures to share of Lily in her final two weeks at Pattison's.  She really had a good time, as I think you'll see from the pictures.  And I don't think I ever posted about this, but Lily was chosen Prom Princess (along with one other camper)!!!!

Speaking of Pattison's, one of our local magazines is having a contest to choose a nonprofit to receive their Giving Back Award.  They are currently in the semifinal round, and Pattison's has made it to that round!  If you have a moment to spare, please vote for Pattison's by going to

http://www.charlestonmag.com/givingback/votenow

It's an easy way to vote.  Just choose Pattison's from the drop-down list of nonprofits, give your email address, and then choose whether or not you want Charleston Magazine to send you more information.  Simple.  I'm not sure if the winner receives anything other than community awareness, but community awareness can lead to more support, so I'm all for that!

And Lily Loves Pattison's!!!

At Pattison's, Lily got to try out their gait trainer, and I'm happy to say that she now has one of her own at home!  We're trying to get used to it, and unfortunately, she'll have to take a few weeks worth of a break from it due to the surgery, but she's taking assisted steps in it already!  We're taking it easy by using it predominantly as a stander for now, but we'll work her up to using it more as a walking device.  I just know that that won't take long!

So here are some very overdue pictures!!

Lots of balls!

I'm telling you, one day she's going to be a yoga teacher!

Preparing for the real fishing trip!

Lots of colors!

Fishing Day!

Bandaid Art

I think Lily would rather eat the markers than draw.

Ice Skating!!

You really should stop and smell the flowers

Her first manicure!

Time to go swimming

Lily's first facial!!

Checking out the tent

Getting ready for prom!

Dancing with Daddy!

My little ones

Prom Princess!