Hello, Kitty!

We had Evangeline's first birthday party over labor day weekend.  Her paternal grandparents traveled up from central Florida and my parents were there as well.  Her two godmothers also attended and she had a FABULOUS time! 

I had a darn good day myself! 

Spending Time

Time is a resource. Because it surrounds us, we often don’t see it as a scarce resource…but it is.  Most of us don’t think about the fact that our days are literally numbered or that life, by definition, is a terminal condition.  And that unawareness is healthy. If we walked around thinking of “the end” all the time we would be a woebegone species, incapable of enjoying all the little beginnings around us every day.

 

Still, the idea that time is valuable is a good awareness to have every once in a while. I was sitting in my cube daydreaming about Evangeline the other day, wondering where this first crazy year went.  It hit me like a gut punch when I realized in that moment that there were a thousand moments with her that weren’t coming back to me. No matter how I tried to cram in memories on the weekends, spending 8-12 hours in my cube and 2 hours on the road 5 days a week was a lot of time I was missing. It made me sad but what could I do? Like the song says “I got bills to pay, I got mouths to feed. Aint’ nothin’ in this world for free.”

 

As most of you know, my wonderful husband is now teaching Geometry and Algebra II at a Northside Highschool in Jacksonville.  We were enjoying the idea of becoming *gulp* middle class again.  Two nice incomes means no more standing in line at the grocery store hoping the card goes through. (although….I will kinda miss that gameshow feeling as you smile and cross your fingers while mentally chanting “Big Money!  Come on! Big Money!”  Some of you know what I’m talking about) lol

 

Anyway, as we were getting Evangeline set up at her new PT we became aware that she can still receive her CMS healthcare on his salary. We thought his higher salary would disqualify her but it turns out he’s right under the cap- but add my salary in and it’s too much.  Which got me thinking.  Could we put up with another year of living poor so I can have a year of time with my daughter?  It wasn’t an easy choice, but after talking, prayer and waiting for a peace…. we decided to do it.  This next year, I get to relearn her schedule, watch her grow, work on my book project and just be a mom.  After that its “back to reality” but this year, this precious year, is a gift beyond value to me- worth more than a million bucks.  My husband and my family are giving me the best thing ever.  They are giving me TIME.  Thank you all.  I put my notice in last week. My last day is the 31^st.  Pray for me.  I’m very nervous about mom-ing full time.  Especially because amid the baby activities, I want to make sure I set aside time each week to really throw myself into the “expecting spina bifida” project that has become so close to my heart.    I am excited and determined not to waste a drop of a second of this magical time in my life.

Revisions....

Revision:  the act or process of altering something with the intent of improving it.

As a former English teacher, I know a thing or two about revisions. I used to make my students do them.  I personally revised my master's thesis no less than 10 times.  Revisions aren't done for fun and they aren't done because the first draft was a piece of crap. They are done because all things can be improved with a little thought, time, and effort.  And that's the real issue for most of us, isn't it?  What in our lives is worth the effort of revising? Sure, something may be bothering us, but is it bothering us enough to go through all that effort to totally rehash every detail, find the errors, and make the tweaks? But more on that subject in a moment....

 All this vague talk of revisions is of course inspired by Evangeline's recent shunt revision.  Revising the shunt was a proposition that shook me to the core before her shunt was installed.  How many would she need?  Would they be terrible?  How would I know to take her to see the doctor?  For all the other paranoid....erm...I mean diligent new moms of babies with shunts, I will attempt to answer those questions below- at least in regards to how it played out in my situation.

Evangeline's shunt was installed at four months old. For five blissful months it operated with narry a peep of complaint.  Then, on Friday night we put her to bed- just like always; at 3 am she woke us up crying.  Thinking it was a sour tummy (something she occasionally gets) I went to get her and offer her a back pat and jiggle in case she had a burp stuck somewhere.  No burp came out...just some foam and rancid smelling vomit.  It was not projectile like they say to be concerned about. (Though she has projectile vomited when the shunt was not involved. In those incidences she got some pretty incredible distance..like totally across the room.  It was impressive but just a tummy bug- not a brain issue).  So anyway, after she threw up her sour milk, I offered her a drink of fresh formula, which she seemed happy about. She drank a bit and fell asleep. That morning, she just couldn't get awake.  This was also not uber scary as sometimes when she's going through a growth spurt, she wakes up in the morning, eats and then wants to go back to bed.  But when it was after 10am and she was still wanting to nap, I decided further investigation was in order.  I took her and placed her on her play mat.  She had no interest in toys.  Neither would she lift her eyes upwards to track them. She didn't want to eat- but more telling than anything, she didn't smile or laugh.  We knew there was an issue.  There was no guessing involved.  No need to worry that "maybe it was nothing".  Shunt = obvious.  We took her to the ER and in a few hours time, after doing an MRI, they informed us that emergency surgery would be needed.  It broke my heart to see her uncomfortable. I was nervous about the surgery but oh so very glad that it would bring her back to me...smiles and all.

Less than 24 hours after, she was coming off the morphine and ready to play.  As you can see in this video, she was a little baffled with life.  The entire scenario to her was probably like an infant version of "the hangover".  She woke up still a little buzzed, in a strange place with a sore throat (from the intubation during anastethia), a slight headache, and some random banage on the side of her noggin.  Clearly she was like "What the Heck, Ya'll?" But all her people were there, so she figured it wasn't all bad.  (BTW, I had no idea I'd be on film... I thought I was going to be an off camera voice but oh, well lol)

Our hospital stay wasn't a fun time, but it wasn't terrible. We had our great nursing staff, our wonderful neuro team, and family and friends by our side.  Baby girl wasn't in over-much discomfort and I cannot explain how wonderful it was to see the "Evangeline" spark back in her eyes and the majority of her discomfort gone.  Hopefuly we won't need any more revisions for a long while - or ever.  I'm good with one and done!!

Now, back to what I was saying about revisions in our lives that have nothing at all to do with brain implants.....  I have to admit to a little unforgiveness in my life lately.  There is a situation that went down in a way I don't care for...and a couple of individuals who lied to me. And they and their lie cost me and my family a lot.  It hurts and I'm mad.  It was maybe a week ago... that even though its been about a year...I realized that I haven't yet forgiven these people.  At first I was all "well that's OK, cause these are the sort of people who don't really deserve forgiveness anyway".  After thinking about that statement, I realized that is sort of the point.  People that deserve forgivenss don't generally need it.  And the unforgiveness in my heart has been gnawing at my belly, making me feel angry all the time. And that anger pops out of me like a rabbid rabit out of a burrow- when I least expect it.  I recognze this situation as one that needs revision.  Alas, I cannot quite forgive these individuals YET.... but I am praying, asking God to help me, and letting go of the little pieces of anger that I can. I am on my way to revising this area of my life- one little error at a time.  Find it, fix it, make it better.  In that sense, life is one big revision.  A constant re-write of our heart, soul, thoughts and emotions to improve the overall substance of our existance. So whether its brainsurgery or a change of heart, revisions are never fun.  But they are necessary.

Summer Kick-off

What a busy day we had today.  Baby girl had her first taste of grits for breakfast. Then we went grocery shopping for our big cookout on Monday.  Then we came home and played in our new kiddie pool. Well, Evangeline played. The rest of us just enjoyed her fun. At first she was too engrossed in splashing to talk to me.

Then she decided she wanted to tell me all about it!


It was a good day.  Of course no summer day would be complete without a little watermelon!

Tonight, mommy and daddy will go on a much anticipated date and baby girl will get to hang out with grammy and grampa! (And be spoiled) There are many more fun activities in store for us this weekend, but we are all REALLY looking forward to this Friday....Dreamnight at the Jacksonville Zoo. Lots of families from the local SBA will be there and Evangeline will get her first look at a lion and a giraffe and who knows what else!  More pics to come from that special evening.  :)

Evangeline 8 month Update

I have been remiss in posting how baby girl is doing.  So, I will attempt to do a brief update of her skills as an 8month old as well as a doctor-visit update.  To begin with, she doesn't need any speech therapy. She is babbling away with all sorts of sounds. Her communication skills are excellent and she loves playing "peek-a-boo" and other silly games we make up.  She finds it hysterical when you mimic the strange sounds she makes.

She is learning to feed herself. She can hold her own bottle while laying down/reclining. She hasn't quiet gotten the hang of this trick while sitting up, though she is working on it.  She still has some tone/strength issues and holding her bottle up high is a bit difficult and she drops it.  This will come to her as her arm strength continues to increase during her tummy time. She is also learning to pick up small soft foods from her tray and bring them to her mouth. Watermelon is her favorite! A lot of the fruits and veggies we give her end up on the ground or her lap, but she is learning how to put them in her mouth and chomp them with her little gums.  She still hasn't gotten her first tooth yet, but she is certainly teething! 

Her arm strength is improving, and she can now roll over when she has motivation to do so, though it is a challenge for her. Her physical therapist has a goal to get her crawling by 10 months so that is exciting.  I love to see her develop as new ideas occur to her. It will be magical to watch the whole idea of "forward motion" spark behind her eyes as she lurches forward for the first time!

Her most recent urology apt was great. Her kidneys still look perfect and she won't have to go back till she's a year and then they will do some tests on her bladder to see if she is still filling at a normal pressure and also to see if she is still retaining extra urine. This test should tell us a bit  more than the one when she was only three months old did, and I am excited and hopeful about the results.

Her Physical Therapist is talking about getting her a stander to help her learn to bear weight in her legs.  She lacks confidence in that area and a stander will help her get stronger.  It is still a few months before he wants to get it for her to use, but we have to plan early as it can take a while to order with insurance holding the process up a bit.

She is still the happiest baby on the planet and I am still lucky and blessed and fortunate to be her mom. When she smiles at me in the morning, my heart melts and I can't wait to get back home to my family at the end of the day just so I can see that welcoming grin she flashes at me when I walk in the door.

Big Project

Well, my new project is in full swing!  Feel free to read all about the details here.  This is where you can find out why I'm so passionate about this new book for preganat women, where we are so far and how you can participate! 

I promise to get on here and do an Evangeline update soon. Its way past due.  Just wait till you hear all she's doing now! It will nock yer socks off!

Tiny Feet of Power

My daughter has tiny feet.  She probably always will.  After having spoken with many mommys and daddys whose little ones have SB, I have come to realize that little feet are common. Perhaps it is because weight bearing doesn't start till later. Maybe its because some signal traveling along her spine that should tell her feet to "grow" got misdirected or run off the road. Whatever the reason, her feet are small, pudgy and I adore them.  I would kiss her piggies regardless of how they looked. They belong to a princess!

Of course, I love her and I want the best for her and as long as it is up to me, I will make her world befitting such a lovely, graceful, delicate creature.  But the time will come when it will not be up to me.  I want to prepare her for that day.  To that end, I have been speaking a new verse over her.  Its found in Ephesians 6:13-14.  It says, "..Having done all to stand, stand therefore!"

Its a verse in a chapter about "the armor of God" where Paul, the author, compares faith to armor.  I will readily admit to being a history nut.  I enjoy learning about how different cultures at different times solved similar social problems- including issues of warfare.

Shoes, in Roman times, were especially important. The sandals of soldiers were studded with little metal bits (kind of like early cleats) which allowed them to literally "dig their heels in" and not be knocked off balance. Those same shoes could also be used offensively as weapons when no other weapons were available.  The feet of a soldier are his most important commodity. 

I look at Evangeline's little feet and when I tell her, "Having done all to stand, stand therefore!" I don't mean "stand up, baby girl and bear weight!"  I mean, "Dig in your proverbial heals!  Don't let this world knock you off balance.  Fear Not!  Hold the line! Don't retreat!" 

She is a person of great value, talents, worth.  At some point though, some unworthy person will try and convince her otherwise.  This person or people will make her feel sad, and will make her, for however brief a moment, wonder what she is worth. This will not happen because she has spina bifida.  Oh, goodness, that has nothing to do with it.  This sort of thing happens to everybody at some point. And when that day comes for her, I want her to be equipped with truth.  I want her to dig her heels in and call that person "LIAR!"

I want to raise a daughter who, though her feet be tiny, her spirit stands mighty.   I want her ready to take on all comers. And so I speak these words over her. Each. and Every. Day.  I tell her that God made her feet mighty, her mind beautiful, her soul triumphant. I tell her that she is equipped to fight any battle she encounters. And someday I will rejoice with her when she tells me that she encountered cruelty but she stood fast, and saw her enemy retreat.

^"13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God.
¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people."