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."

At little fun...

....can go a long way! It was wonderful to share the delight of her first trip to the beach.  Never have I heard her "say" so much in response to her surroundings.  She would just periodically stop, look at us, and babble away or giggle randomly.  We will be going back next weekend if the weather is nice.  And I can't wait for the warm tidepools we'll play in later this summer. 

Ordinary

I am pleased to report I have found a job. Its my first one ever in the corporate sector and also the first one I've had in my adult life where I actually work with adults vs. children/teens.  Its an adjustment but I am excited to be able to provide an income.  Likewise, my husband is proud to be daddy-in-charge, taking care of all Evangeline's appointments, therapies and otherwise managing the household.

As my spouse and I switch into our new routines and new roles, there is an adjustment process.  For so long we've been "surviving" and the skills we used to keep putting one foot in front of the other during the very difficult times of diagnosis, NICU, job loss, housing loss, financial stress, shunt surgery and more were great to have....but those skills are not so applicable now that we are trying to really live instead of just survive.

In a rather profound conversation last week, Bj and I discussed how so often in US history, a soldier in some awful far-flung  place of combat, living in the mud and the cold...fearing for his life as well as the survival of the man fighting beside him, wishes for nothing more than to return to his home, his life, his "normal"...and when he finally makes it back limping, tired and relieved, he finds much to his dismay that he no longer knows how to live the way he lived before. He was changed by the trenches. The heightened awareness that allowed him to survive the enemy, the mire and the muck didn't help him at home... yet  he finds himself unable to shut that sense of impending danger off. He feels alone in a crowd.  He has forgotten how to live in peace.  It is a great American tragedy that this still happens to our soldiers today.

Likewise, even though Bj and I weren't literally in war, in the beginning we did fear desperately for our child's survival. We "knew" that she would be OK, but that didn't stop me from feeling compelled to get up in the dead of night just so that I could place my hand on her sleeping form and feel her belly rise and fall with breath. I didn't want to loose her or my relationship with my spouse in a melee of hospital visits, depression and fear.  Bj and I will forever be marked by the life we lived this past year but we made it through. Now our next challenge comes in adaption, in making conscious though gradual changes to how we think, and  being in regular communication with one another about what we are going through now and where we want to be in the coming years.  Because that is one thing you can never really see on the battlefield- The future is only a wish or a dream.  For so long, we survived but now we have a future.  One we know is out there even if its still not crystal clear.  During lent we are both fasting and seeking direction for ourselves and our family.  Hopefully, by Easter we will emerge with a clarity that helps us adjust to a life that maybe has a few surprises but also has some consistency, some predictability, some stability. 

I am sure that all moms and dads whose children have had prolonged hospital stays and complicated medical issues feel changed by the experience.  Each of us carry our own scars- each the story of a victory, a survival.  Finding "normal" doesn't come without its challenges but I know in my heart it can happen.  What gives me the courage to try and find it is my daughter's smile. All her hospitalizations have been my stress, my battle- not hers! She isn't bothered, afraid, or discouraged.  She loves life, sees the wonder of every new face, item, ray of sunlight.  For her BJ and I will lay our hyper-alertness down. We will do it day by day, one choice at a time and in doing this we'll wake up one day and find ourselves- all of us- in a beautiful state of ordinary.

Your Happiness Gland

No, its not there. Pervert.  lol

The "happiness gland" I'm referring to still hasn't been located by medical science. Nobody can pinpoint that place in the brain- the location that decides to release the neurotransmitters that cause the physiological response that your prefrontal cortex, then decides is happy. Whatever medical science knows or doesn't know about emotions, it can say with absolute certainty that the process happening at a molecular level to produce joy is NOT connected in any way to a person's legs or feet. Yup. You heard me right. You don't need to be able to walk to be happy. Just ask anybody who is wheelchair bound. He or she will probably tell you (esp. if they have been rollin from the time that most learn to walk) that feeling your feet is over-rated.

Of all the things I was worried about when we got the diagnoses, the possibility of Evangeline not walking was what stressed me the least. The hydrocephalus was my biggest fear and we've faced that one and come out with the dreaded shunt no worse for the wear. *insert sigh of relief here*  When she was born wiggling her toes against the odds and the warnings, I was overjoyed of course but her toes weren't what made her so special to me. It was all of her. All she was going to be and do and see and love and laugh about.

Her orthopedic doctor has told us good things early on about her ability to walk unaided.  So have many other professionals.  Today, however, at her  P/T eval she was examined in depth.  The p/t said for the first time today that she may need to use a walker and other orthotics when the time comes to walk. She has some muscle tone issues in her arms and torso as well as her legs. This is why she isn't weight bearing and can't roll over. The extent of her current situation was a surprise, but it didn't upset me.  All afternoon I have wondered why images of a tiny, shiny pink walker didn't disturb me the way they probably should. Then, after returning from getting groceries, I sat down all tired out and asked her how her time with Grammy had been. She laughed at me. I asked her if she'd really had fun. She laughed some more. I asked if she was putting me on.  She giggled riotously.  And I laughed too.  Nope.  Her happiness gland is definitely not connected to her feet or legs or any other part of her chubby little body. Its a good life.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 131:14