This is Emma in May at Tampa Gen. Inpatient Rehab:

Thank you so much for all of your sweet comments on my “lamenting” post.  I feel somewhat more secure in our new normal, but it is still going to take me a while to come to terms with all that has happened since February 16th.  I think that when I was in the hospital with Emma, I was so focused on her needs “at that moment” that I didn’t {or couldn’t} process what was truly going on and now that we are home,  it has finally hit me.

We are finally getting into the swing of things on the home front.  I am abundantly more busy than before with therapies and homebound teaching etc…. but we have made such great progress!  Mark and I went to an Autism support group that was just started last night, and we both feel so much better and not so alone.  I was leary of going because I cannot do most of the “normal” autism treatments like the Gluten Casein free diet or not giving vaccines because of the medical side of Emma.  My fears were put to rest when I heard one women say that she was a Pediatric Nurse Practitioner and totally understood where Mark and I were coming from, medically speaking.  It has been really hard for me to find a support group because Emma’s ailments arent “just autism” and they arent “just medical”.  This seems to be a perfect fit, and it fits perfectly into my demanding schedule.

Home bound Summer School has been a great experience for Emma.  It helps she has the same teacher that she has had for the last three years… Ms. Laura knows how to talk to Emma, she knows when she simply “can’t” do something compared with when she simply “wont” and needs to be pushed.  Emma vision is improving every day, she now is reaching for objects (cups, her chewie etc.)  and she is navigating her surroundings better.  She still is very slow when she walks, and doesn’t like to be led.. but that shows independence and that is great!  She qualifies for blind services through the school board  and thus qualifies for Assisted Learning Devices (she will receive a Light Box today and already has a Big Mac which will help her communicate by pushing the large button when she needs something).  Her speech is slowly coming back, although we cannot understand anything she says other than the “No” and the “I dont want”.  Mostly she just speaks “Emma-nese”!

We are looking into Floortime and have heard wonderful things about this therapy.  If you have any experience with floortime, good or bad, please let me know!  I know it is recommended for children under the age of five, but Emma is developmentally between two and three years old.  I met floortime specialist that agreed that this would be great for her.  I am just looking for experiences with it.

So, all in all, she is doing extremely wonderful! She is making huge progress in all of her therapies (we have to wait until the school year begins to receive Vision Therapy, but we have had the therapist come to our house and explain to me  what to do with her until then.)

On the homeschooling front, Yes I am still going to be doing that next year… call me crazy but I just feel so led to continue.  I have debated what was best for family (private school) and I have prayed about that, and feel peace about continuing on with homeschooling.  We are taking the summer off, and Emma will be back in school full time next year, so my schedule will drastically improve as far as Emma’s demands are concerned.  I will be using a tutor (Hi Mrs Marconi!) on Tuesdays and Thursdays, and I will be teaching them Mondays, Wednesdays and Fridays.  It is a perfect fit for our family!

That is the down low on what is up around the George house recently! We are just living day by day….

sometimes moment by moment…

but we are still living life to the its fullest!

There is only two ways to live your life.  One is as though nothing is a miracle. The other is as though everything is a miracle. –Albert Einstein

Aren’t they beautiful.

Lament:  To express grief for or about; mourn

At church yesterday during the prayer time at the end of the service I started to silently cry.  Then the crying led to an audible cry.  And then, before I knew it I was trying to hold back the sounds of my tears.  Yesterday’s sermon was not really a sermon but a testimony time of the Women’s Retreat that I am so sorry I missed.  All of these women came back  refreshed, revived, RENEWED.

I need that. I want that.  I long for that. But something is holding me back from experiencing that.

Reading over at Sleeping with Bread this morning, Mary Lue wrote on Lamenting, and how it was hindering her spiritual growth, and how the sermon at her church yesterday pushed her to lay those things down at the foot of the cross.  It got me thinking about what was hindering my relationship with my Father, and thus I needed to lay down.

Guilt.  Failure.  Resentment.  Grief. Anger. Bitterness. Loss. Helplessness.

To say that I have been all of these things in the last three months is a HUGE understatement.  I have guilt that I cant get rid of, guilt about Emma and what I could have done differently or sooner.  Failure because I simply can’t do it all.  Resentment because my flesh screams “Why!” Grief over the loss of the old Emma, my old life, my old normal…again.  Bitterness because I just can’t let it all go.  Loss because everyday I am reminded of the things that she use to be able to do, but now can’t.

Helplessness, because I can’t fix this.

But I have to keep reminding myself that I know the ONE who can…. no matter how hard that is.

Emma was back in the hospital last week, but it was a quick trip. She went in because she had a urinary tract infection, and while there we opted to have a G-Tube placed. On Tuesday of last week she was officially diagnosed with Cortical Vision Impairment (CVI) by her Neuro-Ophthalmologist. We {Mark, I and her doctors} feel that the G-Tube is needed because Emma has limited vision and was not allowing us put anything in her mouth because she thought everything was medicine. If you have followed my blog for the past 4 years, you will remember that she use to have a G-tube that she loving called “nubbie”. She pulled it out when she was 5 and has not required one until now. The G-Tube makes it so much easier to give her medicine, and it helps her become reacquainted with food in her mouth (except for 1 med that we cant put in the tube). Last time when she had her nubbie put in, I really fought it. It seemed like 10 steps backwards because she had just come home and was free and clear of all of the tubes. This time, I actually begged for it. I hated to see the fear in her eyes when we would have to hold her down and force her mouth open for all of her meds. Now she can continue to do whatever she is doing while we give her meds.

I think one of the hardest thing for me to get use to is she actually sleeps through the night now. She NEVER slept through the night before, but now that she is on Phenobarbital for seizures, we have to wake her up in the morning! You would think that I would be sleeping through the night too, but my internal alarm clock is still set to her old sleep routine..{3am}.. so I find myself nodding off through out the day in the most awkward places {like her therapy!}

Every time I sit down at my desk, I am reminded about how very much my days have changed. I purchased a Vinyl Wall Calendar from Etsy to put above my computer, which makes it easier to see what I have scheduled and when I am free. I ABSOLUTELY heart it! I have something every single day for the next month except for Saturdays, which are usually out of the house days for the family anyways. I find that I am increasingly just wiped, yet I can’t find time to just “be still”. Every time I sit down for an extended amount of time my mind instantly races to what I have to do next {although sitting down for an extended period of time rarely happens recently}

Here is a peek at the month of June:

Do you see all the red dates? Those are Emma’s. Luckily I have the best husband and older children in the world who allow me to just go into my bedroom after dinner, close the door and get lost in my DVR! {Sometimes they join me!}

We are adjusting to our “new normal” …… one step at a time.

{On a side note, Emma’s 9th birthday is tomorrow! We are so very elated that the Lord has allowed us to have 9 wonderful years to enjoy her spitfire personality!  Happy Birthday precious angel, you are dearly loved! }

Something beautiful happened this week. Something that only God could do. Emma looked straight into my eyes and smiled, and she continues to do that every day. She is tracking objects and turning her eyes to my voice when I call her name!

I can’t tell you how happy this makes my heart!

I want more “beautiful somethings” to happen, Lord!

“Something Beautiful”
In your ocean, I’m ankle deep
I feel the waves crashin’ on my feet
It’s like I know where I need to be
But I can’t figure out, yeah I can’t figure out

Just how much air I will need to breathe
When your tide rushes over me
There’s only one way to figure out
Will ya let me drown, will ya let me drown

Hey now, this is my desire
Consume me like a fire, ’cause I just want something beautiful
To touch me, I know that I’m in reach
‘Cause I am down on my knees, I’m waiting for something beautiful
Oh, something beautiful

And the water is risin’ quick
And for years I was scared of it
We can’t be sure when it will subside
So I won’t leave your side, no I can’t leave your side

Hey now, this is my desire
Consume me like a fire, ’cause I just want something beautiful
To touch me, I know that I’m in reach
‘Cause I am down on my knees, I’m waiting for something beautiful
Oh, something beautiful

In a daydream, I couldn’t live like this
I wouldn’t stop until I found something beautiful
When I wake up, I know I will have
No, I still won’t have what I need

Hey now, this is my desire
Consume me like a fire, ’cause I just want something beautiful
To touch me, I know that I’m in reach
‘Cause I am down on my knees,
I’m waiting for something beautiful
Oh, something beautiful

My mom came up to the rehab center  while we were there and brought Emma (and me) and plaque that stated “Good things will happen today.”  I  nonchalantly hung it on her window in her room at TGH and every once in a while I would read it in passing and smile and go on my way through the various therapies scheduled for that day.

Today, as a sit on my lanai, it hangs over the table.  Every morning, when I come out and drink my coffee and have my quiet time, I see it.  But today I really see it.

And I get it.

No matter what today entails,  no matter what each moment holds- Good things will happen.  Good things always happen amidst the bad.  You would think by now, with all that I have gone through, I would have learned that.  You would think that it wouldn’t take a plaque hanging on a lanai wall to get me to really get it.  You would think that I would have mastered the art of looking for the positive in all situations by now.

But I haven’t.

And that is okay.  It is okay for me to be angry at this situation.  It is okay for me to mourn for the loss of a child, because that is what it is, the loss of the old Emma.

It doesn’t mean that I have lost hope.  It doesn’t mean that I don’t marvel at the new things she is doing, or the good things the Lord is doing through her.

It simply means my mama heart misses the old Emma.

And that is okay.

But in that, I have lost sight of the “new Emma” and I don’t want to do that.  I never want to do that.  Because in doing that, I lose sight of all the miraculous and wonderful things that He is doing in her.

All of the “Good things” He has done.

So, amidst the pain and heartbreak that I have felt, I am looking towards the good.  I am turning my face to Him and letting those words fall on me like rain…

I think that the hardest thing I have had to come to terms with is that Emma is partially blind. Being autistic, that was her main means of exploring the world around her, and now it is damaged, impaired, lost. She use to love to sit and look at books, that was her biggest joy in life. I often wonder if she even realizes that she sees differently and I wonder how she sees, which is a very hard thing for me not to know. When she first came out of the medically induced coma, there was no light in her beautiful blue eyes, there was just blank stare that honestly scared me to death. The light has come back in some ways, it is just different. I remember the distinct difference in her eyes when she was seizing in my arms. It was a soul piercing stare, and I was totally helpless. A mother is suppose to be able to comfort, and there was no comforting her in those scary days.

Now that she is home, I see glimpses of the old Emma. She is a more “content” Emma, but the “old” Emma sometimes peeks through. She is not talking much, which is totally different. Mark, I and Marks mother were talking last night while Em was laying on the living room floor with her blocks, and I just started to cry. I remember her playing with those same blocks before the seizure, stacking them and naming the colors. I miss the old Emma. I miss her laugh and vivaciousness. I even miss her non compliant attitude.

I just plain miss her.

Every day she is coming back, and her brain hasn’t completely healed. There is a possibility that her vision will come back,  I have to keep remembering that, but when I see her struggling to do the things that where so easy for her to do before, It just breaks my heart.

It is going to take me a long time to get use to our “new normal”, and I honestly have questioned if I have the strength to face this yet again….

But then I see those beautiful blue eyes, and all is well in our little “non normal” world again…

A Blind Child Speaks
I may not see the way you do
With eyes so bright and quick
But I know where flowers abound
And where the grass grows thick

I know if you are kinda little
And I know if you are tall
O I can see so many things
YOU may not see at all

I use my ears and hands for eyes
And make them see for me
I listen hard and gently touch
And thus it is I see

God must have a reason
For making me like this
Perhaps He meant for me to see
What other people miss!

• She and I both want to say a VERY HUMONGOUS THANK YOU! When we got home on Thursday, there were not only one but THREE boxes of cards from you all wrapped up in adorable baskets! (Thank you Lisa B and {in}courage for putting that together for us!) You guys will never know how much your words brightened my day…
• She did absolutely fantabulous at inpatient rehab.  So fantabulous, in fact, that she only had to stay for 2 weeks! More on that to come, but did I mention she did fantabulous?!
• She is becoming more and more like the old Emma every day! She lost most of her speech and sight from the swelling on her brain, but she is saying some of the old things that she use to say (like “dead gum it” and “NO!”) She has said Mama, Nana, Walk and other random words that we don’t yet understand …
• SHE CAN WALK!  Did I mention that SHE CAN WALK!! She has a wheelchair for safety because we do not know how much vision will come back, but if you walk beside her in the house and out side, she only uses your leg as a guide (and sometimes your hand..)
• She still makes all of those little noises that I have longed to hear for the past 3 months!  I will never again tell her to “shhh”

She is still in there, and it will take alot to get her back out, but she is up for the challenge and so are we. This past three months has solidified our belief in miracles more than any other even in our lives and we are so very thankful.

Today will mark 10 weeks we have been at All Children’s Hospital. 10 weeks. I can hardly believe it has been that long.

One of the many things I have learned in these past ten weeks is how very vulnerable my walk with Christ is. I have been attacked many times by satan tempting me to abandon my faith that the Lord will do what He says He will do. I have cried more than any mother should cry. I have been numb, angry, depressed, heartbroken…wash rinse repeat.

Yet the one thing I have never felt is abandoned. I have always known, even in the darkest moments of the past 10 weeks that my God has not abandoned me or my daughter. I have never lost that nagging hope in the back of my heart that says “Be still and know that I am God. Watch what I am about to do.”

That has never left me.

Emma’s EEG yesterday showed no breakthrough seizures. She is down in MRI while I pack up her room. We are going to Tampa General for inpatient rehab if all goes well with her MRI this afternoon.

Honestly, as odd as it sounds, I am going to miss being here a little. This has become our second home, and it will be sad to leave (and a little frightening). But on the other hand it will be great to go to the next phase of this journey. It will be a lot of hard work for her, but it will be such a joyous moment to see her be able to do things that she is not able to do just yet.

She is like a baby, and will have to relearn how to do the smallest things. The last week that she was in school they did a developmental test to see at what age she was developmentally. My dad went and picked it up yesterday for the therapist at Tampa General Rehab. Honestly, I can’t bring myself to open it. I can’t bear to see where she was then compared to now, it is just too hard at this moment.

This is all just too hard.

But then those words keep me sane..

“Watch what I am about to do.”

I am watching Lord, show me.

Today is the first day in three weeks that we have seen her smile and heard her beautiful laugh! There is actually life in her eyes, though they still are not fixing on anything in particular… But she was bouncing in her wheel chair and twirling her head so she could feel her pigtails She is making the same noises that she made before the seizures, but she still is not talking, only making sounds. That will come in time

Tomorrow we have a big day planned full of EEG monitoring in the morning for a few hours to rule out any breakthrough seizures and then in the afternoon we will have an MRI to see how her brain has healed.

I am just so very superbly ecstatic with her progress, and so are the doctors and nurses Yesterday she could not suck from a straw and today she can suck if you stick a bit of liquid in her mouth and then quickly put the straw in. Yesterday she could not hold her own food and put it to her mouth, today when you place a french fry in her hand she automatically puts it in her mouth and takes bites. And obviously yesterday she wasn’t smiling or laughing… This afternoon she started moaning, so we put her in her wheelchair and fed her chocolate pudding. As soon as we rolled down the hallway she started bouncing and shaking her head.. then came the little giggles that we have sorely missed! We attribute the “great awakening” obviously to the Lord, but also to the chocolate pudding she had right before she came out of her shell!

Thank you for your continued prayers… they are obviously working

Today has been full of small miracles!  She is eating and swallowing on her own (you have to put the food in her mouth, but she goes for it with her tongue!) She has some purposeful eye movement.  She is able to sit unassisted and hold her head up straight.  She LOVES going for wheel chair rides outside! (We are renting a wheelchair for her)  She is consistently raising her hand so that daddy can do “this little piggy” with her fingers She picks her nose, rubs her eyes and clicks her teeth just like she use to do!

She is still in there… We just have to find the right method to getting her out.

She is going to be moved to Tampa General Pediatric Rehabilitation Center Tuesday or Wednesday.  She has an MRI scheduled for Monday, so be praying for that.

I just want to thank all of you for all of your supportive comments to our posts.  This has literally knocked us to our knees and turned our world upside down.  Knowing that there are people out there who are interceding for her (and for us) means so very much… This is going to a very very very long road to recovery, yet I am confident that with your prayers and our help,  she is up for it.

Thank you again,

Mark and Heather