What it Means To Be Loved

So, a good friend sent me a link to a great song that pretty much explains everything that has been and currently is going on in my life.

Mark Shultz 

What It Means To Be Loved

I've been listening to it on a loop for 2 days. I cry every single time I hear it. Sometimes because it makes me sad. And it feels like the tears help to clean out my heart. Sometimes because it makes me proud. Proud of my decisions, my character, my journey. Sometimes because it just feels good to hear someone else say the words out loud. 

Here are the lyrics. 
The link to the video and song is attached. 


For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
And could you come in soon
Then something died inside of me to sit with him and hear
The tests that said our baby may not live to be a year
Then turnin' to my wife and he said "whata you wanna do?"
And she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

So we spent each day, watchin' every minute
And prayin' for our baby girl
And I will not forget the way I felt that moment
When she came into this world
But they took her from the room just
as soon as she was born
And watchin' through a window I could see her holdin' on
When a voice inside me said...

I wanna give her the world
I wanna be her dad
I wanna hold her close for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

I said everyday
we've got to bring her home
she's been out to prove the doctors wrong
Oh and you should see her now
she's as pretty as her mom
And there's a boy at the front door
waiting just to take her to her high
school prom...

And he wants to give her the world
Wants to hold her hand
And someday she may get a wedding band
But she's gunna live every moment until that day comes
And we're gunna show her what it means to be loved

Oh yeah (what it means to be loved)

Show her what it means to be loved
What it means to be loved

http://www.youtube.com/watch?v=DJOSMB0QhFY&feature=youtu.be

A Super Stander!

She did it! She REALLY DID IT!! Lilly is finally standing. Given, it's assisted, and it's not for too terribly long....but she's doing it!! She's really doing it.

While most parents of a 13 month old wouldn't think this is such a big deal, the sight of their child standing, this is an INCREDIBLE MILESTONE for Lilly and frankly, it brings tears to my eyes every time I think of it.

It's so nice to even be able to USE the word MILESTONE! Finally.
MILESTONE. MILESTONE. MIIILLLEEEESTTOOOONNEEE. MILE-STONE. Mi-Le-St-On-Nay.

She has worked for so long, and been through so much to get to this place. I watch her work in 3+ physical therapy sessions, and 2+ occupational therapy sessions a week since she was 4 months old. I hear her groan and squeak as she is propped and prodded into various sitting, crawling, standing positions over and over again. I stand in the back and I watch her tiny arms shake and bend. I have seen her struggle against gravity and even the weight of her own body, for over a year now.

In a way, it makes me sad. To know that she will have to work really, really hard at everything in her life. From sitting to eating to brushing her teeth. All of the things we take for granted. None of those things will ever come easy to her. Everything will take more time, more effort, more perseverance. And as a mom, this is a heartbreaking realization. A very large pill to swallow. The last thing any parent wants, is to see their child struggle. You just want to make it all better. But I cannot. And it kills me.

But, man, you should she the look in her eyes when she's up there. Her knees locked. Her back straight. Her hands clenched onto mine. Her teeny, tiny hips swaying. Her toes curled. She's seeing the world from a whole different angle. Experiencing independence that she has never had before now. And from what I can tell, she is L-O-V- E ing it. A few times she has even pulled her hand away from mine. As if to tell me she wanted to do it on her own.

Unbelievable.

This is the child they said would never be born alive. That would have no quality of life. That would never smile, or communicate, or ever give back.

Unbelievable.

Today, I am happy. Happy. HAPPY.
I am the PRESIDENT of her fan club.

Today I couldn't be more PROUD to be Lilly's mom.

**My Musical Munchkin**

Every Saturday morning for the past 10 weeks or so, we have taken Lilly to an infant music class called Musical Munchkins. After 10 months of hospitals and therapists and well, me.....we decided that it may be a good idea to pry her from our protective bubble and expose her to some of the other babies her age. We decided that the best idea would be to put her in a mainstream music class for 'non-walkers'. We have also heard that music therapy is a great source of stimulation for hearing impaired and/or developmentally delayed children.

While most of the other babies are younger, they are already crawling, sitting, scooting and moving around like crazy. And I have to admit, it stings a little that Lilly isn't able to do the same. I watch the others sitting upright, banging and squealing with delight when the drums come out. Instead, Lilly's face searches the instruments as they are set up. She holds a skeptical look in her eyes. I hold her closer against me and guide her hands over the drum's thick skinned top, gently tapping her tiny hand under mine and swaying with the rest of the class. 

Sometimes I find myself looking around to see if others are watching and/or judging her. Because I am both protective and paranoid. I find myself trying to fend off their pity with my widest smile and laughter. At the end of the song the other mom's ask how old she is. I put on my bravest, most unapologetic face and I proudly tell them that she is indeed, 1 year old. 

I fear that as she gets older, her differences will become less easy to hide and more apparent to the outside world. Because for now, the world just assumes that she is much younger than her actual age. I am certain that will be a difficult thing for me to deal with. Difficult, because I do not want her to be judged. I do not want her to be singled out. I do not want her to feel that she is less than other children her age.  Because, I want to protect her from ignorance for as long as I possibly can. 

But until then I will continue to practice my bravest, most unapologetic face and my widest, widest smile. 

Progress Report

Well, Lilly has been out of the hospital for a little over 2 months now. With only a couple of minor scares. This is the longest that she has been hospital-free in her entire life.

She is doing well and really picking up the pace developmentally. She has been approved to do make up sessions from all of the time she missed out. Often, doing up to 12 hours of therapies a week. For lack of a better description, she is working her butt off.

She can roll over now from belly to back and back to belly. Although, she is still uncoordinated and inconsistent, and often gets stuck with her arm trapped underneath. But the tenacity that she is showing leaves me hopeful that she'll get the hang of it pretty soon.

She has finally started to sit **propped**.  Meaning, that as long as she keeps her hands on the floor she can sit up by herself for a few minutes. This makes folding clothes a little easier for me because I can actually use BOTH hands. We are waiting for her Theratogs suit to come in from EI. It is a special suit that is designed to provide trunk support for children with low muscle tone. I am hoping that with this suit she is able to sit up and play with her toys for more than 5 minutes at a time because I sense that she is growing very, very tired of lying down all the time. She almost seems frustrated that her mind wants to go but her tiny body just can't quite get her there (yet).  If all continues to go well, in the Spring/Summer, her PT would like to start working on standing.

While she is out of the hospital, she will still need a lot of outpatient testing and follow ups. She will need a sedated MRI of her spine to see if there is any sort of abnormality leading to her developmental delay or in some cases it can even be related to shunt failure and/or kidney reflux. She will also need to have a renal scan done to see the actual function of her kidneys and it will also assess the amount of scarring that has been done from all of the previous infections. She will need to do another sleep study to see if she has out grown her sleep apnea, although this is unlikely. She will need another ABR hearing test to see if her hearing has improved now that the fluid on her brain has been controlled. She will also need to be sedated for this. Her neurologist would like for her to have an EEG, which tests for seizures in the brain. Sometimes, they can happen without having an outward appearance, or can be tied into the reason for her sleep apnea.

But the biggest medical decision we are facing right now is whether or not to have a G-tube put in to her belly to help with her weight gain. A just over 1 year old she is just shy of 14 lbs. While we don't expect that she will be a big person, she is now falling off a healthy weight curve. She has been eating the same volume of food for almost 6 months now. And introducing solids has been a tough road, since she seems to have some sensory issues. The tiniest piece of a solid cookie can cause pretty significant vomiting and wrenching. Overall, just not a pleasant experience for ANYONE involved.

We will meet with a GI doctor at the end of the month to discuss the pros and cons of a G-tube and have an upper GI series done to see how much of the eating issues are related to reflux and stomach emptying issues. After that we will hopefully be able to make a decision and move forward, as feeding has been a major issue since the day she was born. I will certainly NOT miss the days of toting around a notebook and pencil to track every ounce she drinks.

The **New** Me

No, it's not the way I had imagined my life. And definitley, not the life I would have chosen. Being the full time caregiver to a special needs child is demanding, sometimes ugly and extremely busy to put it nicely. I am not only her mom but her voice, her assistant, her advocate, her nurse, her therapist, her coach as well as the main source of her physical and emotional support. But you want to know something really crazy?  I wouldn't change it for anything in the world. As every child changes the life of their parents indefinitely, Lilly has changed my life in a way far beyond what I ever thought possible.

I have discovered that you do not know love, until you are faced with the possibility of losing the life of your child. And while I sometimes think I have lost myself, I quickly realize that I have not lost anything, but have simply changed into the person I was meant to be all along.

Lilly's Story. 9 months old.

My beautiful daughter, Lillian Josephine was born with a rare genetic disorder. It is called an unbalanced translocation of chromosome 8 and 10. In simple terms, a portion of her 10th chromosome got stuck onto chromosome 8 and a portion of her 8th chromosome got stuck on to chromosome 10. While this doesn't seem like such a big deal, when unbalanced,  it actually causes a laundry list of congenital disorders and anomalies. 

Because we found out her diagnosis early in the pregnancy, doctors told us that there was a good chance that she would never make it to term, or that if she did, she would not be born alive.  We were told that 'these mistakes usually take care of themselves'. They also told us that there was a good chance she would not thrive if she did make it. Needless to say, it was a long and stressful pregnancy. I prayed and pleaded each and every minute of those 40 weeks. I clung to each kick, hiccup and roll as a sign that she was going to make it. And on her due date 2/26/10 she was born by emergency c-section weighing in at 4 lbs 10 oz.

She spent the first 7 days of her life in the NICU.

While she is only 8 1/2 months young she has already been diagnosed with hydrocephalus (excess fluid on the brain), hearing loss in both ears (she wears hearing aids), eye abnormalities, central sleep apnea, feeding difficulties, heart disease (aortic stenosis), kidney disease, hydronephrosis (swelling and excess fluid on the kidneys) kidney reflux, GERD, low muscle tone and developmental delays. In addition, her condition causes her to be very small for her age. She is almost 9 months old and weighs about 12lbs. 13oz. (the size of a small 3 month old).  

At 2 1/2 months Lilly had surgery to place a shunt placed into her brain to help drain fluid. This is something that will need to be monitored (and perhaps have revised) for the rest of her life. She has spent about 37 days in the hospital so far for things ranging from urinary tract infections, sleep apnea, respiratory issues, feeding difficulties, kidney issues, low calcium, high potassium, and numerous other complications. 

At home she receives physical therapy, occupational therapy, speech/feeding therapy, infant massage and she also has a nutritionist. To date, she has about 11 specialists that monitor her health very closely. 

Along the way we have been told things like 'these children are a lot of work that will not pay off in the end'. That we would 'never get back what we put in'. That her future (if there is one) is 'bleak'. Insinuated that she is a throw away and told us that we 'deserve to go on to have a normal child'.

Well, in my opinion, those doctors and their text books can all go to hell.  She is an amazing blessing. A magical child whose smile can light up the room. She eats and plays and sleeps like a typical child, only with a twist here and there. While certain things take her longer and require more effort, she is tenacious and strong willed. She loves going for walks, listening to music and exploring her world. She is patient and loving and has an infectious giggle that can bring a grown man to tears.

There are no other reported cases so there is little known about this rare chromosome disorder. So for now, we take things one day at a time. And when possible, find humor in the things that we can.  She has taught us so much in her short life. Things that we thought we knew, but could not, until now. Things like patience, tolerance, unconditional love, compassion, understanding, and strength. And most of all, she has taught us to never take one minute, one smile, or even one coo for granted.  

And although it may seem weird to the world, we are excited for the future, ready to face the challenges, ready to prove them all wrong. She is not a diagnosis or a mistake. She is not broken or incomplete. She is not temporary or less than.

She is my perfect daughter.