We just got back from a visit to my parents for Easter.  My mom is definitely G's best friend and he always has such a great time there (as do we).  Here are just a few of our adventures....

My parent's cat had kittens!!! Garrett hauled them all around and they were such good sports.

My dad doing the classic "airplane" feed.

My grandma, Lilah's great-grandma.  She's tiny and makes L look huge:)

Egg dying!! G had an interesting technique..'.whole-hand-quick-dip'.

Swimming in the not-to-hot tub.

"Ahh-Ew".  This is how G says ah-o (how do you spell that anyway?)

Family pic.  Best we could do:)

Our little bunny (note the 2 bottom teeth).

When I quit working before Garrett was born, I thought: This is it. This is what I've been waiting for. I had visions of leisurely mornings in my pajamas, playing with babies and sipping coffee before heading off to the gym. y e a h. r i g h t. I did get the pajama part right:).

Everyone always says how parenthood forces you to be selfless, but I've got to say....I am not feeling it. I am feeling more selfish as the days go on....thinking of all that I've given up, the sacrafice I make, the burdens I bear.

I don't delve into lots of "resources" for parents of special needs kids because a) I don't have time, b) I really, really do not want Lilah's problems to define her, me, or our family and, c) I am sick of people telling me that she's such a gift because Taking care of her is an incredible burden and it sucks!!!! For me.

I miss the days that I could watch the news without drifting into thought about whether her meds need adjusted, how to treat the newest sore, or when she got her last breathing treatment. I want to rock my daughter without the tether of tubes and machines. I am tired of planning my life around doctors and therapies. I wonder if I will ever be able to leave her. And, I am tired of being a prisioner to it all. I wish I didn't feel that way--it feels ugly, bad, selfish.

For those of you gasping in shock....it's ok. You don't need to call my husband (he knows) or a counselor (he'd say it's normal). I am not about to jump. And, it's only half of the story--of course I love her....she is not a burden. The truth is, she is a gift. Lilah herself is beautiful, joyful, and totally innocent. It's the suffocating burden of responsibility and tasks that I hate. I write this because it's (painfully)true, and I hope that I look back someday from a different 'place'. A place less focused on me. A place that is focused out, instead of in.

I am relating to the Easter story a bit differently this year. In a tiny, tiny way more aware what it means to die so that another might live. It makes me ashamed of my self pity--that Jesus died and rose again, for me. And realizing....in that, lies my freedom.

Tubes went great! Granted I don't have a lot of outside entertainment these days, but it was kind of fun....or funny, at least.  Garrett was absolutely hilarious and a perfect patient.  They gave him the "happy juice" and said he's be asleep or very groggy in 10 min.  15 minutes later he was saying "whuuuzzzzz uuuuupppp" and making eyes at the nurses, like a 20 year old at a keg party.  Other than a little post anesthesia crankiness, there was no aftermath, no recovery!  We are so glad to have it over and I'm looking forward to removing 1 patient from my list:).

here is Ya doing some 'tummy time'

my niece feeding her "lilah" through her belly

fyi, here is her tube. kind of hard to see on here.  there is a "button" on her belly (which is held in place on the inside with a water inflated balloon).  you open the top, put on the connection tube, and gravity pulls the food in via syringe.  

the paci posse....I was going to get rid of the paci when he was two...then L was born, then she got sick, and then I got tired....now he is going to have it until he goes to kindergarten:)

Today I have a lot of questions....

1.  why can I not get organized?

2.  are those "word verifications" on websites real words?

3.  why did Dante omit  'taking both children to overlapping dr appts during toddler nap time'  from his circles of hell? 

4.  can someone tell me a stress reliever that is not illegal, or unhealthy, takes little time, and

can be done with your children watching? (this is not a joke, really asking here)

5.  how come no one told me that coffeemate has calories? (at 3 cups/day, the math is not

pretty)

6.  do people here really say words like "therpy" (therapy) and "swallered" (swallowed) and

"yuns" (you ens--- as in, "do you ens wana go to Cracker Barrell?).  I heard all of these in

the waiting room, right before I turned my ears off.

7.  will things EVER calm down here?  

We took Garrett for an ENT consult today and to make a very long story short, he's getting tubes tomorrow at 10 am.  Tomorrow?!   With all that we've been through over the last few months with Ms Lilah, this really doesn't seem like that big of a deal (but, I am learning--and will bring tissues for sure!).  That in itself kind of makes me sad....am I really so emotionally exhausted that I can't generate some stress/fear over my child's surgery?  I am most worried about how to keep him from driving me batty for juice in the a.m. (by the way, I just told him he could have all the juice he wanted now, but none in the morning and he started crying--good luck to me).

Lilah is doing great! She's gained a pound in a month (great for us--15.4lbs total!) and.... drum-roll please....she rolled over! She continues to perfect the monkey shriek and is really enjoying lots of toys.  I'm starting to shop for some more "activation" toys...she loves lights and music and mostly, herself!

*8)  why can I not figure out Blogger spacing ???

G in his tent

I have learned a lot in the last year.  Add "never leave the house without tissues" to the list.  Paul and I went to a funeral last night (ahh...date nights).  Now, anyone would think to bring kleenex to a memorial service, right?  The thing is, this was the father of a friend (I didn't know him), who had a poor quality of life for years from illness, was 98, and went to heaven.  Honestly, I was happy for him (just sad for our friend).  Between that and rushing out the door, I had definitely not prepared myself emotionally.

We get there, give our condolences to the family, and sit down....and Paul and I whisper back and forth about how long we think it will last and where we will eat afterwards:).  Then, I look at the service program and see the verse "Precious in the sight of the Lord is the death of His saints." (Ps 116:15)....and my lip starts to tremble.  Oh no.  And then several scriptures are read....and by this time there are tears running down my face.  There is no going back at this point-the switch has been flipped--I am crying. Crap!  My sweet husband leans over and says, rather confused, "Gina, you didn't know him."  More tears.  Snot.  And then, "But, Gina, you have never even met him!".  This got me tickled and the emotions morphed into a laugh/cry (if you were sitting behind me at New Prospect Church in South Knoxville last night, I am sorry).  I was able to "pull it together"....until "How Great Thou Art".  That did it....waterworks ala The Notebook.

"If we ever go to a funeral of someone we know, you are screwed."--this is what Paul says when we get to the car.  Ahh, the compassion! :)  Anyway, all I could think was that someday, we might be 'there' celebrating Lilah's life.  I won't go into too much detail, because I really try to not dwell in those kind of thoughts.  But then, the thought hit me "what if something happens to me?".  I could type for days on the burden of being her primary care taker, but that's another discussion.  

When trying to explain my emotion to Paul, all I could get out was "this is the first funeral since".  Since our baby almost died.  Since she lived.  Since she was diagnosed.  Since our whole lives were turned upside down.  Since everything is different.  Everything is different.  Or maybe everything is the same and I am different.  Or maybe everything is the same and I just see things differently.  Crazy as it sounds, I'm thankful for the 'vision change'....things seem clearer.

Found this "optional" verse--love it!

When burdens press, and seem beyond endurance,
Bowed down with grief, to Him I lift my face;
And then in love He brings me sweet assurance:
'My child! for thee sufficient is my grace

Does anyone else feel like parenthood is just a big 'eat your words' fest?  I can vividly remember rocking Lilah in the hospital back in September, after we were out of ICU and had the seizures under control, and thinking "I will hold this baby and never put her down", "I don't care if she never sleeps through the night", "I will treasure every moment".  Yeah....I didn't make it very far:). 

For the unaware, I am a very "unpracticing" speech-therapist.  I love, love, love communication....it's what allows us to know each other, learn about the world, get what we want, etc.  There is nothing better for me than hearing what a child has to say.  Anyway, when we sat in our pediatricians office and got the news of Lilah's chromosome abnormality, the first thing that came to my mind was "I want to hear her voice.  I might never hear her say 'mama'."  She has been an extremely quiet baby--didn't cry when she was born and hasn't cried (a newborn 'whaaaawhaaa', that is) since.  She makes all kinds of  quiet, grunting noises, but no cooing, no consonants, no vowels.  This is not a good predictor of speech:(!

That was a very long intro to say "be careful what you wish for"....WOW!  Miss Lilah has found her voice and she is not letting up.  The first time I heard 'it', I was upstairs in my bathroom and thought maybe Garrett had picked her up and dropped her right on the floor--it's that intense. 'It' was so sweet the first day....we were so proud of her for trying so hard:)  The second day, Paul and I started the 'it's a phase' and 'she's just trying it out' reassurances to each other.  Day three was more like "please God, make it stop!".:) 'It' sounds like a mixture between a wounded cat and a shrieking monkey and she loves it.  Formerly paci-loving, Lilah won't take her paci.... b/c then she can't make the noise:).   She loves to look in the mirror and watch herself make the noise.  When she wakes up, it takes her a few minutes, and then she remembers "oh yeah, I can make the noise."  It's great to hear her voice...but, boy is she loud!

It's business as usual around here....lots of medicines, creams, drops, treatments, and sprays--and fervent prayers to get off this oxygen and out of the house!  Unfortunately, that will be no time soon.  L is having some more pronounced "lung issues" and can't be weaned from the O2 soon.  This is the biggest thorn in my side (not to mention hers)--I cuss that huge machine.  It's heavy, loud, and totally ties her down.  Trying to be thankful that we live in a time of modern medicine, but not always so successful.  She is getting much stronger, and that has got to help her breathing!  She has started physical therapy and I notice improvements already...Lilah is not so sure:(.  It's very hard for her and she would much rather lay on her bean bag chair and chew on her paci!

we busted out the spring clothes yesterday...see the arm rolls??

knees pulled up and arms reaching....woohoo!

poor G is having trouble getting rid of his ear infections....this one pretty much sums up his mood:)