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:)

Healing

wildly popular bean bag chair:)

I've been doing a lot of thinking about healing lately because: 1.  my church did a series on the topic,  2.  it's come up several times in my devotional, and 3.  random people in public keep asking me about if Lilah will be "okay".  One of the weird things about having a child with so many 'problems' is that you kind of have to come up with a party line--you know, what you say about "it" when people ask.  Otherwise, you end up screaming at a poor, defenseless, and very old lady in Walgreens, who just wants to see your baby, who is asleep and covered by her baby carrier (which dons a sign that says "please wash hands before touching me"), "DON'T TOUCH HER SHE HAS HEART DEFECTS!!!!!!" Or, you see an old acquaintance, and because a) you kind of wish you never had to see anyone again, and b) you are not prepared with the party line, you burst into tears in very awkward places.

Anyway, back to the random people part....because of extraordinary circumstances, I took Lilah to BabiesRUs not too long ago (obviously not thinking clearly because..... all expectant mothers want to see a baby on oxygen...no?).  The check out lady: "she's going to be okay, right?".  Me: pause...."uh".  Check out lady:  "I mean, she'll be okay though?".  Me:  pause, pause, pause, "well, uhm".  Check out lady:  "But, she's going to be okay."  Me: "Yes"(because, please just give me my receipt and let me escape).  I did not have the party line ready and I still can't figure out how I would have answered that if I was ready.  "It depends on what your definition" of okay is  (little known fact--I voted for him--I blame youth, and the saxophone).  I think the check out lady meant, "Is she going to die?". The short answer is 'we don't know' and the long answer has more to do with "will she be healed?".

The best, and only, marriage advice I carry with me remember, came from my father-in-law after our rehearsal dinner.  He said, "The reasons marriages fail is because of unmet expectations.  You should not carry expectations"....or something to that effect.  I am trying to apply the same lesson to Lilah....not to impose my expectations of what healing looks like on God's plan for her life....and, trying to trust that He can heal, without expecting Him to.  Clearly if I had my way, God's healing of my daughter would be of the "seven dips in the river to complete healing" variety.  The ironic thing is that, as I begin to let go of my expectations for her health and development, my eyes are opening to all the ways He has healed her already.  She smiles, she is engaged, she knows us, she's gaining weight, she's getting stronger....these are truly gifts to us...things we did not expect.  And, gifts you don't expect are much sweeter.  Those things remind me that God hears our prayers, and is doing a mighty work in Lilah's life and in ours.

So, in case you were afraid to ask...the party line around here on healing is "Yes"! Maybe not yet, but for forever and fully.

"Behold, I will create new heavens and a new earth.  The former things will not be remembered..."

Isaiah 65:17

Happy March everyone! We are good here....really not sure how this is possible, considering everything on the plate (new job, new insurance-which is a nightmare when 20 agencies/doctors/pharmas have to switch, sickness, gas leak scare, etc).  I took Lilah in to the pediatrician yesterday because; well, kind of just because.  She had an eye infection (which they could have called drops in for her) and a lingering bit of a cold, and I just felt like I should.  The night  before Garrett was up all night getting the nasty cold that had landed Paul in bed the entire weekend.  To make a long story short, I ended up taking him with me and.......both kids had "wheezing" in their lungs and ear infections!!!! Are you kidding me? No fevers and no complaints.  Clearly my children heard Dr. Joe say how sick they were and believed him, because the fussing started with full force on the way to the car (and has not eased up!).  I was hoping for some more tasks around here (haha!), so now both kids are getting breathing treatments 4x/day and 2 more medicines.  FYI-you have not fully experienced the breadth of parenting until you have pinned your 2 year-old, WWF-style, (who is screaming like you are holding a rattlesnake over his mouth) for the endless minutes it takes to complete the "treatment".

Lilah had her feeding tube changed out for a new "style", which is smaller and lower profile.  As with all her things, there's a learning curve; but, I'm excited to be rid of the 10 inch plastic tube that dangled from her belly.  They taught me how to put it back in her stomach if it falls out...I am praying this never happens, because I am still very nervous about a big hole in my baby's belly.  She is sleeping a little better after many theories and desperate attempts (and threats to take away every promised 'perk' of fighting though heart failure, starting with the pony, that were whispered in her ear back in the fall).

In all honesty, I feel like the fact that we are getting through the days with any kind of sanity is a total miracle.  Most days, I am a little less overwhelmed than the day before.  I am certain this is only by God's grace, His provision for our every need in each moment, and the faithful prayers of so many---a thousand 'thankyou's! 

I've had many pity-party-tears over how Lilah's issues have, do, and will affect the brother/sister relationship.  More specifically, it breaks my heart that he can't love on her or play with her...........

as I had "envisioned".  

But, look how sweet this vision is:

In this last one you can see Garrett saying "look", as in "look, I just dropped her head":) The photo session that had required mucho bravery on my part (not to mention Lilah's) ended then. But, I think it was worth it.  Love these babies! Has anyone else noticed that when you are seeing your kids together, your feelings more than double (as in 2+2=>4)?

On a "same but different" (totally different) note...I am fired up! 6 more days until The Bachelor finale!!! I can hardly contain my excitement.  Sorry to disappoint, but I am addicted to "crack" tv!  Tonight: The Real Housewives of ______ (not to be confused with Desperate Housewives, which I also watch).  Don't make fun of me...it's therapeutic.

I'm very behind.  That pretty much sums it up around here:) But, specifically, I'm behind on 'blogging' because PAUL HAS BEEN OUT OF TOWN FOR 3 WEEKS!!!!  I've had things to say and stories to tell, but I felt like I didn't want all of "cyberworld" knowing the head of the house was gone:).  That's right...New Jersey for 3 solid weeks!  I We are really happy to be on the other side of it and it was not easy.    I have to say I'm really proud of myself....I did it..."by myself", as Garrett would say.  Actually, I had loads of help from my mom, Paul's mom, Aunt Liz, and Marissa (who is a nursing student helping us a few days a week-a total answered prayer to have someone to give Lilah undivided attention and free me up a bit).

Lilah (aka: Yaya, Ya, Angel, Sister Sue, Mouse, & Sissy--I have always hated this one, but Garrett uses it endearingly) is doing great! Getting huge bigger, smiling, making her own little noises, and starting to imitate some mouth movements.  She loves to hold and suck on crackers or pretzels (Paul and I are so proud of this, you'd think she was running!). Her scale is tipping a bit more toward "fear" in regards to her big brother, telling me she is definitely "with it".  Her physical therapy should start soon and is desperately needed.

Garrett is testing my every last ounce of patience...and getting the better of me most days:)  They don't call it "terrible twos" for nothing! They also say "kids keep you young"--I have to say....I am not feeling it!

Paul is loving his new job with Cortis, a division of Johnson and Johnson and just got back from 3 weeks of training.  He is a sales rep for the endovascular division (I always screw up his job descriptions, so I'm sure this is not just right).  I have to brag on him, though:) Paul is the only person I know that has turned down more job opportunities than he's taken....he regularly gets calls from companies who are pursuing him, despite the fact that he isn't looking for a new job.  I am not surprised though--he's great at what he does and he's one of the most humble people I know (which is why he will probably 'have my hide' for writing this:), and incredibly loyal.  It was a tough decision because he really enjoyed his previous position and all the great people there.  We felt peace about the move and I'm incredibly thankful that he's enjoying it and, I know he'll do great!

I could probably write for days about our emotional status (fair, and improving) and adventures while house-bound (why does everything break while your husband is away?), but I'll save it for another day.  I take Lilah to her cardiologist tomorrow and have high hopes that we might be able to get rid of the O2 during the day, on a trial basis.  I'm trying not to 'count my chickens', but I am dreaming of the possibilities:).