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:).

LOVE.LOVE.LOVE.

I always have something running through my mind like a ticker....a to-do list, a mantra of some sort, something Garrett said, a word that strikes me, etc.  This is probably  a serious sign of neurosis....don't tell me!  Today it's:   a love that will not let me go  ...."themey", I know.  Here are a few verses from the song I love. Hope you had a great Valentines Day!

O love that wilt not let me go, I rest my weary soul in Thee;

I give Thee back the life I owe, that in thine ocean depths its flow may richer, fuller be.

O joy that seekest me through pain, I cannot close my heart to Thee;

I climb the rainbow through the rain, and feel the promise is not vain that morn shall tearless be.

George Matheson, 1882

I haven't blogged in awhile because, a) I figure I should put "shower" first on the list and b) I have grasshopper brain (i.e. no concise thoughts, jumping from one line of thought to the next).  But, because this keeps you thinking of us and I am shameless in asking for your prayers...here is the latest:

Lilah is doing great. Really great. She's happy, making more of her noises, reaching for toys, laughing (silently), and gaining weight!  We've had several minor "issues" with her since returning from the hospital, most of which are resolved.  Her feeding tube has been infected, leaks a bit, and definitely requires some patience and practice.  The biggest concern for me right now is her sleep.....she's had to sleep on her back since her surgery and she wakes up anywhere from 5-10+ times a night for her paci.  I have worked like McGuiver the last few days, cutting into massive pieces of foam with a butcher knife, and have finally gotten a somewhat usable system to accommodate her tube so that she can sleep on her stomach without waking up 6 million times and night and driving me to the insane asylum....(sleep deprivation makes me unable to puncuate:).

The state of the union around here is crazy.  Paul has taken a new job (I maybe will just let him explain it sometime) and is very busy with training for the next several weeks.  Our insurance denied a nurse (boo!), but we've found a very competent nursing student to help on a somewhat regular basis.  Still running to at least 1 or 2 doctors a week and getting Lilah's therapy started soon.  And, all the other little things that go along with a house and kids, but seem totally overwhelming to me because all my spare hours are spent.  I think I say this every time, but I am feeling totally overwhelmed most days.  It seems like the immediate crises are leveling off, so I'm trying to adjust our family to this new normal.  Caring for Lilah and all that involves could really keep someone busy around the clock.  I am quickly figuring out for the sake of the "common good" and my own sanity, not everything can get done perfectly (or at all for that matter).  Trying to find the balance....and wishing there were more hours in the day and 2 of me:).

this is Garrett "going to the hospital". he takes his "monk", my purse, my coat and says "monk sick, we going hopital".  he walks around the house, and returns saying "monk all better". this is not my favorite pretend play scenario:(