Your mommy told me the other day that you have been praying for Baby Kendall. I wanted to tell you how very much that touched my heart – made me feel happy. And I wanted to tell you this – and listen close cause this is something that sometimes adults can’t hear very well –
I want you to know that. REALLY know it. Right now you are at an age where you’re probably thinking, “duh. that’s why i pray.” You have this beautiful innocent truly perfect child-like faith, and I hope that I can be like you more and more each day. I hope that I can get to that point of just letting go of all the other worry and stress and thinking and just know, God knows what’s wrong with her, He’ll tell the doctors when the time is right. In the meantime, she’ll be just fine cause God’s taking care of her.
He truly is.
So thanks for your prayers, little Katie Klippee. And to everyone. The fact that so many of you are praying for us, for our family – it continues to both humble, amaze and take me by surprise. I sometimes am able to take a step back and view my own life as it must appear to so many of you, and I realize, yeah…..we have been through one heckuva year. But in the thick of things, in the day to day mundane, its just life. And we keep on keepin’ on. And we do it with and by and because of your prayers, young and old.
Right now she is in a really good place. We are up to about 9 daily prescription meds and 2 new “homeopathic” meds all aimed at trying to calm her gut down. We met with a new GI doctor (intestinal tract) last week, and i love him. 5 GI’s in 6 months, and I finally find one who seems to GET what we are dealing with here. He pinpointed her within minutes of coming in as having pretty severe allergies, essentially to life at this point. But feels confident that with the right supportive meds and therapies we can get her to a functioning level of life. I was worried about starting solids given that she seems to react to even her completely hypoallergenic and allergen-free brown rice cereal and his advice was “well, you’re right. she’s going to react to EVERYTHING, so you either live in fear of that, or you push through her reactions, watch her real close, and see if you can find ANY foods that are safer than others.” Get busy livin’. or get busy having allergic reactions. I love it.
So she has officially started solids! So far it has taken us a week to get through one teeny tiny jar of first foods pears. But she has started on applesauce also and i gotta tell you – this kid LOVES food! She just gets pretty tired out after about a teaspoon’s worth of food and just can’t make her mouth keep working, but she’s working on it. her therapists continue to be dumbfounded by her amazing progress. Dr. Aljadeff himself finished his examination of her yesterday in his office, checked her weight curve and says in an awed voice ” She’s at 6 kilos! SIX! That is nothing short of a……(and i could tell the word miracle was on the tip of his tongue here)…..incredible thing!” And I told him it was ok – we knew she was a miracle, and we knew exactly WHO had given her that miracle. He just nodded in agreement. God bless that man.
Anyways – so we continue with the antibiotics for another few days. She’s still raspy, but the crazy scary night time breathing irregularities/distresses have lessened to almost none. She’ll still of course pull a few loooooonnnnnnnggggg pauses of not breathing, just to keep me on my toes i am sure, but overall, she seems to be kicking this stuff out of her lungs on her own pretty good! This is such a relief to me because I have had this fear that she was doing good -but what about the next sickness? So it was really good to have her be able to fight something on her own at home. Now we still have to be really cautious of her out in the heat/humidity, as this seems to do bad things to her little system. But its just part of the journey of figuring Kendall out. <shrug> so we’ll see.
Tonite I am dead tired. Ben left for Pittsburgh on Monday, and of course that’s the nite my sister decides to go into labor with her twins. So lots of driving back and forth last nite and early early this morning – but they are here at last – Leah and Elijah – two beautiful little new perfect human beings. They are gorgeous babies. She was a trooper. She ended up with a C-section which she desperately wanted to avoid, but alas, positioning was not optimal and she only labored for a few hours before they made the quick decision to just go in and take them. I am happy for her that they figured out how to give a proper epidural since apparently I was there on the day the first day med students were giving them out. And in spite of her best efforts to grow huge healthy babies, they did end up going to the NICU, just for some observation. They ended up putting them on CPAP also, but everyone was saying how well they were doing. I knew i had to go in there, to the same NICU we spent two weeks in with Kendall. And I was apprehensive about how it would feel to go back there, just from an emotional standpoint. I know guys do’nt get this, but maybe some of you other moms do. Guys think “its just a room. a room with a lot of machines where our baby hung out for a few days a long long long time ago. BFD.”
Moms think “that was where my dreams of a normal baby were lost, crushed beneath a mass of wires and tubes and pumps and medications. that is the room that held my pain and my tears and my grief when i could no longer keep them bottled up. those walls have witnessed me at my lowest points, when i thought i would leave that hospital with empty arms, and those walls have seen me rejoice at the tiniest fluttering of my baby’s eyelids in an attempt to wake up on her own. I can smell that antiseptic smell in my dreams, hear those beepings in my nightmares, my hands remember the ghost-like movements of scrubbing and scrubbing and scrubbing for two minutes with harsh soap so that i could go and touch my fragile child on the few patches of skin that aren’t covered with tape or wires or monitors. I do’nt know if i can enter that room and still breathe through my own stifling memories.” And that is what I carried into that room today.
But I remembered words from a friend who endured a similar circumstance a few weeks ago = and i reassured myself, “I am here to make NEW memories. I am going to wipe off the bad feelings and memories from the surface of the whiteboard of my brain, and create new memories. The old ones will still be there, lingering like the ghost letters of a long ago memo on a cheap whiteboard (don’t get me started on my hatred for cheap whiteboards), but the fresh memories will be good ones. Of seeing my strong beautiful niece and nephew work to breathe on their own, of having good things happen when tubes come out and wires come loose instead of a scurry of activity to get things hooked back up. It was therapeutic, it was good. and it was ultimately not about me at all – just my messed up mental headgames. I only broke down crying when I passed by the little window that Kendall used to be at. Her little patch of sunshine that I talked to her about. There was a mom there singing over her baby, pointing at the sun…
and I don’t know if i cried because of how far we’ve come from that time, or for the long long journey to get here. I guess it was because I realized that you’re never really alone in your journey, no matter what it is.
So to all the moms, standing at windows and pointing to the sun and singing over their babies, may God be with you tonite. To everyone who is at a crossroads of any kind, or wondering if God really hears you, or wondering if your problems matter to anyone – take the path less travelled, yes He does, and yes they do. In the words of Journey, as you travel on your journey,
Don’t Stop Believin’.
And a note to myself for next year when it is daughter number 2 who is losing teeth left and right –
keep a stash of one dollar bills somewhere. It’s a horrible thing when the tooth fairy has to leave IOU’s.
peace out homeslices. and grandma. you’re an extra special homeslice.
terra to the J.