Wednesday, April 21, 2010
Wednesday, April 14, 2010
today is libby claire's favorite nurse matts birthday. i have written about what an awesome person matt is & how he will have a place in our hearts forever. matt never got to see libby claire awake because he not only works the night shift but she was also in a coma while he was at all children's. matt is a traveling PICU nurse & left to be in another hospital before libs was removed from the coma meds. how i wish we would have met him & his sweet amanda (also a PICU nurse) in some other way. he calmed matt & me. as soon as 6:40 would roll around we knew at night that libby claire would be in good hands & he would take wonderful care of her. we are so grateful to all the staff at both hospitals for their delicate care of our baby girl but mostly to nurse matt...even in libby claire's coma she loved him...we could just tell. happy birthday nurse matt. i was reading in the books of acts the other day & thought of matt. jesus healed, calmed fears, guided, taught & loved throughout his ministry. matt mirrored Christ for us at that time in our lives. through matt we felt jesus. thank you matt!
i remember when the swelling got extremely bad. it moved from her head throughout her whole body. libby claire was unrecognizable. it was not only how fluid filled & swollen she was that broke our hearts but the small changes that only mama & daddy would notice. there are these two teeny tiny freckles on pips left knee. they had completely moved to the other side of her leg & up some during the time of all the swelling. she had changed, in the biggest & smallest of ways. we knew where those freckles belonged & needed to be. when we pointed it out to one of the doctors she said "wow, how could you notice something so small.?" my answer was " i am her mother...i know every square inch."
i was up last night around 4 am thinking & couldn't get back to sleep after feeding finn. my mind began to remember her little body...those little freckles. then i began to think of our Father & the many scriptures written about His love & how He knows us so well. before we were even born God knew of us. He knows the number of hairs on our head...the tiny freckles on our knee. what hope i take from that. how those scripture verses heal my heart & comfort me. just like i know every little part of libby claire as her mother He knows so much more. to think i love our baby girl so much & know her so well & He does EVEN more than i. that baffles me. it is amazing being a parent. the love of christ is a little bit easier to understand & relate to but still seems to overwhelm me.
i am thankful to our savior for knowing where our little teeny tiny freckles are & should be, even when they are moved out of place a bit. thank you jesus for your holiness, acts of mercy & healing, teachings, love & grace. i am grateful for your people who displayed you to us.we did not take any pictures of libby claire when she was at her worst. this was taken much later. matt & i rememer the reason we took this picture was because she looked so great to us. most of the swelling had gone down & she was ours again. now looking back my heart hurts to think that this looked great! whew...what a miracle...look where she is now! :)
Wednesday, April 7, 2010
in the middle of spring break...
all is right with the world.
the boys have found a huge mud puddle somewhere off deep in the woods. they take off on their bikes & come home hours later covered with mud from head to toe. how great is that! not for me. i find myself on the verge of a major anxiety attack. bad thoughts, images, fear all creep in to what should be moments of mothering bliss, knowing our boys are off doing "boy stuff." the same happens when maggie is at a friends house, libby claire is upstairs being a little too quiet, or finn (who now rolls over already!) is sleeping soundly in his crib. i worry & begin to panic about all the "what ifs." i work myself up & almost get sick. what in the world? i struggle to clear my mind & get busy to keep me from thinking. most nights i am up checking on the kids or just making sure they are breathing. i remember doing this a little before last july but now it overwhelms me. i almost never let our kids play at a friends house, i constantly am behind them warding off any threat of an injury. i feel as though it is getting worse as time goes on. my poor children. i wish it would stop, my mind reels & i end up in a sweat...just thinking, over and over.
monday was our meeting with "ashie" libby claire's therapist & her new speech pathologist miss barb. after a lot of paperwork & chatting we are on a plan. thankfully mima was there that afternoon & pushed me to make the changes that needed to be made. all sippy cups are now in the trash, a pabbie is tied to the door knob & we have 2 put away to be used at bedtime & nap. all leftover pabbies are thrown away. we are ready to begin to strengthen libs tongue and pallet & so she can form more words. why a pabbie tied to a door knob? well, during the day instead of running around playing with a pabbie she will have to go to the door & suck on it. the string is not long enough for her to sit...she will stand. after a minute she realizes what she is missing & leaves the pabbie behind. hopefully, she will wean herself from the pabbie during the day & only have one at night & nap.
we have a hunormous book of signing AMERICAN SIGN. it seems like a lot. we have worked on her name, and a few other signs. she doesn't seem to interested...at all! we are planning on her adding words to her vocab each day. i have begun to cut out & take pictures of her favorite things. i cut the picture of her fruit snacks out, granola bars, bananas, books, some of the things she loves. miss barb is going to make a communication board for libs. she will have to go to the board get the picture of what she wants & bring it to us. therefor, communicating a need...not just signing more & grunting. she is very strong-willed & stubborn, so we will see how this goes.
her speech will be 1 hour a week. ashie & miss barb are so wonderful. both love libby claire & are committed to getting her where she needs to be. what a blessing!
all counselors & chaplains we worked with in the hospitals said i needed to write since i couldn't talk about ALL that goes on. so i find myself here, open...just writing. libby claire got a boo-boo on her head on sunday. we found ourselves in tears in the car on the way to easter lunch. each bump or scratch completely freaks us out. i wish we could move on. all our children can not live under our wings forever. i want to protect them just as i did before but not be so overwhelmed. i can't let go. i am just wanting the fear to go away.
our boys are being boys, maggie needs to go & play, libby claire will fall & get hurt, finn might sleep through the night if i could just leave him alone...all is right with the world, can't i accept that and move on? i am ready to, i want to!
praying these verses will wash over me-cleanse me-free me:
matthew 6: 25-34
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