Whew! *puff puff* That's me, blowing the dust off.
It's been awhile! And it was a while between the last couple, too - that's what happens as a completely physically dependent child gets older. Around here, anyway; during the day, I'm the sole entertainment and care provider, so by the time night rolls around, all my creativity has been sucked into a sorta large six-year-old, and there's nothing left for my poor, neglected blog.
That's right, I said SIX! Our little miss Lucy is hardly little anymore, and has officially moved into two-hand age tallying. She will be starting kindergarten in the fall (she loved pre-K so much we had her complete two years' worth) is still full of sass, and can somehow show it even more! She loves her dolls, is still favoring classic Disney movies over the fancy new animation, and continues to adore my cat-in-heat singing (we'll see how much longer that lasts!) Daddy maintains his position as the apple of her eye, naturally. Lucy is now fully bipap dependent, and while we are looking into traching, she's happy with her respiratory support.
When Lucy was diagnosed, and I'm sure I've said this before, I didn't cry. I stood there, stone-faced, while a geneticist told me that my baby was going to die before she turned two years old, and I bounced Lucy in my arms, and I didn't cry. I suppose I was in denial. Oh, I bawled when she was hospitalized for testing - sat up nights rocking her as she slept, sobbing, praying, begging for it not to be anything serious, promising the world if it wasn't. But it was.
And I guess I just refused to accept that. Refused to believe that any person on earth could tell me what would be with Lucy. Because, news flash - no one can. No one can tell you, with absolute certainty, what will happen to your baby - happen with their life - whether they're medically fragile or not. They can guess what may be, they can predict what will probably be, but they can't tell you what will be. God can do that, but He's imparted this beautiful gift called hope, so He's probably not going to share that information with you.
Lucy is proof that no one can tell us what will be. And I have never once regretted being in denial. I'm proud of it. I deny that anyone can tell me how my child's life will play out. Apparently, so does Lucy.
Thursday, July 9, 2015
Whew! *puff puff* That's me, blowing the dust off.
Posted by Lucy's Mama at 9:01 PM
Sunday, March 22, 2015
Did you watch Sesame Street before Elmo took over? Then you might remember the Amazing Mumford the magician and his peanut butter sandwiches, and may have understood my punny blog post title. If not, now you do.
Imagine my surprise (or lack thereof, I suppose, if I'm honest) when I heard a woman snapping at a child to be quiet this morning at the flea market, and I looked up and saw the same pair. The toddler who had been through the thrift store the morning before, was now being walked through rows of dusty wooden Pepsi crates and yellowing doilies at the flea market. And if she dared to make a sound or balk in any way, she was scolded.
All this to say - just try some magic. I know you're tired, and you want to possibly uproot your hair, and you just need to get these errands done, or you just want a moment to yourself. But before you resort to snapping out threats or growling a punishment at your child... take a breath, stoop down, give them some REAL attention, and make it a game. Find something pretty to marvel over. Make airplane or monster truck noises with the cart. Shake the red peppers you're washing like maracas. Be your own little Mary Poppins. I guarantee you, you will both come away from the experience feeling worlds better than if you had skipped over that time you could make your own magic, and acted on your frustration instead.
Posted by Lucy's Mama at 10:22 AM
Monday, January 26, 2015
Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Jesus Christ for you. - 1 Thessalonians 5:16-18
Posted by Lucy's Mama at 10:13 AM
Monday, January 5, 2015
Posted by Lucy's Mama at 10:11 AM
Tuesday, December 30, 2014
Sorry for the long interlude, faithful readers! Looks like my last post was at the end of August, so that was right before Lucy got sick. Wah wah... Yep. Lucy got sick right at the beginning of September, and it was a doozy. She couldn't kick it for a full month, and then she had what I think was some allergy problems right on the end of it that extended it into mid-October, and then she had a vomit, and an additional choking episode. A pretty scary episode, that dropped her oxygen level into the 60s (100 is what you're shooting for) and kept her heart rate low for awhile afterward, which is unusual for Lucy.
All that means that we are doubly, triply, quadruply and beyond blessed that she's in her new room now. Lucy hasn't wanted to spend much time off of her bipap, and has been reluctant to leave her room. She's dealing with a lot of anxiety, due to this episode she had, and understandably so. She prefers the comfort of her safe zone, and we are more than happy to allow her that comfort. We're working her back up to what we hope will be her old baseline as far as time off of her bipap, and working on getting her out and around the first floor, but it's slow going. Lucy is older, and weaker, and we are still figuring out when to push and when to back off and recognize that she needs extra help. The anxiety also seems to be affecting her sleep; she appears to be afraid to go to sleep, thinking that we will leave her alone, and has been crying when she starts to feel herself falling asleep. There has been constant wakefulness through the night, every night, with lots of crying - she's even panicked when I've had to go to the bathroom... 10 feet away. I had to yell to her over and over that I could hear her and was coming back. We are working on reassuring her and easing her anxiety... but it's hard. We can't guarantee her nothing will happen. It has, and it can. She seems to be calming down a bit these past few days, so we're hoping she's relaxing again.
This would be a completely different feeling, a completely different situation, if we were still in her old room. We were tight on space, both in her room and her bath, and that would have only added to the stress of the situation. As it is, Lucy can now do school time (she had her teachers and therapists still visiting her at home until the end of November) and play time comfortably in her room, if she chooses not to leave. The amount we have to carry her is drastically reduced, since we aren't navigating a flight of stairs, and so it's safer and more comfortable for her to head to the kitchen, living room, or dining room to work on projects or help me bake :) We can roll her right to where she needs to go on her hi-low base, and the only transfer that needs to happen is from her bed to the base. Bathing is a snap now too, with the higher, larger tub - two people can easily access her, and she can stretch her legs and arms comfortably. It's truly a dream come true, for all of us!
I had taken copious amounts of pictures throughout the entire process, and was going to put together a type of flip-book slideshow, but... well, the best laid plans and all... anyway, that plan is scrapped. You'll get to see them in the entirely un-fancy blog post style.
And here they are!
Posted by Lucy's Mama at 5:50 PM