Good Intentions

When I started this blog… I had such good intentions. Life was busy… but still manageable. My hope was to write once a week… at least. Well… I’m not sure that ever happened… and life never slowed down. In fact… it sped up… a lot. Busyness turned to chaos… and chaos is not manageable. Most days I feel like I’m just surviving. I’m lucky if I get a shower… let alone blog. (Note to self… find out if someone makes a waterproof laptop.)

So… here I am… with a free moment… and while I should be folding laundry… putting away dishes… planning supper… I’m blogging. I just need a break. I also feel like I should explain my absence… and update you on the life of the Mighty Willow.

Willow has been a sick little girl the past few weeks. First it was the 24 stomach bug. Uffda. Now… it’s a nasty upper respiratory bug. I wish it were a 24 hour thing… but we’re currently on day 6… with no signs of improvement. The good news is… throughout it all… Willow’s never had a fever! That’s significant… considering she supposedly has neutropenia. I say “supposedly” because we’re still not sure if her blood tests are telling the whole picture. Somehow… Willow is fighting these illnesses… despite her blood work showing she doesn’t have the necessary white blood cells to do so. I don’t get it… her hematologist/oncologist doesn’t get it… so we’re just going with it. But… we’re not exactly throwing caution to the wind. Willow will be receiving a round of Neupogen (neutrophil boosting shots) to prepare for her upcoming 15 month vaccinations. Shots to prepare for shots. Crazy. Hopefully the Neupogen will boost her white blood cell count enough to fight off any left over nastiness that’s in her body before she gets her vaccinations. God… I hope so.

While sickness has dominated our time lately… Willow has provided many things to smile about. She has started feeding herself with a spoon! It’s pretty messy… I’d call it a full body experience… but she’s figured it out for the most part! She’s also been talking up a storm. She is great with her “b” words. She will say “bah” for bath… and get all excited… when I strip her down after supper. It is so stinkin’ cute. She also loves watching her big brother get off the school bus in the afternoon… and often smiles and screams “bahbah” for brother. Willow also tries very hard to say “puppy.” She gets the “puh” out… which is huge. Willow is also getting stronger… so much so… that she was able to hold herself up in a crawling stance for about 3 minutes the other day. She still unable to get into that position on her own… but if you put her there… she can hold it. That is amazing progress.

If I’m not battling sickness… I’m battling the people who are paid to help us avoid sickness. Let me tell ya… there are some great doctors in this world… but there are also some real jerks. I’m learning the power of recommendations. I’m also learning how amazing it is to have great health insurance that allows you to try out different doctors and therapists. It is truly a gift from God. I can’t imagine having to stick with someone who views my daughter as just another kid w/ Down syndrome. They’re not all the same. They don’t deserve cookie cutter treatment.  Willow is a person… that happens to have an extra chromosome. She is unique. She is amazing. She is worthy of time and attention. Ok… I’m stepping off my soapbox. Although… I haven’t been able to take a shower yet today… maybe a soapbox could do me some good.

Back to the whole blogging thing… I really do have high hopes for 2015. I would love to be able to blog more. Writing is therapy to me. It allows me to process what’s going on in this crazy world. It’s selfish really. The idea that somebody else might read this… and get something out of it… is crazy and humbling. Even with all the sickness and health care headaches… God is clearly visible and I love being able to share his story through the life of Willow. I give Him all the glory. Because without Him… the sickness would be a death sentence… the jerky doctors would be the end of me… and all the hard work would be pointless. There is joy amid the pain. All this hard stuff is temporary. Hope is eternal.

Willow using a spoon
Willow using a spoon
Celebrating herself
Celebrating herself
IMG_6261
My first attempt at getting a “nice” picture of the kids
IMG_6262
Take 2
Take 3... I give up.
Take 3… I give up.

 

 

 

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