Y’all. It finally happened. Christmas in JulyDecember! Today was the day that we finally had our Sleep Safe Bed delivered! (after months of back and forth with insurances, social workers, providers, medical supply applications, medical supply personnel, decisions—endless phone calls (ie, waiting on hold, listening through queue after queue of not-actually-helpful robot answering services)—endless rigmarole (which I just now discovered is indeed not actually spelled as it is pronounced rig-a-ma-role??). She is finally here. She is magnificent. She is glorious. She is…a bed.
And, what—say ye—maketh this bed so—divine—so, celestial?? Ye may be asking ye-unknowledgeable-selves?? (If, supposing, ye are indeed, a pirate?) Why go through all that effort for a bed? Doth it make thee pancakes? Is it made of gold? (Both active interests for pirates).
Well, no. It is just a bed. Well, not just any ol’ bed. It is a mechanized hospital bed—oh and it has a slit in the foot board for medical tubes and doodads to fit through—and it came with an IV pole attachment. Pretty neat, huh? Oh yeah, it also sits on little rolley wheels, so that’s nice. Oh, and it cost our insurance company $30,000.00. 🤔 Now—I can see why more people are switching from meaningful careers and working in the mind-boggling squander of our healthcare/insurance systems (I’m looking at you, Jake from State Farm!). Here’s a sad fact: I could have sold 7 beds and made more than I made teaching full-time for 5 years in urban Memphis public schools with a Master’s degree….sigh).
Needless to say we have been highly anticipating this particular piece of medical equipment for some time. Izzie is now a few ounces shy of 30 pounds. Which isn’t too bad if you are a body-builder-ish guy like my friend Ben. However, I am a bit of a dad-bod-ish kind of guy, and dead-lifting 30 pounds from deep inside a crib to the floor to the bath chair back to the floor to the wheelchair to the floor to the crib to the floor to the car seat to the wheelchair back to the car seat back to the floor to the seat to the floor to the crib— over and over—back and forth—every.day.—get’s a little taxing on my 87 year old back…wait…I’m not actually 87?!
Now, instead of all that floor time, we can mechanize her bed up to a convenient height, and it will be much easier to maneuver her around for her daily/routine needs. Plus, added bonus, we can get some snuggles in her bed every now and then!
Christmas in JulyNovember
Just when you thought it couldn’t get any better… Last month, we got a home health NURSE!! (plus, you can even plug “All I Want for Christmas is a Home Health Nurse” into the tune of that holiday song about wanting two front teeth). She has been a total gift from God. She comes 4 days a week and is on Izzie duty until 4:00pm. Y’all, I cannot even express the burden that she helps us carry every week… It feels like for the first time in 3 years, we can finally catch a bit of a breath. We are no longer completely trapped in our house, utterly dependent on Izzie’s schedule, but have the freedom to go out and about in the world. It has relieved the near constant sense of feeling rushed AND feeling stuck—of starting and stopping and getting interrupted all the time, “Girls, we need to hurry and get through this part of school because Izzie is gonna wake up any minute!” or “We can’t stay here too long, we need to hurry and get home because Izzie might wake up and Mom is in a meeting” or “I know you really want to go, but we can’t leave right now, Izzie is in the middle of a feed and then will need to go down for her nap, and THEN we can go, ok?”
It’s been a tug-of-war of Hurry Up and Wait—day after day. Izzie’s schedule is not consistent because her sleep is not consistent (sometimes she will be awake in the middle of the night for hours on end, sometimes she falls back asleep in the early morning, sometimes she does not, sometimes she wakes up at 8am, sometimes we have to help her wake up at 10am.) Which means the times that she gets tired and naps are all dependent on when she wakes up. But even that is not predictable, sometimes she falls asleep within minutes at nap time, sometimes she takes 2+ hours to finally fall asleep for a nap. All of that means a required level of awareness, at all times. Is she finally asleep? Is she poopy? Did she pee through her diaper? Is she waking up? Is she due to eat again? Do we have enough food prepared? Are we out of bananas already?! (which is what we blend into her food). That constant awareness and constant uncertainty is brutally exhausting.
It also makes it near-impossible to answer a basic question like, “Can you all come over for dinner on Saturday?” Well, it depends on Izzie’s schedule that day. We live day by day (or usually, hour by hour). Saturday?! You are asking too much of us… (but also, don’t stop inviting us for dinner please… 😅).
ALL THAT TO SAY—having a nurse has made a world of difference. Now, SHE holds the awareness, at least for several hours. And we, can finally devote our minds and time, to other matters entirely. Hallelujah. (I even unboxed a birthday present of mine from March (finally) and custom made a pump/food bag holder that I have been wanting to make for a very long time… Relish her beauty below)
ChristmasBirthday in November
We’ve enjoyed our first Fall back in the Bluegrass. The colors, the crispness. We’ve even had a few inches of snowfall already! A few weeks ago, our sweet little IzBiz turned 3. You don’t have to look much further than that to find a better example of the grace and goodness of God—of his steadfast mercy and compassion and love. “Because of the Lord’s great love we are not consumed, for his compassions (mercies) never fail (end). They are new every morning; great is your faithfulness.” (Lamentations 3:22-23) Three years ago, I had never even heard of trisomy 18. That one tiny little extra 18th chromosome has profoundly changed the entire course of my entire life (for example, I used to be an international man of magnetism and mystery (ok, not really)—but now the main thing that I look forward to in a day is completing my daily Wordle…). And this tiny little 30 pound squishy girl is a daily reminder—a compelling portrait—of the love and power of God—which has profoundly changed my faith and understanding of certain spiritual (as well as physical) things.
In recent months, Izzie has stayed in really good health (her last real sickness was back in March). As a result, we have seen her progressing in a number of tangible and incredible ways. She is acutely more aware of her surroundings. If she drops a toy, she knows it is beside her and will reach to pick it up. She easily can pass a toy from one hand to another or bring toys up to her face and mouth. She has become more…(I was going to put “verbal”, but I think a better word is just…)…noisy. Lately, almost every time Katie bends down to look at Izzie, she will let out a fierce and piercing screech. Maybe it’s her way of saying hello? Or it’s her warrior yell? She is more easily persuaded into hearty laughter than she used to be. (Eliana can always elicit the best reactions from Izzie.) My favorite thing is when we start to make her laugh, eventually she get’s sort of laughing, which makes us start genuinely laughing, which leads to hysterical laughter from her which sets us off altogether again. It is simply the best. Izzie is also a lot stronger, she can hold a standing position (and seems to like it) with minimal support, for quite some time. (We are also in the middle of the process of getting her a gait trainer device that will be able to assist her with taking steps/walking—but as you witnessed with the bed, that could still take months…who knows). She also really likes poking her eyes now. (To each their own, I suppose). She has been teething for years, but they’re still coming in. I call her bottom ones her monster teeth because they look like perfectly drawn little white chompers. She also has grown out some wild long hair (a bit like her daddy I suppose). It’s pretty thin on the top of her head and back of her head and long at her scalp—a perfect mullet-y thing that helps her fit in with the local Kentucky folk. Her appointments keep us on a pretty packed schedule. We just added 10 therapies a month (through the Pre-K system), plus all her regular check ups and screenings. But overall, we truly cannot complain.
Sometimes little things are big things.
You know, here’s the crazy part—Izzie being born with a rare chromosomal disorder has truly, without a doubt, been the hardest thing that we have ever had to go through. The suffering has been real—there have been many low lows, many sleepless nights, many tears shed, many dreams lost as we fight through wave after wave of tearing grief. The burden of caregiving, at times, has felt like one too big to carry. YET—I know for a fact we would not have it any other way. We wouldn’t change it at all. Isn’t that crazy?! Now, I did not arrive at this conviction overnight (I am way too slow of a learner for that…). But it is the truth. God does not make mistakes. Izzie was created with trisomy 18 and given to our family. And, because of the Lord’s great love, we are not consumed. So, why was Izzie born with trisomy 18? I think John 9 gives a good answer. “That the power (works) of God might be displayed (made visible)(revealed)” in her. It is all for his glory. Amen and amen. We are very much still figuring things out and certainly far from perfect, but we are at least aware that the thing God is leading us to do is the primary, for his glory.
I don’t know where or when I came across this F.B. Meyer quote, but I think he really captures the heart of this idea (or journey) that I have been processing for over 3 years now.
“We have all cherished our life purposes. We have forecast our futures as likely to lie in a certain direction and have dearly desired that it should be so. When hindrances have been put in our way and when we have met with strong opposition and rebuff, we have still clung to our hope. Only very slowly have we yielded and accepted the inevitable. To renounce it has been like tearing out our heart. Not till long years have passed have we realized that the Lord’s plan was much wiser and grander that our own. Then suddenly we have awakened to discover that while we were desiring to do one thing, God was leading us to do another and that what we have counted secondary was primary, for His glory, and for the lasting satisfaction of our own heart.”
‘Nough said.
If you made it this far, maybe you’re in for a treat (or not, depending on who you are!). I’ll close with this last thing. A few months ago, Katie hint-dropped my new secret hobby. I have invested in some recording equipment this summer and have enjoyed having a creative outlet to learn more about and explore. I will attach a simple song that I wrote and recorded a few months ago, I hope you enjoy and are encouraged. It comes from Lamentations 3 (duh it does).
I’m feelin’ crushed, I’m barely breathin’,
Under the weight of loss, of fear, and grievin’.
My soul is burdened and my body shaking,
And the tearing sound of a heart breaking.Can you hear my song, I’m barely singing,
To your truth I’m barely clinging.
Anchor my thoughts, I will not be shaken,
Cause your promise says I am not forsaken.But because of the Lord’s great love
But because of the Lord’s great love,
We’re not consumed and his mercies never end
Because of your love, and your faithfulness.
DAVID SCOT MUSSER 