Happy Sweet 16 (days that is), and 16 random thoughts to celebrate

Baby Jed is 16 days old. After all the lead up, all the doctors appointments, all the trepidation, I can’t say I wasn’t relieved to finally see his little face in person. And here we are on day sixteen for my little man who was never supposed to make it this far. 

mothering a chronically ill child

  1. The day that Jed was born went as wrong as wrong could get. We had a plan. All the “ologists” had talked. We had a date. I knew where I was supposed to be, and who was supposed to be there, and what what supposed to happen. Except that crazy kid did his own thing and came at the wrong time in the wrong hospital in the wrong way without the right people having time to know he was coming. And oddly? It all worked out just about perfect. Which is exactly how you know God was looking in and probably saying something along the lines of,  “Hey y’all nice try, but let me handle this a minute.” (God speaks southern in case you didn’t know.)
  2. Jed is 16 days old. Did I mention that already??  I’m not saying he’s healed or anything, but for a kid who wasn’t supposed to live past birth, 16 days is not too shabby!
  3. Just for the record, I had a baby, not a tragedy. Maybe it’s just because I’m his mother, but I’m pretty happy about him. I’m happy I got to meet him alive. I’m happy he has the same reddish blond hair as his big sisters. And I think his feet are the cutest.
  4. Sitting and staring at monitors is a little surreal, it’s hard to believe we’re at this again. I think people who spend three fourths of their lives in hospitals and doctor’s offices should get honorary nursing degrees. At least. But an MD would be even better.
  5. I am genuinely thankful we had the Mini girl first. I can’t imagine my first experience with a seriously ill child starting with one this complicated! She’s like a smart phone compared to this kid who’s on the level of a futuristic robot. At least we can skip learning all the basic “ho hum what do those numbers mean anyway” stuff and head right into learning how to speak nephrologist talk. (Anticoagulant…now that’s a fun word to say.)
  6. I keep calling “him” a “her”, and it’s probably going to take me a least a year to get used to the fact that I have a male child. Poor boy.
  7. Having “met” all these feelings before of leaving my child in the hands of strangers and returning to normal life without him makes all this somewhat easier. I know what to expect. I know that some days will be fine and some will be horrible. I know that I can discuss surgeries, machine settings, and dialysate concentrations all day with absolutely no issues, but fall apart over the tiny cowboy boots in the shoe aisle at Target. At least I know what to expect.
  8. Speaking of knowing what to expect…I’m going to write a book someday to add to the What to Expect When Your Expecting book series…it’s going to be called What to Expect When Your Expecting: Expect Nothing but the Unexpected. I’m certain it will be a best seller.
  9. Being in public is hard. Seeing normal families with healthy kids is hard. People assuming I only have two kids because they are the only ones I ever have with me is hard. Knowing it will be years before my entire family can go do something as simple as go out to eat or go to church all together is hard. Don’t get me wrong, I’m deeply grateful for the family I’ve been given…
  10. But, despite the common misconception, being grateful doesn’t somehow nullify reality. Hard is still hard. Realizing I have much to be grateful does this: it creates an anchor for the ship of my thoughts and emotions. As long as the anchor is there, the ship doesn’t get washed away in the relentless hurricane of reality. It grounds things. It does not make the storm go away.
  11. I realized the other day that practically all of the friends we’ve made since moving here two years ago came into our lives because of my two sick kiddos. Blessings come in all sorts of packages.
  12. I’ve noticed that one of the best cures for worry is when too many worries pile up that are too heavy to even begin to carry, and you really don’t even know which one to start with, so you just don’t bother with any of them…and you basically just have to leave it all up to God. (Sort of like how my “to do” list works!…except telling God He’s going to have to handle it never got me a couple of angels to mop my floors. Which would be really, really nice.) Anyway, point being, praying for more faith is just about like praying for patience. Be careful what you ask for, you just might get it.
  13. People tell us all the time, “I just don’t know how you do it.” I never know what to say to that. Except this. You’ll know when your turn comes (and it will). There’s nothing to “do”. You don’t get to sign up for hard times when you feel like you’re ready for them. You don’t get elevated to “special super person” status before you’re handed a trial. This works just about like old school swimming lessons. God chucks you in and that’s that. Pretty soon you learn to quit squalling and hold your breath already. Somewhere along the way you’ll figure out that those handy dandy arms and legs God provided you with are just perfect for swimming. And once you’ve calmed down a bit you’ll happen to notice that God’s been floating along right beside you the whole time, and you never were going to drown in the first place. And that’s how you “do” it.
  14. Note to self: Don’t forget to pack your sense of humor. You’ve got to see the lighter side, you’re cheating yourself out on life if you don’t. Like when several super smart doctors whip out their iphones to Google something about your son…you just as well chuckle about it. (Never mind that it’s also slightly disturbing. You’re Googling him?? Seriously?)
  15. I wonder every day what permanent impression this will make on my two healthy girls. We scrape to create “normal” for them, we do our best to shield them from grown up worries, but they know. They know babies aren’t supposed to be attached to tubes. They know little sister has to work hard at things that they don’t. They know it makes mama sad to leave baby brother at the hospital. I wonder if they will resent it all. I hope not. I hope the things they have seen teaches their hearts to know compassion. I hope they learn to care for people. I hope they are the ones that befriend the cross eyed kid on the playground. I hope they learn that people who love each other stick together and help each other. No matter what.
  16. Among the three thousand things I’ve learned about the human body in the last sixteen days, I’ve learned that kidney damage is not something we are ever going to beat. Dialysis buys a person time until they can get a transplant. The body can reject a transplant at any time. A transplanted kidney has an expiration date, and then a new one will be needed. It’s a cycle that continues. It’s hard to accept that my boy will always be living on borrowed time. But then again. Aren’t we all? These precious sixteen days remind me again to make good use of time. It’s always a gift. It’s always limited. Invest it wisely.

“Two little lines I heard one day,
Traveling along life’s busy way;
Bringing conviction to my heart,
And from my mind would not depart;
Only one life, ’twill soon be past,
Only what’s done for Christ will last.”

- C.T Studd

Psalms 139:3   Thou compassest my path and my lying down, and art acquainted with all my ways.

 

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About Abby

I'm a mom, blogger, and shop owner. I love all things creative, especially sewing! Follow along at www.chapterthirtyseven.com
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3 Responses to Happy Sweet 16 (days that is), and 16 random thoughts to celebrate

  1. Paula O'Donnell says:

    My Dearest Abby,
    I have been praying for you and you’re littles so hard. I am always grateful and blessed to read your posts. Yes your oldest daughters will learn empathy before their peers. I am so glad Jed is here and that nothing absolutely nothing is outside the power of GOD except that which is outside his perfect will. I will pray that the next 16 days bring you joy and bring Jed strength for another day. As a teacher who has had the privilege to teach kids who had made it to age 16+ that doctors said would die before or shortly after birth. (God must have quite a laugh when he hears that). And while they were still afflicted with physical and mental delays, they continue to be sunbeams sent by our father to light our world. Also, I may be bias because I was supposed to be born deformed and delayed and God really laughed because while I still have some issues (and am missing a chromosome) God is merciful and wonderful. He has blessed me with a family and 2 little ones who while we’re not easy to be pregnant with I can not complain. I hope this helps a little and brings you hope and peace beyond understanding about what our Mighty and Sovereign God can do.
    The Lord bless you and keep you.

  2. Shannon Keith says:

    Oh Abby CONGRATULATIONS!!!!! Praising God and tears of joy a flowin’!! :D Love Shannon :)

  3. Pingback: Perspective is Everything - Chapter37

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