Part eight: Counting blessings

Scroll down for parts 1-7.  More to follow.

So, Tuesday morning, I suggested to J’s mother that she should start looking into flights.  Lilah would not be allowed to go home until she was fully off the oxygen.  She was much perkier and ready to play, but she was so congested that her oxygenation levels kept slipping.  There was no telling when we’d be good to leave, J was in crunch mode at work, and the boys were rapidly becoming compost.

Wanda to the rescue again, picking Zach up from school and bringing him in to visit me.  I didn’t let the boys see their sister, both because her tubes might scare them and because they were the little germ carriers who had put her in this position in the first place, so I thought it best for them to keep their fresh batch of germs to themselves.

Tuesday evening, I saw another mother in the hallway.  “You’ve been here since Friday, too,” I commented.  She asked why I was there, and I told her.  “Why is your child here?”

“He’s the oldest on the floor,” she replied.  “He’s twelve.”

“What’s wrong with him?”

“They think it’s cystic fibrosis,” she whispered, clearly in the realm between exhaustion, terror, and numbness.  “At least now we have a diagnosis, but they caught it too late to do anything.  He’s autistic, too.”  She seemed to need to talk, although it was hard because she talked so quietly and I didn’t want to get to close because RSV was all her kid needed.  “They think my three-year-old has cystic fibrosis, too.”  I kept nodding and trying to sound appropriately horrified without increasing her despair.

“And they think I’m the carrier.”

All of us mothers are familiar with Mommy-guilt.  We don’t read to our kids enough.  We shout at them too much.  We forget to pick them up in a rainstorm.  They get pneumonia and are hospitalized when they are two months old.  Tuesday night, I saw in that woman’s eyes Mommy-guilt at a whole new level.  She blamed herself for killing her kids by bringing them to life.

“At least now we know what’s wrong,” she said.  “And we’re going to make sure he has a bitchin’ Christmas.”

J’s mother arrived from D.C. on Wednesday morning.  Not the easiest time for her to take off work, but we asked and she came.  J went back to work, and Lilah slowly improved.  She only needed oxygen when sleeping, a point she highlighted by ripping off the tubing that was taped across her face.  We would probably be at the hospital one more night we were told.

The child with cystic fibrosis, however, was going home. Staying at the hospital would do him no good.

22 responses to “Part eight: Counting blessings

  1. Blessings are right…they thought my oldest had it for a while. Thank goodness she did not. Puts everything in perspective, doesn’t it.

    BTW – my oldest was born at UCLA (university hospital) and I have nothing but rave reviews for the staff that the doctors that cared for her and me over 14 years ago. Your posts reminded me of the time spent there (weeks) so long ago.

  2. Yeah, I am a carrier for CF, and during my whole pregnancy with Lorenzo, my husband stalled about going for his blood test so we could rule it out.

    He’s one of those people who doesn’t want to know if there is nothing that can be done. I am one who thinks there is always something that can be done, even if it’s just state of mind.

  3. you must be so entirely exhausted.

  4. I’m so glad Liliah is improving and that J’s mom arrived to help hold down the fort.

    Also, your capacity for compassion, offering others in need a shoulder to lean on even in the midst of your own crisis, is just another exemplary thing I love about you. That other mom still has to deal with all her own stuff, sure, but for a couple of minutes, someone who “got it” was there to listen. A lovely gift, indeed.

  5. Oh, Emily. I hadn’t realized how far behind I was in your story. I haven’t been online much the last few days.

    But what an ordeal. I’ll be thinking of you, and eager for news of continued improvements.

    And my heart breaks for that other mother.

  6. I needed a good cry this morning. Your family has been on my mind a lot this last week. Keep doing what you are doing.

  7. Oy ve man. I hope that boy has a great Christmas. I just can’t even begin to understand how hard that must be.

    I hope Lilah does go home today. If she’s pulling the tubing off, she’s definitely on the mend. Poor you. I wish I lived close enough to help out. Funny, but I have this feeling where we used to live was super close to you guys. My thoughts (prayers too) are with you guys.

  8. Oh my, that is so desperately sad there are no words. I cannot even imagine that pain.

    I’m very glad Lilah is improving though! I hope you all are back to normal very soon!

    Off to count my blessings. All three of them.

  9. Continued support and prayers for y’all. I will also send up a few for the 12 year old and his family.

    I know all to well the oxygen battle. Our daughter was nearly 3 months premature. She had to be on oxygen until she too pulled/ripped the oxygen tube from her nose/face. She did that repeatedly one day until the night nurse decided to let Ms. Stubborn try with out it. She never needed a tube after that and here we are 9 years later with a happy, healthy, sassy 9 year old.

  10. I used to work on the transplant floor of a major children’s hospital, and there was this one family that I’ll never forget. Mom was passing down a gene that caused liver failure in her boys, without knowing it until it was too late. To say she was haunted was the greatest understatement of the year.

    I continue to think of you and of her and of the lady you met. And, of course, Lilah and the boys.

  11. oof. that’s just so sad.

  12. drip. drip.
    (my tears hitting the keyboard.)

    ahhh, perspective that even when things are rough for us, there are others out there struggling mightily as well. that’s the definition of compassion, huh?

  13. Ugh. Life is just so hard. So hard.

  14. Yes, having a sick child in the hospital often lends perspective. Despite our trying time living in the NICU for 2 months, we were often faced with families dealing with much greater trageties than ours. I’m so glad that you will be able to bring her home soon.

    CF is such a tough thing. I was good friends with a young woman whose sister died at a young age from the disease, and later after we lost touch, I learned she eventually lost her younger brother. She is “only” a carrier. The only child to survive. I could never imagine how she faced it. I’ll be thinking of that mother and her boys.

  15. That poor mother. Words just fail me. But I’m glad Lilah is getting there.

  16. That poor mom. They didn’t diagnose CF until he was 13 YEARS old?!? Blood tests are supposed to be done DURING pregnancies to test for it by doctors; if mom’s come up positive, then dad’s are tested because I believe that BOTH parents have to be carriers to pass it on.

    That poor mom. I hope the incompetent doctors who failed her there can at least tell her that.

  17. I keep erasing the words because they don’t SAY enough – for the mum facing the enormity of all of that, for your family going through this with Lilah. For all of the mums and the dads and the babies and siblings…

  18. oh, oof. it always seems there is someone’s heartbreak harder than yours… and it’s hard to know if that’s a blessing or a curse

  19. Ugh. So sorry you’re still there. RSV is serious but gladly curable and someday this will be behind you. Sadly, it’s one of the best reasons a kid can be in the hospital overnight. The rest – not so good. Poor other mom.

  20. Oh, the heartbreak of the CF kids – like Ewe Are Here said, I thought that it was pretty standard issue to be tested for CF, to see if you’re a carrier. I know I was tested way back when, when I was trying to get pregnant at the beginning – and then tested again 8 years later when I was actually pregnant. And when I asked why the second test, they said that there were more and more mutations that they could test for…

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