extraordinary kindness of strangers

In ALL, RAISING HOPS INTO BEERS by Stephanie Klein50 Comments

I’m home.  Lucas isn’t.  Abigail was sleeping.  I whispered anyway.  "Hi baby."  And her eyes darted open.  She stretched in her crib and flashed me a smile so wide it made me cry.  "I’ve missed you," it said, and I swooped her up and squeezed her.  We twirled around the room.  "I love you, too," I said.  And then I stopped and looked at her.  She turned her head and began to search for Lucas, staring at his crib.  Then I cried some more.  "He’ll be home soon," I said.

"You know what I’m scared of Phil?  I’m scared we’ll give all this attention to Lucas, and Abigail will eventually grow resentful."
"Trust me, that’s not going to happen."  I know we love them both, give them each an absurd amount of attention, but with all the doctor visits and appointments in his future, she might feel slighted.  I’m over thinking again, I know.  Still, I want to be mindful of it, don’t want to become that cliche of a family with a pissed off sibling, mad at her sick brother.  I don’t want him to be sick.

"You’re going to see him doing a lot of things you’ve never seen before" the neurosurgeon said.  "A lot of parents tell me they had a laid back baby who’s now suddenly a troublemaker.  Well they were supposed to be a handful the whole time.  Now Lucas is going to start to act like Lucas."  I don’t know what to expect; though, I’m excited to hear that he’ll be doing better going forward. 

He now has a shunt, and with it comes regular appointments with his neurosurgeon to ensure the shunt is working.  We’re to look for subtle signs, signals, that something might be wrong.  I don’t know what these signs are, but on my quest for more information, I studied a list of symptoms of shunt malfunction or infection that listed: irritability and sleepiness.  Are you kidding me?  That’s any baby.   Vomiting, fever, or those "sunsetting eyes" are obvious signs.  I hate that fucking term.  "Sunsetting eyes."  It reminds me of Peter O’Toole, for some reason, walking off into the sunset of his life.  Poor feeding?  Even Abigail is a poor feeder some of the time.  I don’t want to grow into a hypochondriac.

Along with all the doctor appointments, an occupational therapist and speech therapist will be coming to our home to observe and work with Lucas.  "But you’ll also want to supplement that with a private OTPT."  Occupational Therapist / Physical Therapist.  I’m learning the lingo.  I wish I weren’t.  All these visits, all these symptoms and signs to watch for, and all that worry and anticipation.  Waiting to see.  Knowing more surgeries will be in his future.  Replacements.  Possible malfunctions.  He’ll outgrow the shunt he has now; and he’ll need surgery again.  This doesn’t go away.  It could always be worse, and as I read those words, a part of me says, "I don’t want it to go away!"  I mean, we deal with it, we just do.  And of course we will.

Mainly, I just want to know that our baby is safe.  That he’ll be okay, that it won’t ever get that bad again.  That he’s out of danger.  He’s now doing so much better, giggling and kicking his sweet feet and tiny bead toes, and honestly all your words and wishes and prayers have been a tremendous comfort.  I’m not just saying that because it’s the right thing to do.  Honestly, I was held up in that hospital room reading all the emails and comments, and I felt less alone.  And believed all of it would somehow help, and it has.  I don’t know any other way to say it.  I, we, are all so thankful for the extraordinary kindness of strangers.  It has been such a comfort.  And has really made me feel so much less alone.  Not less scared, but less alone.  Thank you.

Lucas seems to be doing well.  He’s tracking, following objects, and watching us.  He cries when he cannot see us, which wasn’t the case before.  And all his stats are fine.  He had been eating 8-9oz. of food per feeding at home, and now, anything more than 4oz. causes him to throw up.  So we’re waiting to see what the doctors say about it.  If it’s just a case of too much food too soon, or if it’s nausea and something about which to be concerned.  We’re hoping he comes home today.  Abigail looks around the room and knows, 100%, that something, someone, is missing.  And I’m sure somewhere inside him, he’s missing her too.

Comments

  1. You can do this.
    You can do this.
    You can do this.

    Tracking is good. Giggling is amazing. Eye contact rocks.

    I have a good feeling that the bad things will go away. He may have this shunt, but it won't hinder him.

    Keep you head up. –NYC

  2. If God brings you to it, He will bring you through it.
    Happy moments, praise God.
    Difficult moments, seek God.
    Quiet moments, worship God.
    Painful moments, trust God.
    Every moment, thank God.

    Here's hoping that Lucas will back at home with his loving family soon.

    Stephanie, you're remarkable…

    Hugs!

  3. Thinking of you and Phil and Abigail, Stephanie, and most of all sweet Lucas. This is all going to be ok, I can feel it.

  4. Just an encouraging note…I had a brain tumor the size of a ping pong ball in my noggin six years ago. One major neurosurgery later, and I'm well; just got my annual clearance from said neurosurgeon. I'm not saying it's the same thing as Lucas, just saying that really scary things can happen with the brain, and over time they can get a lot better. You've met me….so you know. ;) I'm so happy that Lucas is going home where he belongs, and know you and Phil must have such relief. I'll continue to keep you all in my prayers and thoughts.

  5. My oldest daughter, now age 17, has had a shunt since she was 4 months old. It has been changed twice, and yes, it is scary each time. But each time, she does just fine and is much better afterwards. The signs that the shunt is needing attention are just as you wrote – unexplained vomiting, dizziness, headaches, sleepiness. I know you will be able to tell the difference between normal baby crankyness and crankyness related to the shunt. You are already so in touch with your children that you probably know their thoughts before they do.

    Shunts can last 8-10 years, but sometimes less. I think in growing children, the time might be shorter. But you will get used to it – some days I even forget my daughter has one.

    And just on a lighter note, here's a funny story about my daughter's shunt. One day when she was in elementary school, I got a call from the school nurse. Apparently my daughter and a boy in her class got into a shoving match. The boy shoved Jessica into the wall. The nurse called me, all in a panic, to say my daughter had a real "goose egg" on her head and that I might want to have a doctor take a look at it. I went to pick her up only to discover the "goose egg" was her shunt. The school nurse was pretty embarrased over that.

    I'm proud of how strong you and Phil are being during this difficult time.

    Deborah

  6. Stephanie,
    I am sending you love and good thoughts from Seattle. I am happy to read that Lucas/Luc/Beckett is doing better.

  7. Glad to hear the little fighter is doing well. Hope you and Abigail and Phil are recovering from the shock and doing better, too.

  8. Thank you for the update. And I'm so glad to hear that he's doing better!

    It might all seem a little overwhelming right now – but I bet that you will find that all the things you need to do for him will become second nature to you in no time at all.

    I'm thinking of your whole family. Please take care.

  9. So glad to know that your sweet little man is getting back to his sweet little self!!!

  10. Dear Stephanie, Phil and Abigail,
    What a scary time…so wonderful to have each other to lean on. Sweet Lucas will be fine, now that the doctors have inserted the shunt. If it malfunctions, you will know, and it's not that big a deal (relatively speaking) to fix it. Have they said whether he might outgrow the need for it? As to Beckett, with David Beckham in the country, "Becks," I'd stay away from that .
    Good luck, of course, and God bless you all.

  11. I'm so happy to hear your sweet Lucas is doing better today. I thought about you so much yesterday and even now I have tears in my eyes. My nephew was born with tricuspid atresia and had 3 open heart surgeries before he turned 4. His sister is a year older than him and is his fiercest protector. His first name for her was "Honey". When he had his last surgery she told everyone that her baby brother had a broken heart and the doctors were going to fix it. He is now almost five and is the sweetest most sensitive little boy. He will have to be on medication for the rest of his life and quite possibly another surgery but after the initial shock it becomes a part of your life and you just learn to accept it and deal. My prayers are with you Stephanie and Phil and your beautiful beans.

  12. Stephanie,
    You are definitely not alone–little Lucas and your family are being held in the hearts of many. With so many prayers and positive vibes being sent your way, he couldn't possibly be anything but well on his way to health and happiness. You are a fabulous mother. Your fierce love and protection of the beans will see you all through this bump in the road. May you find a bit of comfort in the words of strangers, and know that the pain and worry that you feel is shared by all of the mothers that read your blog.

  13. Stephanie – thanks for keeping us posted. I (like most of your readers) have been checking back throughout the morning waiting for updates for you and your little guy. Glad to hear your little bean is doing better, sounds like he is alert & getting back to himself. He sure is a resilient little fella, much like his mama.
    God bless, will continue saying a prayer for Phil, You, Lucas and Abby.

  14. hi stephanie. my niece has a shunt. it has caused her alot of problems. one boy she sees in the hospital has had hundreds of surgeries for his shunt. I dont mean to discourage you, but its something we have been living with for over three years now.
    she has learned to make fun of it, she even has replaced the words of a rap song to be about her shunt.

    i am sending this, which i see alot on sites about kids with medical complications in their lives..

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

    When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

    But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  15. I've been reading your blog for quite awhile but I have yet to comment. I'm always amazed at your honesty and the past two posts are no exception. I have no stories or words of wisdom but Lucas (and the rest of the family) will continue to be in my thoughts. Best wishes for a quick and uneventful recovery.

  16. I am so glad he is already doing better. You and Phil are amazing parents and i have a feeling that your little girl will help in the healing and rehab process more than you know.

    I will keep Lucas in my thoughts and prayers.

  17. Go baby go! I understand the kindness of strangers, as every year my radio station broadcasts from the local children's hospital and the support we feel and see from total strangers is beyond words. And the thing that gets all of us thru the toughest moments: the strength of the kids!

    They are so unbelieveably resilient. Just like Lucas. One day at a time. Congrats on his progress and many happy thoughts being sent your way.

  18. Stephanie:

    It's so good to hear that Lucas is doing ok. I'm sure it's scary and it's all so new, but you have a strong family and so much love in that house, that you'll be fine!

    You know, so many of us come here and comment here, many times mentioning how what you wrote this day or that has helped us in certain little ways. It could be inspirational, creatively, or that you touched on exactly how one of us is feeling that particular day. Oftentimes, I find myself re-reading past posts, looking up something you said. It's so nice to know that our comments and wishes to you have touched you, just the same. What a lovely little community we all are!

    Lots of warm thoughts to you, Phil, Abigail and Lucas

  19. Stephanie, sending local wishes from here in Austin for your baby boy and the rest of your family. I prayed for your beans while they were in the hospital, and will do so again for Lucas and all involved in his care..God Bless.

  20. Go baby go! I understand the kindness of strangers, as every year my radio station broadcasts from the local children's hospital and the support we feel and see from total strangers is beyond words. And the thing that gets all of us thru the toughest moments: the strength of the kids!

    They are so unbelieveably resilient. Just like Lucas. One day at a time. Congrats on his progress and many happy thoughts being sent your way.

  21. I have read your blog for a while now and rarely reply. I was going to write the other day and tell you that I thought your concept for the Time Warner Bldg was fantastic. But I didn't. I have just read the two blogs about Lucas and you, Phil and the beans are in my thoughts and prayers (though, like you, I'm not much of a pray-er). Just as you were so strong when the twins were born prematurely, I am sure that you and Phil will face this new challenge with the caring, dexterity and intelligence that will get you all through this beautifully. Thank you for sharing your life with us – in all of its amazing ups and downs.

  22. I'm so happy your little guy is doing better. Strange to worry about someone you have never met, but you and your family have been at the forefront of my thoughts the past two days. I'll continue to pray for Lucas..thank you for being so open during the best and worst of times. You are a strong woman.

  23. My older brother had a lot of medical issues throughout his life. The *ONLY* time I was jealous or upset was when he got his tonsils out, and he got to eat icecream and watch Superman cartoons and I wasn't allowed either. My parents involved me in the doctor's visits, PT visits, hospital tours, etc.

    As a child, I arrived at the hospital with home-made Mad Libs for my brother, and as an adult, I have flown across the coast, and across the country, to help take care of him after various surgeries. I was never jealous of any attention he got or attention I didn't get because of his medical issues. My parents made sure to make time for me, and things I wanted to talk about were never shut down because we had more important things to worry about.

  24. I've prayed for Lucas, yourself, Phil, and Abigail since I first read the post detailing his hospitalization. The world is full of lovely people and you're a lucky lady to have so many of them as your readers. I'll continue praying for healing, health, and happiness for your family.

  25. All I can say is thank God you took him to the ER! You are wonderful parents and Abigail will be a fabulous sister so Lucas is in good hands forever…. (-;

  26. This is a response to Jennifer Cole – I know you meant well, but I don't think Stephanie has a baby with a disability. She has a baby that needed a shunt. As we've read in many previous posts, having a shunt doesn't necessarily mean having a disability. I have several kids who needed ear tubes – they don't have disabilities.

    I've read the Holland story and shared it many times myself, but I'm not sure this is the time or the person with whom to share it.

  27. i've been checking back so frequently for the "lucas report," i was beginning to wonder if it was normal to be so caught up in some other blogger's life.

    anyway, i'm really glad to read that things are stabilizing. now that the initial shock is over, you can begin to make sense of this new situation G-d has put you in.

    i believe very strongly that your baby will be well, and it sounds like you have a whole team on board who will help actualize that (doctors, therapists, husband, etc).

    i hope lucas comes home soon! keep up the good news!

  28. I'm so glad to hear that Lucas has the shunt and you're already seeing improvement! I asked my friends over on livejournal to send out the healing mojo for him and now I can share this happy news.

  29. Glad to hear that today is a better day. I pray for you family that each day brings new triumphs and that Lucas will be just fine. Abigal, I am sure, will be just fine with what Lucas needs to go through, she'll be his rock.

  30. crap, you are making me cry at work. Glad to hear Lucas is okay and on his way to recovery.
    Hugs to you and your family!

  31. i am so happy lucas is doing better. i rewatched that beautiful video you took of him, "we all have bad days." and i was hoping that he would giggle and laugh again soon! i bet he will be that much more vibrant and beautiful now. i wish you all the luck.

  32. I kept checking back, hoping to see a post letting us know that Lucas was ok. I am so glad that he is doing better. Good thoughts and hope to you and the beans.

  33. Stephanie,
    So glad to hear about Lucas on the road to recovery. You & your family must be so relieved. You are amazing to sit down and write today about all that has been going on. You take care.

  34. Glad to hear that he is doing so much better! I hope he is home soon with his sister. Best wishes to you and your family.

  35. I've been praying for your family and checking in all morning for an update. I'm so thankful to hear that your sweet little boy is doing better!

  36. My cousin had faternal twins, they were born very early and he had to stay in the hospital for a couple weeks after being born. Their daughter was diagnosed with a rare disorder that, at the time, had a 100% fatality rate in infants. She is the youngest recorded survivor of this disease in history. My cousin said that her brother always knew something was wrong, but once his sister came home everything was ok again.

    It was so hard on their family at the time, but everyone is doing very well now. They will both do great and I'm sure Abigail will be happier once he gets home.

    Hang in there :)

  37. That's some really great news- I was anxiously checking for an update! My boyfriend was diagnosed with Hydrocephalus due to a pea size tumor 3 years ago so I know somewhat the fear, etc with neuro-surgery, check ups, etc. I'm thinking about you and your family.

  38. Happy to hear that he is doing well. I will continue all my prayers and good thoughts. All of you take care of each other.

    Sending many Hugs!!

  39. I am so happy to hear about Lucas feeling better and his doctor's being optimistic for you! You are such a good mom. Never doubt your tingling "mommy senses". I have learned not to. I am about 80% accurate and the 20% when I was wrong I do not feel guilty about at all. It's my perrogative to drag them to the pedi whenever i want!!! LOL. Love from Fort Worth to you and Phil and beans!

  40. My nephew was born with spina bifida in 2000 and was given a shunt. It has been working pretty well, but I'll keep Lucas in my thoughts.

  41. I haven't stopped thinking about you, Phil and the beans since reading your post yesterday morning. It is nice to have an update on little Lucas' health and so good to hear that he is giggling and alert! I can't wait to see new pictures of Abigail and Lucas together again!

    Wishing you all the best!

  42. Hey Stephanie.. I don't know how much this is worth since I don't have children, but your fear of becoming a hypochondriac stuck out to me.

    I've worked in early childcare for seven years; every new mother I've known without exception has expressed worry at some point, "How will I know if something's wrong? Babies can be so hard to read. How do you know?" You may or may not have been thinking the same thing when you had Lucas and Abigail. But look what's happened. You knew when something was wrong. You knew it wasn't normal vomiting, you knew it wasn't normal sleepiness or irritability.

    Even though all of this feels so new, you'll know when something's really wrong. You already have. You and Phil know that little boy better than anyone in this world, with your blessing of a nanny sounding like a close second.

    I would imagine I'd have the same fears as you. Hypochondriac, shunt malfuction, resentful sibling, etc. At least you're already aware of these fears and possibilities. I'm an overthinker, too, and sometimes I berate myself for creating more anxiety than I need; other times I remind myself that I'm just trying to be ready for any possibility so that nothing else sneaks up on me and bites me in the butt. It's a fine line, I guess.

    Hugs to all of you.. I was thinking this morning, man, I wish I could cook them all breakfast. :)

  43. You are in my prayers. No family or child deserves this. Everything will be great.

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