i’m a mess

In ALL, ILLNESS, SNIPS & SNAILS by Stephanie Klein50 Comments

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"Be strong."  I hate that shit.  I've actually always hated that shit.  I hate it when I hear it in a movie, or on TV, or on some "love songs at night" radio program.  And I know why people say it, I guess.  But not really.  Do I smile for Lucas and Abigail, so they don't worry?  Yeah.  But that doesn't make me strong.  It makes me an actress.

Lucas was released from the hospital, as expected… but now he's back.  This sucks.  He spent the night at home with us, a happy little clam.  But when we held him, he jerked a little, as if he were startled, and when we fed him, he was still throwing up.  Well, that's not good.  But we let it go until the morning.  And in the morning, nothing was worse, but not much was better.  He wasn't smiling or giggly anymore.  Come on baby, I know you've got one in there.  But he didn't.  So we called the neurosurgeon, and better safe than sorry, we brought him back to the ER.  Ugh.  Another cat scan, and then x-rays of the actual shunt to make sure it was working properly.

That was the hardest part.  I climbed onto the rolling gurney and held Lucas as we whipped down the corridors.  "It'll be okay, sweet bean.  I won't let anything bad happen to you."  And then I had to hold him completely still, me in my lead apron, forcing his head still for an x-ray, or FOUR!  I tried singing.  "Here, Mom, hold his arms tight, and don't let him move."  And I did as I was told, even when he screamed as if I were pulling something out from inside his body.  "Okay, Mom, now take these felt paddles and hold them on each side of his head.  Don't let him move."  It's torture.  Absolute torture.

His cat scan came back absolutely fine.  The ventricles did not get any larger.  The shunt is working fine.  He'll leave the hospital again tomorrow, we imagine.  And then he'll be home again, and we'll watch him, every little movement, and we'll listen for every sound, as we did this morning, when he was on his activity mat, and I heard him kind of choking because he'd spit up but didn't want to turn his head.  So I rushed to him, scooping him up, wiping his mouth.  His face was red.  What if I weren't there?   Would he have turned and worked it out himself?  I hope some of this happens in the hospital so they can tell us if it's normal (which I suspect it really is). 

I don't want him getting used to this, to a life of x-rays and hospital visits.  It made my heart hurt.  And my face twisted into a cry, knowing it didn't do any good.  "This totally sucks little man.  I know it.  And if I could, I'd get you a cheeseburger."  And it still wouldn't make up for it.  It totally sucks.  And the poor guy has been tortured all day.  Two failed attempts to insert an IV, not to mention six or so tries at just finding a vein after using the tourniquets.  And he cries like you're squelching his soul.  And I just want to make it stop.  And I can't.  And I hold him and sing, and brush his face with the back of my hand, and none of it helps.  And I pick him up and hold him close, and it doesn't work.  He doesn't like me.  He likes Phil better, I think.  I can't do this.  I feel like such a failure. 

And I don't want Abigail in the hospital.  I don't want her catching germs and getting sick, and since we don't have family here to babysit her while we're at the hospital with Lucas, we have to split up.  And yes, our families have offered to come, but honestly, that's just more stress.  And friends have offered to watch her, too.  But we don't want to change up her schedule too much.  I know tomorrow Lucas will be home again, and that if he gets antsy again, we'll first try to soothe him with a ride around the neighborhood.  You know, to Baskin' Robbins.  And then maybe baby and mama will be a bit happier.  I just feel so sad, like it's my fault.  Intellectually, I don't think these things, but emotionally, I'm a mess.  And I feel like I'm to blame, that I didn't build him strong enough.  And when I can't fix the pain away, I feel like I've failed him.  Yes, I'm a great mom when it comes to songs and sign language and clipping fingernails, and I'll hold his hand until he falls asleep.  But I worry I'm not good enough with this part, with comforting him.  With making us both feel like less of a mess.      

Comments

  1. I'm so sorry. There's nothing worse than feeling helpless with one of your babies. Lucas will be better than fine I'm sure, but it's hard to live through. I wish you the best.

    FROM STEPHANIE: YES! That's exactly how I feel, just totally helpless. So I came home and played with Abigail, and then I cleaned. Because it was all I could do. I wiped the house down in Windex, and organized all of Phil's papers (he's a mess too). And I just hate feeling like there's nothing I can do, other than "be strong." Because that doesn't do anything for anyone. And I'm also not trying to knock all the people who've sent loving messages, who also included we "be strong." Of course I understand your sentiment… and appreciate it. It's just a hard time… and like I said, I'm a mess.

  2. How difficult that must be, to see your baby upset and in pain.

    If he's a difficult stick, which it sounds like he is, I would inquire if someone from the life flight team could insert his i.v. (or the BEST phlebotomist they have). Also, if it is too upsetting for you, just remember that you don't have to be right in the room when they insert the i.v. or perform other tests. I know you want to be, but I don't know if it really makes that much difference for him (at least at this age).

    You can do this if for no other reason that you have to, for Lucas' sake. The way you are feeling is totally understandable, but I think it will get easier for you. In the meantime, I would rely on friends and your nanny as much as you can.

    Again, I'm really sorry you guys are going through this and I wish Lucas good health.

  3. I'm sure it sucks right now. But he won't remember any of this. It will be like it neve happened. And when he he'll have kids of his own, you'll think back to now and see how far you came and how scared you were. It will all work out.

  4. Stephanie,
    Just like many others, my thoughts and prayers are with you and your family, and especially with little Lucas. Your mention of your use of Windex is prompting me to suggest that you look into the harmful (shocking, scary, etc.) affects of common household products/ chemicals on people, and most especially on young children. It is scary that the FDA lets many of these products slip through the cracks. My suggestion is that you seriously look into how horrible common cleaning products, cosmetics, lotions, pesticides, laundry detergents, etc. can be on people, and begin converting your household into an 'organic' one. Converting your home into a safe, toxic-free place can make a world of difference — research is out there about how detrimental these products can be to the development of fetuses and infants (as well the carcinogenic affects on adults). It also will likely make a world of difference to the future health and safety of Lucas and Abigail, as well as you and Phil. I know of many people who encountered similar problems and very scary health situations with small children and they made decisions to looking into what they could do — as parents — to not feel so helpless to their little ones. Making the home a healthy environment is a great way to start.

  5. Stephanie,
    You and Phil are doing all the right things. You are taking care of both Lucas and Abigail and both of them have needs right now. Unfortunately, their needs are different right now. Abigail does need her routine and if possible to minimal visits to the hospital for all the reasons that you mention. You are reassessing Lucas continually…and it sucks but that's what he needs as well, especially in this perioperative period.

    As for the 'i didn't build him strong enough'comment, umm I don't know either you or him but your description of the intensity of his cry begs to differ. He IS fighting.. but it is in his own way.

    Babies are miracles. You've already seen it with how well your twins have done following their early arrival. Lucas will pull through. This is just another bump in the road. It will be ok. You just have to wait… which right now is the hardest thing in the world to do. I know it doesn't make this any easier but we are thinking of you and family.

  6. Stephanie,

    I know it's not the same, but last Winter, my husband was out of town, my older daughter was at a sleepover and my two year old daughter and I were settling in for a cuddly girls night of pizza and the E.T. movie after coming home from a birthday party. All of my family is nearly 3,000 miles away too. Without any previous signs of being sick or having a fever this day, she started to shiver. I cuddled her with a blankie and turned on the fireplace. Suddenly, her lips turned blue and her nailbeds were also blue. I called 911, not knowing what else to do. The paramedics came and said that it was nothing, probably a cold and to just give her warm fluids and call the doctor in the morning. No need to waste a trip to the E.R. as there was a snow storm outside. I said forget that, get her in the ambulance now and let's go. As soon as the ambulance started going her eyes rolled back and she started vomiting heavily. I said, hurry up and put the lights and siren on, step on it. It never even occured to them and they took her to a hospital w/o a dedicated pediatric ward. Once we got there, they took her temperature, which had risen to over 105 from 98 in less than an hour, ripped her jammies off and packed her little body with ice cold towels and packs so that she didn't have a seizure they said. Labs and x-rays confirmed that she had pneumonia and her white blood cell count was over double the amount a baby her age should have. She was rushed to the pediatric hospital. Four different doctors told me four different diagnoses, none being pneumonia (which turned out to be a shadow on the x-ray). She had a mystery virus, and three other kids in the ward all had the same symptoms. It was horrible. I never left her side, and showered at the hospital when she napped. Thank goodness for friends and neighbors who took care of my other daughter and pets. Even if you don't know them that well, just take whatever help neighbors offer. They mean well and it's really amazing that even people you thought were a-holes turn out to help.

    It's weird, but playing soccer and mostly fullback for most of my young life, or maybe it's just the Irish scrapper in me, you get a fierce determination to kick ass and conquer and win whatever obstacle comes before you. I willed all my tough spirit to her tininess through kisses and long looks and holding her little hand between both of mine and plenty of prayers. For nearly two weeks she was fighting this virus in the hospital. She pulled through just as fast as she fell ill. Sometimes there are no warning signs for this. During the previous fall season she had strep throat back to back. Turns out that some of the other parent's kids in the ward had similar histories. Be careful to keep your kids isolated when recovering from strep, it can lead to so many other things if not knocked out quickly.

    Anyway, I know Lucas was never sick before, and this is a good sign that he's healthy and tough. His loud scream means he's got a strong character. They don't know a lot about this disease, and babies get the weirdest illnesses that you never hear of later in life. Some kids have deathly allergies in infancy and outgrow them by toddlerhood. I'm sure he'll be feisty and loud and living large just like his mommy. Don't worry so much about the future and at this age Abigail won't remember that you're giving him more attention than her at times. She can tell by the way you look into her eyes and nuzzle and kiss her that your loves the same as always. Just will your big spirit over to him to get through this now.

    Take care. You're doing a good job and don't worry, my baby prefers her Daddy too. Their allegiances go back and forth throughout their little lives.

    Remember, kids are very resilient. They're not as tired and jaded as the rest of us and everything is more exciting than what came before. They tumble through a lot.

    Heath
    Congress Ave.

  7. My favorite saying is that the day your child is born, you grow another heart. (in your case, you grew two!) It is like you had no idea that much love could fill you when you already seemed complete, and Aha! That is how it happens….you just grow another heart!

    Unfortunately, that makes for a lot of heart to break, too. My son had some serious health problems as an infant and toddler, and I was physically ill everytime I had to hand him over for some procedure. Your heart splits right open and you think, my job is to protect! How torn am I?

    It gets no easier, but remember only that Lucas feels in his heart all the love surrounding him. Try to get through it knowing everyone is doing all they can to heal your little bean baby. You are in my prayers, and I was waiting for an update before going to bed! :)

  8. I've been thinking of your family since I heard the news. There is nothing you have done to fail your children, Stephanie. Your love, fierce as it is, will be enough.

  9. I can't imagine what you are going through and I have nothing to say that can make anything feel any better, I just wanted you to know that we are thinking and praying for you, Phil, Lucas and Abigail.

    and don't apologize for being a mess, you are allowed to be and I am sure everyone gets that.

  10. Sometimes you just want someone to say "you know that sucks." Well it does suck. I am so sorry for you and all that you are going through.

    You are strong even if you feel like a mess….the strength just comes on through. I can tell.
    Chin up darling!

  11. You past few posts hurt my heart. My bean is only a couple months younger than yours and I can't imagine what you are going through, how you are feeling. I could barely handle having to hold her down for her shots. Her face crumpling and tears welling up broke my heart and I never wanted her to have to feel that pain again. I guess we have to take comfort in knowing that they will not remember this pain. When I was a year and half I had meningitis and spent 10 days in the ICU. I have no recollection of the shots, of the spinal taps, of the medication. What I do know is that my mother was there for me and did everything she could for me to get better, to be better… not that I remember but I do not doubt it. I just feel it.

    For now just keep climbing in that bed with him and letting him feel you near. You are an amazing mother and I have no doubt that Lucas feels that and believes it too.

    Hang in there.

  12. Well, sister friend, you know all your reader friends out here are waiting for each good news nugget about baby boy that comes our way. I echo thank you, thank you for sharing this with us and letting us feel a little bit of what you feel. We join our prayers with yours for a happy future for your family.

    This all brings such vivid memories of holding some of my children till they cried so much at med procedures, I was certain cardiac arrest was moments away – sure they would hate me forever for 'making' them do the test or the stick or the whatever – and then bit by bit, you get through it, they don't hate you, they improve (or they don't), and if they don't, you learn to move on anyway, then weeks pass and years pass and all of a sudden, you look at this capable, macho, hormone busting teenager who wins races and makes the girls swoon and gives you neck rubs and has all this power to burn… and you lose your breath and think, when did this happen?

    Keep on keeping on – we're pulling for you guys.

  13. I can only imagine how you feel..thank goodness the scan was fine. I'm thinking you're operating out of the new children's hospital, and that's state of the art. You're in good hands. I feel guilty that I didn't come meet you at your Christmas Tree event…it's difficult to read about this and be in Austin and not be able to help!

    You're very strong. Your boy is strong, too.

  14. It's heartbreaking when your baby has to be hospitalized, even if you've been reassured that he or she will be fine. My young twins have been admitted about half a dozen times (total) since our NICU days for various tests and procedures and I learned something interesting in one ER: the go-to folks for tough needle sticks are the EMT workers. They have to be, for obvious reasons — so ask if anyone's hanging around should there be difficulty inserting a line in the future. You are doing a great job, honey, with both kids … the best mommy they could hope for! Don't forget to take care of yourselves during this ordeal. Hugs from New Jersey.

  15. Glad to hear your son is doing better and you have him back home.
    Sometimes there's nothing anyone can say to make you feel even a bit better. You just have to wait it out and feel better/less helpless when you do–whenever that is. Maybe the "be strong" sentiment is in being able to survive the until-it-gets-better part.

  16. Your love for both babies is beautiful. Sending good wishes and hope that somehow, life will be more peaceful for all of you, soon.

  17. Look, I know this isn't easy. The part about you not wanting him to get used to it–a life of doctor and x-rays. Let me say this, and I know you don't know me so it might not even matter, but I think I've been there, or near there, or at least at the same stop on the train, if not going to the same street. My mother was sick and sick and sick when she found out I have cancer. She told me that she thought she'd failed at something, at actually MAKING me. She made something go wrong when she was making me.

    I want to tell you something: I NEVER THOUGHT THAT, NOR WOULD I EVER THINK THAT. I would repeat it, but it's in caps and all, so I'll just trust that you read it.

    And you know what? I see doctors all the time. I get IV's put in all the time. Every other week, or something like that, for all the chemo they develop and drip into me for all these years. And even though it's sad for you to think about, a child, a human can and does get used to it. It is actually possible for a body to get used to these things. It is possible for a mind to come to recognize them as normal.

    That, I am positive, is sad for you to think about. It is wrenching for you to think about. But here's the thing: It is not all that sad for the person getting used to it. It is possible for these events to transpire and for a child, for a person, for an adult, for an infant, for a mother–to just get used to them and understand and realize that this is what life is going to be. It doesn't even take strength, because there is no way in hell that I would ever choose not having been born over this life with its doctors and needles and x-rays. There was no question, ever, in my mind about that. I would rather be alive and have a slightly damaged body than to never have known life and to never have lived a second or a year of it. I've been sick for ten years now. I'm not getting any better, but DAMN if I would ever give it up.

    And I love my mother more than anything on this planet, and I do not want her to think it's her fault, not for one single second. Please, please believe me. Please.

  18. You are right this does suck! Once you have a child, hearing of any child going through just a moment of misery is almost too much to bear. The upside of that is that when your fellow mother's tell you their heart aches for you, it's a real honest to god truism.I have 2 boys and one of them went through some major ER experiences his first year and when I ask him now about it he has zero recall. Although I still remember the face of the damn nurse who couldn't get a damn needle in his vein and informed me she was the only one available.
    I was a mess and the baby was so stressed and I couldn't imagine why I was so cocky as to think I could be a mother.
    Well shit man this part wasn't in my realm of possibilities
    during pregnancy.
    You will find your nook in the world that you have entered these past few days, and it won't always be like this. an even keel will slowly come about, you are just in emergency adrenaline mode, and feeling you have to remain hyper aware. Normalcy is around the bend you just can't imagine it will ever exist, it will.
    As I said we ache for you but you will be on an even plane very soon. you will feel PTSD just like anyone having gone through a rotten stressful time,then you will find your groove. You just won't realize it's happening.
    With you more than you realize!
    Fellow mom

  19. I was catching up on your blog tonight and suddenly I'm reading about little Lucas in the hospital. Wow!
    My prayers and well wishes are with you, Phil and little Abigail.
    Also, maybe you should let your family come and help you out a little. I know sometimes it seems more stressful and a bother to have them around, but you'll be surprised, it might be a blessing in disguise.

  20. Hon – you're doing fine. You're great. It's awful. He's improving. There's no pain on earth like hearing your little one cry in pain…

    I had to take my 15 year old to get a minor sugery done this year – and I'm sorry to say, it doesn't get easier just cuz they get older. She bawled – I bawled. I felt like I failed her – I wanted to kill the doctor who was hurting her…though intellectually – of course – it was necessary.

    My mom came the recovery room after I had surgery last year – and I swear, she wanted to kill the doctor that made me cry too. She cried when I cried. For god's sake – I'm 40!!

    It's how the species survives. We love them so much it hurts.

    You're amazing – maybe you're acting, but you are doing what must be done. I'm with ya…

    Thanks for keeping us in the loop – C&S.

  21. You`re a great mom! It`s normal to feel like that and like 3 teens mom said it wont change no matter how old they get.
    I`m happy to hear that all the tests came back OK and Lucas will be home soon again.

    Hugs

  22. Oh Stephanie.. My heart is just breaking for you.

    You are not a failure. You are not a failure. You are not a failure. You are NOT a failure.

    You have done everything perfectly so far. You carried those babies with such care.. you nurtured them.. your body did all the work necessary. When this surfaced, you got him help immediately. Even the heartbreaking stuff, holding him still for X-rays and IV sticks and CT scans, even the stuff that makes him wail like he's in agony.. you're doing it all exactly right. Even your reactions – the helpless feeling, the frustration, the "why God why??"s and "What could I have done differently"s.. any parent in your situation would be thinking and feeling all those same things.

    It sounds like Lucas has had a particularly bad day today, with all the poking and holding down and testing. They won't all be this bad.

    I understand your disdain for the "be strong" sentiment, even when it's spoken/written with the best intentions. Perhaps a more specific way to think about it could be: Just take it one day at a time. Or one hour, or one minute at a time. Get through each little bit of time trying not to blame yourself for what's happening to Lucas, or stress over how it's possibly going to affect Abigail, or whatever other thoughts you find yourself in that you know are unhealthy. Try to be kind to yourself, not distract yourself from your efforts to comfort Lucas and process this, and you'll find the strength to get through each minute/hour/day/whatever. You will.

    You can absolutely do this. There is no doubt in my mind. As helpless as you feel right now, you are still doing everything Lucas and Abigail need you to do. Just remember that: you have been and are doing everything right, and you'll continue.

    You're all still in my prayers, Stephanie. I wish there were more I could do or say for you.

  23. you're a fantastic mother. it's easy to blame yourself because it gives you something or some sense of control in a time of uncertainty. remember, even the greatest of mothers, which includes you and my own, are allowed to be complete messes sometimes.

  24. An old boyfriend of mine used to work as a phlebotomist in pediatrics and maternity – I remember the day he came home all upset because he'd missed a vein. It was the first time he'd missed in three years. I wish I could Fedex him to your hospital so he could at least make one thing better.

    This probably sounds cheesy but: this is a crappy situation and you're allowed to freak out. You're allowed to be terrified and not know how to handle things. I know I would be too. As for acting like things are normal, that works for some people but not for others. If you need to spend time cleaning to remain sane, go clean. If going for a run is what works, do it. Do what you have to do and remember to try to eat and sleep.

    I don't know you except through your writing, but I know that I want you and your family to make it through this. There are a lot of people out here who care very much about you.

  25. Stephanie, being a parent is the hardest job there is, and part of it is being an actress, for the sake of your kids. My youngest, who will turn 9 in a week, has developed OCD symptoms, which is actually symptomatic of another illness she has. The dr saw her in June and then again about 1 1/2 wks ago, and he couldn't believe the drastic change in her. It came on suddenly and severely, and she's so frustrated. She has horrible, obsessive thoughts that she can't get out of her head, and when it comes on, she tells me that she hates me, hates herself, misses her old self, wishes she was dead, etc. She's not even 9. It's killing me to see her suffer. She may not be suffering the same way Lucas is, but she is miserable, and my sweet, caring, animated, loving, delicious child is hiding behind this frightened, lost, angry, nasty stranger. So, when she asks if I'm upset when she behaves badly, you better believe I become an award winning actress. She feels bad enough; she doesn't need to know how terrible I feel too. I tell her that I love her more than ever and that hopefully one of the medicines we're trying out will start to work, and she'll feel like her old self very soon. God, I hope so, because, believe me, right now I feel as helpless as you can imagine, and it sucks. But, I know we'll get through this b/c unfortunately I've had the sad misfortune of having to deal w/ similar issues w/ my other 2 kids. And, as much as you hate to hear it, it has made me stronger. I just have had no choice.

    You are not a failure. You're a loving mom who is hurting, understandably. Try to hang in there, and lean on Phil when you feel like you can't. Accept help from others and take care of yourself. Wishing all of you the best. So sorry you're going through this rough time.

  26. Stephanie, email me – I've been where you are dozens of times. It never gets easier and you will always need the support of "people in the know". If someone hasn't been where you are, they can sympathize but they can't empathize.

    Email and I will give you my cell phone number. I want to listen, Sweetie.

    Deborah

  27. Hey Stephanie,
    I've been there too. the worst thing in the world is seeing them suffer and being helpless. the desperation to do anything to stop it — pull a Freaky Friday with him so you can take the pain and he doesn't have to. it is awful.

    This is such a low point right now, having to take him back. it really won't always be this bad, and it's totally normal to feel like a mess. I'll definitely be thinking of you all

  28. Stephanie, how could you not be a mess right now? The point is, you're a mess and still doing everything you can as a parent. Although I don't have kids, I am a speech pathologist who works with the early intervention population. I have nothing but admiration and respect for the parents who are sent down this awful tunnel of not knowing what'll happen next, but are doing their absolute very best in taking care of their child. I believe you are "staying strong" (God, I hate that too), in reaching out to others, remaining aware of your feelings and being present for Lucas and Abigail. I don't think you could do any more than that (yes, I know, it still doesn't seem like enough, and I wouldn't expect you to believe it). All the best to you, Phil, Lucas and Abigail.

  29. A few years ago I saw my mother (who is the queen of stiff upper lip / stay strong / tough it out) deal with my sister, her eldest child, going through cancer treatment. Surgery after surgery, radiation, chemo…she was a mess on some level too. And her baby was 44 years old at the time.

    I think she drove my sister a little nuts some of the time, but I know she always wanted her around. Because when we go through scary times like this, we all really just want our mommies, right?

    I'm sure Lucas needs and wants you around. Now go to Baskin Robbins, already!

  30. Oh man Stephanie. I know this is just so hard. You just have to love Lucas through this. and that I know you can do and absolutely will not fail at. you will be a mess for a while. and that, is totally ok.

  31. Steph,
    I'm so sorry that you are having to go thru all of this. My middle son was sickly up to about age 10. It's the most helpless feeling in the world. He's 19 now and I still fuss over him every time he has a sniffle. But I do with the other two as well.

    You are becoming one heck of a mom! I'm proud of you!!! You are doing a fine job! Just trust your instincts. They're always right! Even when Phil suggests otherwise – trust your instincts! That's the best advice you'll ever get!

    Hugs!
    V

  32. I agree, I hate "be strong" – as though people think that's never occurred to you.

    Get angry. Get sad. Get depressed. Get scared. Get whatever you need to to be able to get through this. It won't make you stronger, it only makes you more aware. Any emotion that you feel now, no matter how minute or extreme………..is okay. It's acceptable, no matter what anyone says to you nor how they look at you nor how they sound on the other end of the phone.

    Other people don't get it. Don't understand. Don't realize that every breath you take chokes you because you're so scared and so angry and so overwhelmed that merely getting dressed in the morning sometimes is the biggest accomplishment of your day.

    You'll be there for Lucas. Your heart will break for every tear he sheds, for every time he screams, for every pain he feels. You'll be there for Abigail when she smiles and when she looks for her brother and for when you know she's feeling lost without him.

    It's not fair. It doesn't make sense. There is no reason for anything unexpected happening.

    The only thing that matters now is that Lucas knows you love him. He knows when they're sticking him for an IV, when they're x-raying his tiny body, when they're examining him. He knows because he can feel it. Through your fear, through your tears, through your anger…….Lucas knows that you love him more than anything.

    I understand. I can relate. He wasn't my son, he was my nephew. But I was there in the hospital when he was born and I was there for his other hospital stays. My heart broke everytime he cried and everytime he looked at one of us to make it better, to make it stop, to make him well.

    You don't get over it. You get through it. It stays with you always. When he's better and running through the house and you're praying for five seconds of quiet and then you remember these days and hate yourself for wanting him to be quiet, to not be 'such a boy'………..that's when you run to him and sweep him up into a 'mom hug' where he'll squirm and giggle and you'll be thankful because you know that whatever is coming next, this experience right now, makes you better prepared for it.

    Like Phil said, you're a family. And you know from your family, they are what/who gets you through.

  33. Several comments running thru my brain,so sorry for the randomness of my thoughts today.
    First I want you to know, when you look back on all of this, you know, the bright future part, where all of this is behind you and you're watching him win a golf tournament or something….the things that matter, and that your son will remember, is that you were there for him, always and forever. And, he will remember your singing. My kids to this day, and the youngest is now 12, tell me their earliest 'mommy and me' memory, is of me singing to them. So Stephanie, just keep singing, holding, touching, and singing some more.
    Next, I wanted to tell you to "Give it to God, and don't ask for it back" Once you tell Him, I'm too weak to handle this part on my own, I need you to be in control please…He will. Thank him for brilliant doctors, thank him for medical miracles, and of course, thank him for your beautiful Lucas, and then ask him to take it from here so that your little bean is safely home and healthy with you again. And something else I wanted to say, it's ok if he likes Phil better right now…it may be that he senses your anxiety more clearly than he senses Phil's…so let it happen. Let Phil be the strong one who holds him and comforts him, and you be the toucher, the singer, the backup caretaker for now. Maybe, it's what Phil needs too :)
    And lastly, thank you Stephanie, for being brave enough to share this with us, your thousand strangers, who are so invested in this and sending you all the prayer and strength we can muster, hoping that it's being received by you and used when needed. Saying "we're here for you" seems ridiculous since very few of us know you personally, but, in faith, in prayer, in strength, we are.

  34. hi stephanie, take some comfort in the fact that he wont remember all this…it usually is harder on us 'mamas' than it is on the babies…

  35. I haven't checked in for a while, and just read this news about Lucas–"Stay strong" sounds piddly. I'll just keep you all in my thoughts and prayers. God bless.

  36. I have one child who was born too early, who had multiple issues, some related to prematurity, some not.

    The first six months were nothing but a medical blur mixed with heart-rending moments of utter clarity. And everyone kept marvelling at how "strong" was, but to be honest, I was on autopilot. That was the best way for me to get through it, I guess, I certainly didn't decide to be in autopilot mode.

    Anyway, I broke later, when things had calmed down and I had time to think about how much it all just completely sucked.

    And then do you know what sucked? People telling me I should just be happy to have my child. Yes, of course I was happy, but I still had to mourn that lost time.

    It's a very real loss, the loss of blissful, "no need to worry" motherhood, so being told to be strong or just to be glad a child is alive, etc., is just so absolutely useless.

    I'm sorry you are going through this. Deal with it however you need to, because it is definitely a hairy, raw deal.

  37. Reading this reminded me of how often I feel like I'm a mess. And not just any mess, the worst mess in the world! I think it's less about strength and more about one foot in front of another for the duration. One step at a time until you're on the other side.

  38. Moms are rocky roads. Forever. Give yourself a Baskin Robbins cone with a mess of love from Huntington, LI.

  39. what an lucky boy he is to have you. i've had glimpses of this sort of terror, but living through it right now must be overwhelming. and yet you shine.

  40. As a mom I know how hard it is to see your child suffer and feel helpless. For me it`s always the hardest part to be a mess AND to give comfort at the same time. To say "it`ll be over soon and you`ll be fine again" and to think to myself "and if not?" It`s more than ok to feel like a mess then, I think it`s normal. And it doesn`t mean that you`re a failure, it`s no reason to doubt that you`re a good mom. And I have to tell this to myself from time to time because I too tend to doubt myself as a mom, especially in hard times. But hey, we love our children, we do what`s best for them even if we`re a mess – how could we do better? Maybe we should try not to expect perfection from ourselves…

  41. I wish I had words to make you feel better during this hard time. Hang in there. You are in my thoughts and prayers.

  42. You don't sound like a mess at all. You actually sound like someone who has a better handle on her emotional state than most people would have in your situation. No one needs to tell you to be strong.

    I cannot imagine the helplessness. I truly cannot. I don't know who could live through this experience with steely resolve and Martha Stewart composure. I don't think I would want to know that person.

    I think you are doing the best you can. I will continue to hope for your family.

  43. Stephanie, I am VERY sorry to hear about this. You've done everything right as a mom, don't second guess yourself. Nothing else matters when your children are sick. Best wishes, courage and strength to all of you.

  44. Dear Stephanie and Phil,

    I pray that you continue to receive renewed faith, and strength.

    There is power in numbers, so I have no doubt the all the prayers coming to you will serve Lucas and you well.

    God Bless you, and all who are sending prayers your way…

  45. You are not a failure and this is not your fault. Sometimes, life throws us curveballs – nothing that you or Phil could have done to prevent this. You know the old saying "God doesn't give you anything that you can't handle"? Well you are a strong woman, and sounds like you have a strong family. Lean on them, my prayers are with you and your sweet Lucas, as well as Abby and Phil.

  46. You're not a mess. You're a stressed, anxious mother. Lucas will get better, and you will adjust and cope with grace. Now grab your windex. Those TV and computer screens aren't going to polish themselves.

  47. It is because you are stressing about these things that makes you a wonderful mother. I would be more worried about you if you weren't concerned so much. You love him so much and you are doing everything you can for him. My husband is the playmate for my kids and I was jealous for a long time…until I realized that every tear, every booboo, every sadness was saved for me. I have made every trip to the ER with my kids. I have slept with them every night that they were sick. I held their hot little bodies and made it better for them…even though I secretly feared I was missing something and what if this time it is a really bad soemthing. You will in time learn to trust yourself better (but never compeltely). You will learn that something inside just tells you it is ok or it is not ok.

    You are a great mom and worrying about both of your children is part of what makes you so great!! And yes, ice cream does help!!

  48. You are probably in shock – treat yourself accordingly and maybe ask to see someone at the hospital or go to your own doctor – I think if it was me I would ask for an anti-anxiety pill or two or three. They should have hospital staff to help parents cope with scary diagnosis and maybe they do? Maybe you should re-think not having family come to help you – I would be awfully hurt if my daughter didn't want me to come and help – especially if she had lots of room. Take care.

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