I need to vent. I don’t like talking on the phone because then I have to hear tone, those small sounds that seem to make it across the phone lines. A sigh or a slight tsk. The heaviness in words and breath, it all has texture when I can hear a voice on the other end. I feel myself trying to calm other people. Wanting to put their minds at rest, which in a way, I guess they hope they can do for me too. But I hear myself lying. Not strength doing the talking, not protecting the listener, but mostly–and this seems so out of place–hiding things to avoid some kind of judgment. When I worried he might be autistic or next, worried he might have some shade of mental retardation, I didn’t want to let anyone think it was a possibility because I didn’t want their pity. I didn’t want their, "isn’t it horrible what she’s going through." Even though these things are said behind my back, not to my face. And it does suck that I’m going through it, but hearing the concern makes me defensive. "Don’t feel sorry for him!," I want to snap. "He’ll be fine, you asshole!!!"
But I don’t know if he’ll be fine. And it makes my face twist into a knot, and liberates a wail I can’t suck back in. And I cry and shake into the hospital sheet. I want to protect him from your thoughts and so sorrys. From the possibilities of what this can be, and from anyone who ever underestimates him. And I guess it hurts most when I underestimate him. When I hear from the doctor that I should be very concerned. That the fluid had a white blood cell count of 150, and it should be in the single digits. That there’s high protein in there too. And these aren’t blood work results. It’s spinal fluid. Something is going on. It’s not benign. It’s serious.
Infectious disease doctors come in to speak with me, asking if I ate raw meat or gardened or was near a cat when I was pregnant. No, I respond to all these things. No infections. No fevers. No sickness through my pregnancy, and he’s got a healthy twin who was in that womb with him. They want to rule things out. "If it is meningitis, it’s not the kind that college kids get, where they’re fine and then tragically die the next day. And besides, Lucas is not acting like a kid with meningitis. He’s smiling and cooing and he has no fever." Still something is wrong. People crowd into our room wearing yellow surgical masks and gloves now.
The spinal fluid was then drawn from his shunt (the same type of fluid, but this time, not drawn from his spine but from his head), and that fluid is clear. In an hour, they say, they’ll have preliminary lab results on that fluid, letting us know what the cell count is on that fluid. And an hour goes by, and I start to pace and ask for it. Over and over. "Well it’s not in the computer." I don’t care. Pick up the phone and call the lab. The neurosurgeon said I’d have the results in an hour. "Well I just called the lab and they said the tests they wanted to run had to be sent out and we won’t have them for days." NO! That is not true! Except I don’t scream; it’s not my way. "Listen, I don’t care what they said, or who you need to call, but I should have results now. Period. Someone screwed up. I don’t care who it was. I just want an answer." The nurse takes off, returning with the news, "well, the test was put in, but for some reason the order was never put through, so now the lab will have the results in an hour from now." I could do without all this. I shouldn’t have to be, quite frankly, on top of these kinds of things. I should be comforting and feeding and watching my son. And maybe trying to sleep so I’m not completely useless tomorrow.
I will hopefully, within another half hour get the cell count from the clear fluid that was drawn from his head. Though I don’t know what that even tells me. Let’s say it’s perfect. So what? What’s next? We’re still waiting around for DAYS for all the infectious disease stuff to get back. TB, Toxoplasmosis, Meningitis, and who knows what else they’re testing for. Initials. CPV or something like that. They want to rule everything out. It could be the shunt, but why would the shunt fluid be clear?
So does this mean the yellow fluid they tapped from his spine is completely unrelated to his shunt? We don’t know. I don’t have answers. When I hear they might have to remove the shunt, just to rule things out, I begin to panic. Phil and I agree we don’t want to be alone anymore. We call our families and tell them to please come. We cannot do this alone. "I want bodies in seats," I say to him. "I need our family." And he agrees, completely. There is, holy shit, a first for everything.
And I’m thankful for this blog because the I’m so sorry’s don’t ever hurt when I read them. Is there anything I can do never hurts. It’s only when I hear it. It’s why I don’t answer my cell phone. It’s why I haven’t called any of my friends back. It’s not because I don’t need you… I just can’t bear to bring myself to say it all again, to hear the apologies, to tell me you’re there for me. I know. But this is what works for me. A computer screen and a world of people who can reach me through it.
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Ok, so we're here for you, whatever, however you need us to be. Seriously. If there is something that one of us can do to help-put it out there in print. If its online research, a referral to a doctor or hospital, a website, a sounding board, a prayer chain, we're on it. Just say the word.
Answers and waiting games, suck. I think it's good..great..that you've put the call out to the family to be there with you. You're frazzled and they will offer much needed support.
Prayers for healing for Lucas, prayers for strength for you.
~C~
Once again, such honest writing.
I'm so sorry you have to go through this. From afar, I think of you often and send positive thoughts your way. I cannot imagine how it must feel to be without answers.
The way you cope and the way you express your love for your family is stunning.
Sending positive thoughts and rays of hope your way. Remember, this too shall pass.
I have been visiting your blog so many times every day to see what is happening. I am a total stranger to you but you and your family have been in my prayers for some time now.
Hugs. I dont want to say anything that will make it worse, just hugs, and know that a cyber world-full of people are praying for Lucas and you.
You have a whole lot of bodies in seats all around the world rooting for your guy. I wish the best for your sweet family, Stephanie.
Hi Stephanie,
I've never left a comment, here or anywhere. Maybe because no one else has left a comment I feel compelled to write my first, your first. I'm a former austinite living in New Zealand, so it's evening time here, wee hours there. I just wanted to let you that in my far, far corner, thousands of miles away from breakfast tacos and bar-b-que and tequila and my beautiful family I'm pulling for you and your beautiful family. Our days are flip-flopped, so I'm awake when everyone there is sleeping (or not, but should be), so I'm taking the night shift on the well-wishing and positive thinking.
I am sending positive vibes from the other side of the world. God Bless.
Layla.
Sydney,Australia
Stephanie–I just wanted to say that I have a 4 year old daughter who was born with a rare medical condition. She has seizures and many serious medical issues, and I can completely relate to what you're going through. I want you to know that it's okay to cry and to scream and to do whatever YOU need to do right now. When we were going through the shock and grief of my daughter's diagnosis, I used to take extra long showers so that I could cry my eyes out. I always felt like I had to be so strong for others, and so the shower felt like the only "safe" place to let it all out. Take care of yourself & know that you are not alone. I will be praying for Lucas and for your family during this time.
Fuck, fuck, fuckity-fuck. I know I am here with words again, but, once again- if you need anything. And, I am so sorry.
I know sometimes people (myself included) say that we are praying, and then don't follow through. Or, we do "laundry list" prayers, where we name off a list of names of people for God to know we are thinking about. But, he knows, and seriously, I am stepping up my prayers for not just Lucas, but you and the whole fam-damily right now.
And, prayers for wisdom- for the drs. who are reviewing the labs and whatnot on Lucas. :(
This sucks. Just really sucks…
If it doesn't hurt to read it, then just let me say…I'm so sorry that you're going through this, and am glad that you have this computer screen to help you voice your feelings, fears, and anger.
I'm glad the strangers on the other side of computer screens can do any little bit to help you through.
We are with you Stephanie Klein. Our thoughts and our prayers and our courage — you are not alone.
You are in my thoughts and prayers.
You, Phil and tiny Lucas are in my prayers, Stephanie.
Much love and healing.
They will figure it out, and you and Phil and Lucas will have peace. The waiting *is* the hardest part, but you are moving through it and you will get to the other side.
I can't imagine what you're going through, and I won't even pretend to understand. I don't want to try and placate you, either. I just want to say you are all in my thoughts and I am sending good energy your way. I'm glad you have family coming – it will help Lucas because it will help you and Phil. Stay strong…
All I can say is that you and your sweet son are in my prayers. Hoping for some good news soon, Stephanie. Big hugs from across the Web to your family.
My heart and prayers are with you and your family.
you are kind and gentle not to scream; indeed you shouldn't have to be on top of all that.
i think that everyone can relate to not wanting to actually HEAR those statements.. there's such an uneasiness in those moments and it's multiplied by knowing that when you hang up the phone, they will be taking about your "situation" with someone else. of course, it's not a situation, it's an adorable and strong baby boy, your son.
Lucas is going to be just fine. I know it. I can feel it in my bones. Call it intuition, but I just have the strongest sense that all will be okay. Strong enough that I actually posted. I never post, just lurk. Don't discount the power of your love or his strong will….and I am sure that he does have a very strong will…he is after all, your son. ; )
Glad you have family coming. Lean on them and try hard as it may be to keep your chin up. Sending nothing but positive thoughts and lots of prayers your way…….
I've been reading your blog for a while but I never left a comment before. My eyes welled up when I read this. I wish I could be there to be one of the bodies in the seats. You are in my thoughts and prayers.
I popped back to see how you are doing and very glad your world is soon to be populated by people who care. They will hold you together with sticky tape love, your bean is in good hands, and this too will pass. Shalom
I'm not a church going person anymore, but I am a spiritual person. And I'm sending more prayers for you and all of your family. I live off 360 in North Austin, and if there was ANYthing I could possibly do for you to help, I would do it. Need a dog walked? Need the lawn mowed? Need ANYthing? Email me. I will help any way that I can. I meant it.
We love you, Steph. Hang in there. Let me know if there's anything you need.
Gosh Stephanie, as a mother of twins also, I can't imagine your pain and agony right now. I hope that you get answers soon because I think the not knowing is as bad as anything. Maybe some of the other readers are right, consider transferring him to that specialty children's hospital that they were recommending? It's good that you have family on the way.
I've been reading about what you and your husband have been going though. Nothing is worse than when your child is sick and you don't have answers.
Answers you can and will deal with – it's the 'not knowing yet' that's the worst.
I think you are using all your coping mechanisms to get through this for you and your baby son….not answering your cell phone is fine – going into "shut down mode' is what you need so you can prioritize and live for the next test or MD comment.
As for how the hospital works – someone dropped the ball with the test – (the MD who prob didn't realize he had to put in some seperate order for the test to be read immediately) Just be vigilant and you should consider taking him to a bigger more specialized hospital. When it comes to my family I go to Univ.of Penn in Phila, or we've been to the Mayo clinic in Minnesota. They have state of the art EVERYTHING and the top doctors.
Hi Stephanie. I've read here for a while, but never commented. I guess I just needed to touch the keys my laptop, in hopes of somehow touching you. Having a child puts you in a secret society of sorts–you have to be a mother to belong, and there is no way to understand the rituals, happiness, and pain until you get there. Certainly there is nothing that makes a mom feel helpless more than a sick child, and nothing more scary than not knowing what's caused it. We've never met, but I'm a mom too. And I feel with you.
You did the right thing in asking for help from your family. This is too big for the both of you, you will be amazed what having your family with you will do.
stephanie, i rarely comment on your blog but my heart is just going out to you at the moment, you must be very frightened. maybe try and speak to even just one close friend – i'm sure it might help relieve the pressure just a little? am sending healing thoughts your way…
Sending you positive, calming vibes all the way from Australia.
You are so brave for many reasons. And now, for asking your family to come be by your side. It takes guts to ask for help.
I live in Austin, and I know you don't know me, but if there's anything I can do, even babysit, let me know.
i have never written before, but i read you every day. you are amazingly strong, and i am thinking of you and holding you and your family in my heart-
Stephanie,
I can only offer transatlantic bloggerly solidarity – I wish there was more I could do, because I really do feel for you.
I suppose all I can say is that all of us out here, on this interwebthingy, are feeling for you and hoping, with all our hearts, that you and your loved ones will be OK.
Best wishes,
Abby x
No mother should have to go through shit like this…ever…but we do and we somehow survive it. Your baby boy is in my thoughts and prayers. There are no other words to say except 'I am sorry you have to go through this'.
Wendy in Oz
After reading this post, my heart is aching for you, Stephanie. I have read your blog for a long time, and love reading about the twins and your joy in them. I am not an eloquent writer, or any kind of writer, for that matter, so the words I want to say to you as one mother (of an 8 month old son) to another probably won't convey all I want them to do for you. I have hoped and prayed for Lucas since your first post about him being taken to the hospital. I have cried with fear and worry for him, I guess much like I would do with my own son. I'm not normally a very open person, but having a baby, and then having my heart in my throat for the first weeks with pure joy and love for him, well, it changed me. I am a stranger to you, but like so many others have said, please know that there is another person in the world thinking of Lucas and hoping that he is going to be O.K. I hope you get some definitive answers soon, and that you are comforted by God, or a higher power, or whomever you like. I am glad you are calling your family to come, they will no doubt bring you comfort just with their nearness and love.
I will keep Lucas in my prayers, God bless.
I am a mother too, I feel your heartache.
You and your family are in my prayers.
Yesterday while running I said a prayer for you and Lucas (and I am not a religious person). Reading your blog is becoming painful so I cannot imagine what you and Phil are going through. I am so sorry.
Stephanie, you are going through something that all parents fear more than anything in the world. And you will look back on this time and be amazed at how strong you were and how united you and Phil remained. And you'll tell Lucas off for scaring mommy and daddy so much. From one mom to another I can't imagine how hard this must be. I'm sending you so much love and strenght, but no I'm sorrys.
you are not alone…there are no words that can comfort you now…only the presence, virtually and physically of those who know and love you.
may these scary hours go quickly for you and may you know that you are doing a wonderful job –
there are sometimes, no reasons why bad things happen to good people. but the journey is not in the answer, not in the "why" but in how you deal with these scary hours.
may you continue to find peace.
You have a world full of people reading as you go through this journey. Use us. Ask for whatever help you need. People and your family will come through.
Please know that hospitals and doctors and infinitely fallible. Be Lucas' advocate and ask for what you want 100 times until you get it. Get the best care available and keep venting. It does not make you a bitch, it makes you a mom.
My baby boy and I will say a prayer for you and yours. In a completely not weird way, in the way that ideally we should all feel for each other, I love you Stephanie Klein and here's a hug from OH- a big squeezin' hug. You are doing all you can and the best thing you can- holding that little hand and kissing that smooth baby cheek. I will be thinking of you all…
Sending rays of positive thoughts your way… for Lucas to be well and for his body to stop fighting itself… and for you to hopefully get some answers & some sleep…
prayers prayers prayers for you all…………..
Your family has been in my thoughts and prayers since this started. I'm so glad you'll have more family coming soon.
I remember when I read Phil's post that the babies were born and I cheered out loud for a family I have never met. The internet does crazy things and now it has become a support group for you and your family.
I hope this whole nightmare is over soon and you are able to find the peace that is found in a (boring) day-to-day life once again.
Stephanie, I am sending all the warmth, thoughts and prayers to you and your family. You are an amazing woman with an amazing family. We are all pulling for you.
I'm so glad you've asked your families to come. That was to be my only offer of advice – to lean on people, anyone who offers help – take it. I'm sorry you guys are going through this. Do you feel like Lucas is handling it better than you and Phil? I always find that comforting. He's a trooper. Take care.
How scary it must be to get those results. How terrifying and maddening to not be getting any answers yet.
It would get exhausting for anyone to answer the phone and answer all the same questions and offer all the same explanations over and over again, especially when all you can keep saying is, "I don't know. I don't know. We don't know yet." I imagine I'd probably turn off my cell, too.
If anyone in my life were going through this, I'd be cooking them serious breakfast every morning. So here's some virtual pancakes, Stephanie (small smile). I really wish I could do something for you guys, just to offer you a small comfort. I am still praying for you all, and I believe Lucas is going to be okay.
Stephanie, I know you don't want to hear it, but I'm so sorry. Not in a "what a pity" type of way. Like you, I have faith that Lucas will come out of this OK, but I know it must be incredibly difficult watching your baby go through all this. I know more than anything you just want your little family to be home together and to go about your lives as before. And so I'm sorry for what you're going through right now. He's going to be OK. All the prayers going out right now on his behalf to all the different Gods will see to that. I don't know you, I don't know Lucas, but I'm thinking about you constantly and hoping and praying for all the best.