I should be sleeping

And I will be soon. I just wanted to take a minute to say that I have spent a lot of time this evening trying to catch up with emails and blog comments and Facebook comments and the Ikeasaurus website (so beautiful to see Ike on there, Jenny), and to pay some attention to my other two wonderful children who we are working so hard to protect against the scariness of everything…. I have spent a lot of time doing all these things in a kind of fog because of everything that happened today. But even through the fog I know you are all out there.

Ike knows you're out there, too. As they were pushing him in his crib down the hallway to the OR and I was following and trying to sneak kisses on his soft soft head, I told him about all the people wishing him well. I told him everyone we know and people we don't know are all surrounding us and loving us and doing everything they can to help us. I know he heard me.

It is all just so difficult to process. Not just the trach and the uncertainties around it. But everything. I am not sure how we have ended up at the center of this fierce mama maelstrom of love and generosity. It is something that humbles me and even frightens me a little. We have become THAT family. You know? The one you read about or see on the side of a tip jar or something. How are we that family? How did this happen? I never thought anything could be worse than being hospitalized for 5 weeks with gushing amniotic fluid and a ticking time bomb sensation of not knowing when or how early my baby would be born. I never thought anything could be worse than watching my 2lb 5 ounce baby have bradycardias in the NICU.

But I was wrong.

All of that… all of that was just training for this. We were training for a race for life we didn't know we'd be in. And I am so thankful for those experiences now. I know how to live at the hospital. I know how to question doctors and sit in during rounds. I know what food is good in the cafeteria (chicken fried steak) and what to avoid (baked fish. shiver). I know that my heart will shatter for the wee one and the wee-er one, and I know that they are strong and resilient. I know that some nurses will break the rules to make all of us more comfortable. I know that some will not. I know other people in the hospital are worse off than we are. I know some aren't. I know our families will drop everything to help us and to be with us and to keep the routine as normal as possible with the kids. I know that I will cry a lot and that's OK. I know I will distance myself my husband because I am worried about worrying him and I know that that will worry him more and ultimately bring us closer. I know that my ten year wedding anniversary is on Friday and that I have the best husband, spouse, partner, that anyone could ever have. I wonder how I can deserve him. I know all of these things because of last year, such a trying year.

I cry and I tremble with fear and exhaustion because I worry that all of the determination and willpower and strength that I mustered and borrowed and stole just to get Ike out of my belly and into the world safely came from a finite source inside of me. I worry I don't have enough left to get through this. So much more time in the hospital. Seeing my baby with a hole in his neck. Learning how to take care of him and it. Having more doctors visits and possible surgeries to figure out why his airway is so narrow. Having to explain it to the wee one and the wee-er one. Having to be a 24-hour nurse to Ike when I can barely manage to not put his diapers on backwards – under perfect stress-free conditions.

I am freaked out.

Really, really freaked out.

But tonight I am also really really grateful. For friends who are family and family who are friends, and for strangers who are becoming both friends and family.

I am grateful for all of you and for what you are doing for all of us.

I am humbled.

I am frightened.

And I have to go to bed.

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31 thoughts on “I should be sleeping

  1. I cannot wait until you are on the other side of this and I am reading it in a fucking great memoir. And I know trach care, if you want tips/help/respite. You are ALL going to make it through.

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  2. Hey, a backwards diaper never hurt anyone. It’s when you try to put them on as hats that things go quickly awry. Hope you are already asleep.

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  3. Not that it makes it any easier, but you do it because you have to. And it will make you stronger. Love him, read to him, hold his hand if you can and let him know you are there. That is what you can do to help you all get through. Love to you all.

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  4. Kari,
    You don’t know me, but a friend of mine told me about your blog and your story and I’ve been following it recently.
    We have 4 special needs kiddoes. Two micro-preemies (a 24 weeker and a 25 weeker), plus two full termers with diagnoses all of there own.
    The past five years have been a blur of medical jargonese like bilateral stage 5 irreversible ROP, g-tubes, chronic lung disease, open heart surgeries, cerebral palsy, M.R., brain bleeds and more procedures and doctors visits than could ever possibly be counted.
    Sometimes you just need to sit and cry. Sometimes you need to sob. Sometimes you’re scared out of your mind that it just doesn’t seem like it can possibly be real, or possibly be happening to *your* baby. Sometimes you wish you could wave the magic wand and make it all disappear.
    At the end of the day, what always carries us through is very simple: I love my children more than anything in the world, and they love me. We’re not particularly amazing, or more wonderful, or more heroic. We’re simply mothers, doing what any mother does because like all mothers, our children are our everything; we’ll give every ounce of strength and emotional courage we have not because we’re necessarily brave, but because that is what they need us to do and so we find it somewhere deep within ourselves to keep providing it.
    It doesn’t mean that it does without tears, without screaming at the world, or without being absolutely terrified. But, every morning you wake up thinking “I’m not sure I can do this,” you find yourself at the end of the day and you’ve made it through. And one day bleeds into the next day that bleeds into the next day, and slowly….slowly….before you know it you look back and realize that you’ve been doing it, even when you didn’t think it was possible. And slowly as the hurricane subsides and you get the chance to sail into calmer waters, there is even beauty, and wonderful things to experience on the odyssey. Love and hope get us through so much.
    I’ll stop there because the last thing I want is to sound preachy or possibly offensive. I would be devastated to offend you. I’ve been when you are and it can feel so overwhelming and lonely. We are certainly praying for you over here, and for your precious son as we have been over the past several weeks.

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  5. Hi Kari- you don’t know me, but Jenny made my blog and that’s how I heard about your Ikeasaurus. I hope you have a good night’s sleep. I don’t know what to say to make anything less scary right now, but I am thinking and hoping and wishing all the best for your precious son.

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  6. Still dipping in the tip jar! But knowing that the rest of it is beyond my Earthly comprehension. You get my undying respect for what you’re going through. Many hugs and blessings…

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  7. Hello Kari, you dont know me, but I know about your blog through a mutual friend. I live in mexico and I am very touched by your story. My prayers are with you and your family. I have kept open the blog all day and will be open until everything is okay!
    I know I am very far but at the same time I am right next to you and your son hugging you all and praying for all of you!
    blessings and have a good night sleep
    Lisa

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  8. Hello Kari. You don’t know me but I know about your blog through a mutual friend and I am very touched by your story. I live in mexico and my prayers are with you and your family. I have kept open the blog all day waiting for updates and will be kept open until everything is okay! I know I am far, but at the same time I am right next to you and your gorgeous and precious son hugging you all and praying for his fast recovery.
    Many blessings and have good night sleep.
    Lisa

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  9. I put Mary’s diaper inside out this morning in the dark. NOW that can’t be good. Being that family isn’t so bad. Promise we won’t put jars up in 7-11’s and have a telethon. I see someone who loves their child(ren) more than life itself and I want to help. I can’t help Ike. I can help w/ the impersonal stuff like money and time. THAT I can do. Love your family? YOU got that covered. I wish you only the best and the warmest hugs.

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  10. I don’t know you, but I have read your book and just read a lot of your blog. I was covered in goosebumps by the time I finished reading. My heart goes out to you and your family. I will keep little Ike and your family in my prayers.

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  11. Kari,
    As others here have said, you don’t know me – I’m an Austin Mama who hasn’t been much of an Austin Mama lately, but I do want you to know that you and your family are in my thoughts and prayers and I’m sending you every positive vibe I can possibly get my mind around. I am sorry that you and your family are going through this and I hope beyond hope that you all reach the light at the end of the tunnel sooner rather than later. Much love to little Ike.

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  12. Kari,
    when Ed (my teenager) was in the ICU and they told me he may or may not live, my husband stumbled into the hospital after a full day’s work (at a brand new job where he dared not ask for time off) and an hour drive to the hospital, and we found our way up to the parents’ lounge, and after looking both ways, we stepped into the parents’ shower. And we made love in the parents’ shower. I highly recommend it.

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  13. Kari, I’m so glad the surgery went well. I have been thinking of all of your family constantly since I heard about this yesterday. Amy, that’s a pretty wild confession! You made my day.
    Hugs and love,
    Inez

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  14. You have so much on your plate now. Let people do for you whatever they/we can do.
    And I agree with Wen about backwards diapers– who cares? It brings to mind my husband who marched around the house with a clean pull-up on his head this morning, declaring himself Captain Poopyhead.
    Clearly, I digress. Much much love, mama.

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  15. it is clear to me from how you are processing this that you have the gift of transforming all of these seemingly unbearable experiences into strength and wisdom almost immediately. for that you are so blessed. people read books and take workshops to try to hone that skill and they still can’t do it most of the time. and you are mistaken about your power to deal being “finite” – at the risk of sounding like a cheap imitation of oprah, the source you are talking about is love – your love for your family and yourself and all the friends that are now giving that love back to you tenfold – and that is NOT finite. so just keep doing what you are doing and it really, really is going to be ok. xoxoxooxoxooxo!!!!!

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  16. You are so strong. Know that in this moment of fear and frailty that there are so many of us just praising your fight. You are amazing. Peace and love to Ike and the rest of you.

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