How Far Is the Journey From Here to a Star

The day Eli was born, we parked in the hospital parking lot and I staggered towards the front door until someone ran out with a wheelchair and forty five minutes later, there he was.  Gray and noodley, my little spider monkey.

It all happened so fast.

I have said before that I didn’t have that wave of love you read about, it didn’t happen like that for me.  I was in shock from exhaustion and pain. I remember the first thoughts, as they slung him high up in the room, my son.  I remember thinking “oh, that’s the wrong one!” and then I remember thinking “Oh, they really are going to put him right on my stomach!” and then I remember nothing.

Of course I was happy. Of course I loved my son. But waves of adoration weren’t crashing on my beach, if you get what I’m saying.

And then we came home and nursed and weighed and didn’t sleep and I felt like a zombie, walking around outside my body, watching someone else live my life.  I felt a fierce protectiveness, and I loved my naked little mole rat, could sit and watch his face for hours, it felt like, but I still didn’t feel that mountain of love, so high, that you read about, that you wonder about ahead of time.

And then he grew and started to sit up and then crawl and then walk and then babble and then talk and then point and then to say mama and to pat me on the back the way I’d been patting him on the back for going on nineteen months, and there is no other way to say it.  One moment I was me, protective and loving and normal.  And the next minute, I was a goner.   Totally and completely butt crazy over the moon in love.

This child, this child of mine.  He is my universe, my light, my day.  He is the love of my life. I cannot begin to tell you the enormity of it.  Sometimes I find myself shaking, standing, in the middle of the day, shaking, from how much I love this child of mine, my tiny tiny Mini Me.

His long eyelashes, he got from me.  The way he glances down and studies whatever he holds in hands, with his lips slightly apart, and a concerned look on his face, he got that from me.  The way his eyes squeeze shut when he laughs, he got from me.  He fears change and strangers and he loves to cuddle and he hates being cold and he doesn’t like to sleep.  He got all of that from me.

He isn’t growing.  Something is wrong with him, and there is just no worse feeling than I have ever had in this life. I want to rewind things. I want to not be in this world where there is something wrong with my child. I want the life I ordered, the ordinary life where my children have simple problems that are simple to fix, broken arms and scraped up knees, and never anything worse. I want to never again hold my child down while blood is drawn from him, painstakingly slow, and to wonder, is this the first step in a long road? Will I look back on this and think “How little you knew.  How small that was.”

He might have celiac disease, and if he does, he got that from me.  He might have cystic fibrosis, and if he does, he got that from me.

There are no words. No words for how that makes me feel.

I am going on with my day. I am trying to focus on the positive. He gained five ounces! He probably doesn’t have cystic fibrosis!  His father doesn’t carry the gene! He hardly ever gets sick! They diagnose Failure To Thrive all the time! Lots of other kids are way sicker than he is! Most people have it worse and handle it better! We’ll find out the results of the blood tests soon!

But it’s so hard. My hands don’t stop shaking. I can’t stop holding my son and looking at those long eyelashes and trying not to cry.

I don’t know what’s wrong with me. This is just so hard and I just feel so ill equipped to put a happy face on it and pretend that it’s no! big! deal! when something is wrong with my child, this creature I love more than anything on earth, and I don’t know what it is.

So for today, here, in my safe place, I am not putting on the happy face.  I am telling you all that I am scared, and overwhelmed, and sick to my stomach with worry, and that I am not sure I’m going to make it, today, and I don’t know how to live with this mountain of love, this overwhelming ocean of love, in half of my heart, and this mountain of fear in the other half, the knowledge that something could be wrong with my child, and if there is, it came from me.

It’s too much, sometimes. Just too much.

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28 Responses

  1. I know that saying “don’t worry” is completely useless – how can you not worry? And how can my saying not to worry change anything? It won’t.

    You’re a brave woman. He’s lucky to have you as a mom.

  2. I don’t know what to say…except I am sending so many good thoughts and over-the-internet hugs your way.

  3. I don’t know what to say that wouldn’t be pat or useless, but I’m sorry you’re going through this and I’m sending all the good vibes I can your way.

  4. I’m so sorry and I’m sending so many hugs and prayers your way (for you, Mr. E, and for Eli). I don’t know what else to say that won’t sound trite, but please know that I’m thinking of you from my little corner of the world.

  5. No matter what he did or didn’t get from you, it’s not your fault. You are both doing the best you can with what you have been dealt, which is all that can be expected of you. Whatever does turn out to be the problem (and it does sound like Celiac is the most likely suspect), you will deal with it, because you are The Mom, and that is what Moms do.

  6. I know what’s wrong with you: nothing. There’d be something wrong with you if you WEREN’T worried and unhappy about this. There is nothing to do but wait now, and find out.

  7. Oh man. Of course you are scared and overwhelmed and worried. I would be too.

    It’s true, though, he’s lucky to have you as a mom.

    Thinking of you today.

  8. I wish I had magic! helpful! words of comfort. But I don’t. Except to say I’m thinking of you, and your whole family.

    (it took me a while to fall for my kid(s) too, and that’s one of the great secrets no one ever talks about. So thanks for putting that out there.)

  9. He’s gotten a lot of his great qualities from you. Remember that he is here to bless your life and open your eyes to a whole new world.

    One of my personal mantras is “Tomorrow Will Be Better!” It’s a nice thing to repeat to myself when my world seems to be swirling down the proverbial toilet.

    You will all be in our prayers. We wish you the best of luck!

    hearts,
    Maggie

  10. My dear sweet friend, please try to be gentle with yourself. I wish you some peace in the knowledge that you are a great mom and I am sending lots of love and energy your way while you await news. You are an amazing woman, wife, mother and friend.

  11. Take as many deep breaths as you can get honey. I just took one for you. When the sprog was young he was sick and we spent many days and nights in the hospital. I spent countless hours pouring over mystery diagnoses and symptoms trying to ascertain which of them might actually be accurate. He’s had diseases that people never heard of, that DOCTORS never heard of… and through it all, I felt like it was my fault. I gave him those weak lungs, I gave him my allergies, my twisted system. His father is never sick. His father….well his father is lots of things but his father faints at a drawing of a needle (which is essentially a line on a piece of paper) and couldn’t be there for half of his procedures. Whatever I “gave” him, I was holding him up through it all and I figure that is worth something.

  12. hell to the yes, mama.

    it’s WAAAAAAY too much LOTS of the time – even when there’s nothing wrong with them! it’s absolutely unable to be contained or controlled and that’s okay.

    all that to say, there’s NOTHING wrong with you.

    he’s your baby – give yourself permission to worry and cry and hold him as much as you want but try to stay afloat, just enough to breathe. you don’t have to swim anywhere, just tread tread tread and keep your head up above the water until the test results come in.

    happy faces are overrated anyway.

    also, i know this reads as new agey but…consider the power of creative visualization. it’s kind of amazing how positive thinking can actually work.

  13. You brought tears to my eyes with this post, before I even knew it was going to have sad ending! There is nothing wrong with you – you MUST worry about your child, it’s part of your job. Hold him and love him and squeeze him as much as he will let you. Let him make you laugh and smile at the cute things he does. And then after he’s in bed, trust that you can lean on your husband and fall apart all over the place if you need to. It’s ok to feel what you’re feeling, and trying to escape it isn’t going to make it any better.

    I’ll be thinking positive thoughts for you guys…

  14. I so know what you are going through, and it damn well sucks.

    Even in his 19-month-old brain, he knows you will do everything you can to keep him safe. Hold him tight, and wait it out. You’ll have answers soon. I’ll be thinking about you.

  15. There is nothing I can say to make you feel better, but I had to leave a comment just to show that there are a ton of us out here in internetland that have you in our thoughts. It may be a short path, or it may be a long road, but at least you’ve started the journey… total cheese, but totally true. Eli’s lucky to have you! You guys are strangers, but you’re in my thoughts! ((( )))

  16. I’m out here too, thinking of you .

  17. All the huggies in the world to you.

  18. I’m crying for you both. I wish I lived closer.

    You’re allowed to be terrified and angry and to feel ill-equipped. You’re allowed to feel whatever you feel. You’re his mother. Nothing you do/feel is wrong.

    And I understand that, to an extent, while waiting for our tests on Tuesday. Yesterday I thought to myself, “Give me cancer. Let that be it. Just let him be OK.” And I thought, wow. So this is what being a mother is like. It was the first time this whole thing has really felt real.

  19. It is, without a doubt, the most overwhelming feeling in the entire world. Loving a child with every part of you and reconciling that with the reality that you can’t protect them from everything. I struggle with this a lot. You describe the most amazing and terrifying relationship that exists so perfectly. I don’t have any words to say that might make you worry less or punish yourself less. It wouldn’t mean much to say that everything will be fine. Because you are not okay if he is not okay. So until you know he is, you simply can’t be. What I will say is the love he will feel when dealing whatever it is, whatever is keeping him a bit small, the love he will see in your eyes every day of that journey, he will get that from you. That love, that love that noone else in the entire world could give him, it comes from you.

  20. I think I understand so much better what it’s like to be a mom thanks to your words. I’m still not sure if I’m ready for that terrifying journey, but your desciption of unconditional love makes it sound so rewarding. I’m so sorry for what you are going through. I hope you figure this all out, but I think he understands that you will be with him every step of the way.

  21. Hugs

  22. I had the same kind of epiphany recently. I felt much the same after giving birth: Where is the Overwhelming Crazy Love? I suffered with PPD and felt like the worst person in the world, incapable of loving my kid the way I was supposed to love him; the way everyone else seemed to love their children.

    But just tonight, even, I was holding Asher and I looked at Dave and said, “Do you think it’s really true that you love the second one the same?” because it doesn’t feel possible, sometimes. It feels like every ounce of energy and love goes straight into my boy, and that I don’t have anything left for anyone else. I love him that much.

    I’m thinking of you, and hoping for you, but also so very happy for you and Eli, because it’s obvious that you’re a wonderful wonderful mother, and he is so so lucky to have you.

  23. Being a parent is so hard, especially when all we want to do is shield out kids from the bad things. You are doing a great job and he’s such a lucky kid to have you as a momma.

    I’ve been thinking a lot about you guys lately. Please know you are not alone in the way you feel. I remember feeling like you and it’s ok to put your brave face on the shelf for a while.

    Hugs to you and Eli…

  24. I’m not sure if this was said (haven’t read the comments) but I would take your son to an allergist — a really good one. When I was about a year old, I stopped gaining weight and could not keep anything down. Several doctors thought I had some really exotic disease, but it turns out it was allergies. (Previous doctors had tested for them, but I was too young for the tests to give accurate results.) The allergist had my mother pare down my diet to only BRAT — bananas, rice, apple sauce, and toast, and slowly reintroduce things to determine what was causing the problems. They identified that I was allergic to wheat and all wheat products (including bread) and to all dairy.

    I have no idea if this is a possibility with your son, but I just wanted to share my story — on the off chance it could be allergies.

    I will pray for you!

  25. Oh, I so hope everything works out. I will be thinking of you all.

  26. You don’t know me – I just quietly “lurk” here from time to time. Definitely look into the allergy thing. My son has severe dairy allergies, and was allergic to soy the first six years of his life. It took a year to find that out. Even if it’s not allergies, try to hold on to the fact that there are always numerous possibilities and they’re not necessarily all bad. Some will make things different, but different doesn’t have to mean bad.

    I’ll continue to pray for you both.

    By the way, your words about your son are beautiful. If he has any of those things you mentioned, it is not your fault. But you CAN take credit for the other, beautiful things he is/he has, and the love with which you’ve obviously raised him so far!

  27. I offer a simple cyber (((HUG))) for support!

  28. Beautiful and honest post about your love for your son. I’m praying that everything will be okay for Eli.

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