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He’s perfect, so why can’t I relax? April 8, 2013

April 8, 2013

I’m never not scared. I cry often. Thinking of babies who didn’t make it, seeing a soother from when we were in the hospital, tiny baby clothes, these things all make me break down. Oliver, in all his health, beauty and loveliness, makes me cry. He’s happy. He’s healthy. But I can’t help but add “for now” in my head. Reherniation, scoliosis, pneumonia, these are all big fears in my life. Every time he whimpers I get scared. When he coughs I spiral in to terror. If he sits funny I start worrying about metal rods. You see a happy healthy baby, I see my entire universe teetering on the edge of a disaster.

He is so wonderful, so sweet, so perfect, that I cry just thinking of what he had to go through. Why does he only get to have one lung? Will he be able to play at the park with his friends? His left nub is not growing, will this bend his spine so much that he feels deformed? What if he gets an infection and goes from being happy, healthy and normal to needing oxygen around the clock? I know I can’t let these fears consume me, so we go out. When we’re out it’s hard to think. I try to keep myself distracted all the time. But then I get tired, and so do the kids. We stay home to rest and I get overwhelmed. It’s not easy loving someone so much.

Tim was happy the other day because Oliver got a tooth, and that’s normal. He just wants Oliver to be normal. I put on my knowing voice and reminded him that wanting Ollie to be normal is like wanting Poppy to be a boy. He’s not normal, he’s special. But I was faking it. I hope he can feel normal too.

I know I should be enjoying how perfect things are, and a lot of the time I am. If things became less perfect I’d be sad I wasted this perfect time feeling anxious instead of enjoying it. But knowing I should do something and actually doing it are very different. I love him so much it scares me.

Sorry this is not my usual upbeat post, I am just trying to stay honest. Oliver is perfect. 18 lbs of constantly happy adorableness. He waves and claps and gives high fives and laughs hysterically when you spray him in the face. He sleeps and eats and puts up with me. He’s incredible. We are so lucky. Xo

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12 Comments
  1. Julie Wajcman permalink

    I love your honesty. I can not even begin to understand the sensitivity you are feeling to everything Oliver. It’s not easy and you are very strong. xo Julie

  2. Celia permalink

    Don’t be so hard on yourself, mama. It’s our job to worry. It’s part of motherhood. It’s unavoidable. Love your post, thank you for being so honest 🙂

  3. rita permalink

    Maybe if you worry about Poppy a bit more, there’ll be less time to worry about Oliver. It sounds facetious, but I don’t mean it like that. Celia is right that we all worry.

  4. tanyajb2002 permalink

    I am so glad you sent an update. It’s a roller coaster I’m sure but want you to know that things could be so much worse. You are very lucky mommy, enjoy it. You can’t say certain things will never happen or could never happen to Oliver, but if you have one thing above most ppl is faith and the ability to cope. Most ppl would be envious of that alone, the solid relationships and support you have around you. Oliver is gonna be the best he can be, he can’t help it with loving family and friends around. Life isn’t easy and you probably ‘what if’ yourself to death, but stop doing it. Choose your thoughts, at least try. All this being said, you DO have the right to have bad days, even sad thoughts. I too have them all the time…..I’m not lucky enough to have kids, (hint hint 😉 but I’m not silly enough to not know that you are an amazing mom to pretty amazing kids. I bet you do feel guilty at times too, but as Oliver grows up, I have a feeling your give back to others will be bigger than his illness. J Turn your frown upside down girl, you’ll be fine J Oliver looks amazing and totally normal. Lots of kids have circumstances that they have to deal with in life, but they’re so resistant, it’s almost normal to them. A friend’s newborn had cancer for the first 2 years of her life, she’s 8 now, so sweet and totally normal, except she goes to the Cancer Rally every year—nothing wrong with that!! XO

    ________________________________

  5. Val permalink

    A cheerful frame of mind, reinforced by relaxation… is the medicine that puts all ghosts of fear on the run. ~George Matthew Adams

  6. he is adorable.

  7. You know what? I was born with CDH, and yet knew very little about this birth defect up until recently. When I researched it, my emotions overcame me. 50% of infants born with this condition die?! I never knew that. Wow, I am a survivor. Then, as I Google-searched CDH Blogs back in January, the first two found were about children who had passed away. This struck a chord emotionally. And still does. 😉
    Your feelings, however, are from a mother’s perspective, and quite valid. Do not allow them to consume you, or else you’ll go insane. But embrace these feelings. Are you a reader? May I make a book recommendation? I just finished reading “Bloom” by Kelle Hampton. You do not need to have a sweet little girl with Down syndrome to enjoy it. See, Kelle also dealt with some serious worries and feelings that were based purely on information which she had read. This interfered with her happiness, with life. Well, anyway. Read it!! ;-D
    –Hugs!!–
    –Raelyn

  8. Mom of two permalink

    Your honesty can only be admired Alex. I hope you realize how special and inspiring you are, as a mother and as a person. You didn’t break down when many others would have. Since, as parents, we all worry about our kids, I can only imagine how strong you have to be all the time. So you are actually awesome! 🙂

  9. Gail Lawson permalink

    Thanks for you latest blog, & it certainly brought tears to my eyes. I can sure understand why Oliver is a constant worry for you, but then you see the adorable picture of him & he looks the picture of health, but you know differently. I always feel so relieved for you & the family that Oliver has such wonderful happy moments, & I sure have upbeat thoughts for you, but being the parents of Oliver is very different, & I can see why it is difficult for you to be totally relaxed. I love hearing about Oliver & Poppy, so never stop your blogs. Love Gail Lawson Date: Mon, 8 Apr 2013 17:07:10 +0000 To: gailawson@hotmail.com

  10. Belle Sandella permalink

    Alex,
    Thank you for yet another raw and real post that makes me feel human. Your honest reflections about Ollie Boy’s journey got me through 6 months of bedrest and a wicked PPD. Anxiety is a real bugger that robs us of our ability to live in the moment and enjoy life to its fullest – but kudos to you for having the guts to own it. Yes, you are so very lucky to have your boy alive and well (we all are) but having fear of all the what-if’s is the most rational response to all you’ve been through. It’s only been 9 months Sweets…it will get better. Just my humble opinion. Thanks for sharing your awesome authentic self with us.

  11. I’m sure you hear this a lot because I do, but you are a good mother if you fear for your children’s health and safety. But any CDH parent will agree with you that this is a different worry. We stayed in all flu season and only let select few into our home during that time and Jack still got seriously ill 4 times. How much more careful can we be?! But it’s part of this roller coaster.

    I had a day like this today, where all I could think about was why this had to happen to such a wonderful little child, and what’s next? Then I thought about him laying in his hospital isolette back in those NICU days. What a heartbreaking memory. But the thing that we have to remember is that these little survivors are tough. We should be proud moms because we have incredible children.

    These sometimes seemly unbalanced emotions have to be normal. They’re going through a physical healing process and we have to go through an emotional healing process. Right?

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