The humility

Why is what other people think of us so important for many of us? I think I’m a pretty confident person but, if someone doesn’t like me, it affects me strongly. If I know I’m going to see someone I don’t like or interact with someone from my past, I try and look my best. I want to always appear as though I’ve moved on & I’m happier than even I could’ve imagined. I don’t think I’m alone in this mindset. Isn’t Facebook just one big high school reunion? So of course I’m going to put the best pictures on my page, write the best status’ about my children & cultivate the image that I am handling my life and my situation like a modern day Jackie O. But why? Is my son any healthier because he looks great in my profile picture? Is he spending less time in the hospital because I’m back in my pre-pregnancy clothes? Even that? Was that statement more about David or me?
Why is it so hard for me to be brutally honest & vulnerable? In truth, 2013 has been the worst year of my life. My marriage has been tested, I’ve checked out frequently, I’ve questioned my faith and there have been times when I’ve been jealous & angry about what I perceive others to have (gulp – that was even hard to type). But haven’t I perpetuated that by giving off the impression that I’m “handling it”? I have been so determined to be the Grace Kelly of Down syndrome that I haven’t allowed myself to show the cracks.
I’m still not ready to be completely transparent, but I think this is my attempt to let everyone know that the cracks are there. It’s not easy & there are many days when I’m in the hospital in sweats & my chin is breaking out in stress pimples & I’m not speaking to Jason because he didn’t unload the dishwasher. There are days when I snap at nurses & yell at Ella & get in fights with my mom. How does this all culminate in being a good mom to David? Sometimes it doesn’t. Sometimes I’m just barely hanging on & calling the nurse to check on him before I go to sleep is all I can muster.
I’m no Grace Kelly. But even on my bad days, I love my kids with a ferociousness I didn’t know I had in me. And I’ll keep working to get there, I may just have to change my role model. I should’ve known a girl from South Dakota is better suited for Daisy Duke than Jackie O 🙂

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The heartbreak

Is there anything worse than taking a child away from a mother? There’s no better way to describe it than to say I am heartbroken. I know the hospital is the best place for him right now but I feel as though my baby is being held hostage. I just want to hold him and snuggle him and be with him. I don’t want to have to get in my car & drive just to hug him. I want him to be with me, all the time, every day. My sweet boy was three months old yesterday and only 12 days of his life have been spent in our home.

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The PICU

Once you leave the NICU, you’re not allowed to come back. After you’ve been exposed to the ‘real world’, the NICU is off limits. In theory, this is wonderful. Who wants to go back there? It’s the best worst place to be. But then, you’re back in the ER & the doctor is telling you they’re going to re-admit your son & all of a sudden the NICU seems like heaven; like the only place you want to be if you can’t be home. But instead, your son is being taken to the PICU (pediatric ICU) and you don’t know anyone there & they don’t know your baby or your story and it feels as if the bad day just got a little sadder. And your standing in the hall while your son screams behind closed doors as they insert an IV in his bone because he’s too dehydrated to find a vein in his arm or head or neck. And you’re hugging your husband helplessly as you silently shed tears only to realize he’s quietly crying as well. And you try to smile & remain calm as a social worker stops by just to see ‘how things are going’ but you know he’s checking to see what kind of parents let their 3 month old get dehydrated. Then finally, your baby is asleep in his daddy’s arms as you wait for the next step on the journey. A step that leads where? A journey that ends how? Today it will end in a new room in the PICU and a quiet house 8 miles away.

The return

When Ella was a baby, people used to tell us we were the most laid back parents they had ever met. The fact that we were clueless combined with her overall health led to us never really being concerned by much. We’ve always been quicker to wait it out than to panic & act rashly.
David, as with many other things, is already changing the way we parent. I feel we’re a little more on edge, a little more frightened & quicker to panic when it comes to his health (rightly so given his history)
David has been home for 4 days. We’re still adjusting & making new routines. Today my mother in law & I took the kids to the pumpkin patch. It was a perfect Colorado day; a little chilly but by afternoon the sun was high & we were all a little warm. By evening, I though he felt a little warm. His temperature said 100.7, so we removed a layer, gave him a bath & tried again. It had only gone down to 100.4 so we decided to go to the ER. They took his temperature there & it was 103, so they began running labs. They tested his urine & blood and did an X-ray. Fortunately, it was determined he just had a mild virus, most likely contracted at the pediatrician on Thursday. We were sent home with pedialyte & instructions to give him Tylenol in 6 hours if he needed it.
When we were discharged on Wednesday I thought we were done. I knew we’d have follow up appointments, but I didn’t expect to be back so soon & so unexpectedly. I can already tell I’m going to constantly be on alert & vigilant about David’s health. And while I feel the same way about Ella, I don’t feel the same sense of panic when she gets a cold or runs a fever. I’ve said before I’m always waiting for the other show to drop with David & tonight’s visit reminded me that I can’t ever let my guard down. I can already see myself becoming that overprotective mother. I’m going to have to learn to walk the line between paranoid & advocate.

The homecoming

The day we’ve dreamed about & at times feared may never happen has arrived!! We are driving away from Rocky Mountain Hospital for Children with our son in the car! It’s surreal & just as beautiful as we hoped. Thank you doesn’t even begin to cover how grateful we are for kindness, love, support & compassion. We have so many new friends and our circle has become bigger. Stay tuned for great things to come!!!

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The awareness

October is National Down syndrome Awareness month.  The reality is that I don’t really know what that means.  I still haven’t had much experience with Down syndrome.  Our issues have been surgical and hospital related.  Yes, these are all symptoms of Down syndrome, but I can’t say that I know what being a parent of a child with Down syndrome really means yet.  I have filled out a ton of medical paperwork, have had numerous conversations with the Medicaid and Social Security offices and met with a developmental therapist but we haven’t been able to move forward and support our son the way we anticipated.  I don’t really feel like an expert on Down syndrome yet; but I fully intend on getting there!

What I can say about this month is that I’m excited about the awareness it promotes.  I am completely in love with my precious boy!  I don’t know what the future will look like for him, but then, I don’t know what the future will look like for Ella either.  This month I am aware of his spirit, his fighting nature and his sweet, gentle eyes.  I am aware (read: hopeful) that he’ll come home in October and this month will take on a new, special meaning for us.  He has already made us much more aware of our own ability to love and endure.  I am much more aware of acceptance and hope.  “I’m so glad I live in a world where there are Octobers.” – L.M. Montgomery, Anne of Green Gables

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