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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, November 1, 2012

It was not fine.

I was recently reading back over my posts from when Lauren was in the hospital. I certainly wasn't intentionally lying, but I was definitely not feelings so upbeat.

The way I personally deal with stress is overwhelming positivity. I think it's more trying to convince myself that everything is fine than trying to convince anyone else. It's my coping mechanism.

But really, I was extremely depressed. I remember being afraid to hold her because I was afraid to get "too attached". Yeah, like it was possible not to fall more and more in love with Lauren every day. I remember thinking I would kill myself if she died. When I was pregnant and I bought her coming home outfit I remember thinking, "I wonder if I'll have to bury her in this."

I wish I had blogged about that raw emotion. I think it would've helped even more than fooling myself into thinking I was fine.

I was not fine. I was not okay.

I was terrified, I was overwhelmed. I was devestated. At one point I wondered if it would be possible to just walk away from it all. What would happen if I left and just never came back?

Watching Lauren was like a ping pong match ever day, trying to find the right combination of heart medications and diuretics to keep her stable. Then the infection set in and I wondered if she'd ever really be okay. Some days she just seemed so sick. How could a baby ever come back from that? But she did.

The day of her surgery I handed over my not quite 7lb six week old daughter. I cried my heart out. Then, do you know what I felt? Nothing. I was absolutely numb. It was horrible. When they finally came and told us that she made it through surgery and would be on her way to the PCTU (pediatric cardiothoracic unit - a pediatric cardiac intensive care unit) I physically felt the stress leave my body. It was like my entire being sighed with relief. Maybe, just maybe, I would get to keep her. I felt myself finally coming back.

Then after surgery when her lung collapsed I felt those feelings resurface. When I went to visit her that day I checked in at the desk and the receptionist told me to wait, that Lauren's nurse would come see me first. When the nurse walked out and asked, "Are you Lauren's mom?", I felt the numbness start to come back, it was like my soul was leaving my body. She quickly explained what had happened and that she would be off the ventilator probably later that day or the next day. Thank God she was right. I don't think I was even human until April 9th, the day after Easter, when I finally got to take Lauren home.

Do you realize how guilty I felt? It was awful. I couldn't talk to anyone about it, I felt like nobody understood. In hindsight, I probably should've been seeing a therapist or a counselor. I felt like anyone I told would judge me for being depressed or not trusting that things would be okay.

  I don't feel quite so guilty anymore. I don't think there are words to describe what it's like to go through something like that. It was part of my journey. I know now that it was okay to feel that way. I don't think my family would've judged me.

I don't know why I'm even writing all of this. I just want it here for the record. I was not fine. I wish I would've known that was okay.


  1. Those emotions are felt by so many going through these same heart surgeries, getting the same diagnosis, yet so many do feel alone, and guilty. Thanks for sharing this. You never know who may be in your shoes and stumble upon this later, and know that they really aren't alone at all. I can't tell you how grateful I was reading through other heart surgery blogs before Max had his OHS over 3 yrs ago. My how time flies. It is such a relief to see how others made it through the rough times. So glad Lauren is doing so well!!

  2. Thank you! It's nice to get some validation that it really is okay to have feelings like that.

  3. I got very emotional reading this. My son is scheduled for OHS next month. This has been the single most helpful thing that I have read as I prepare for what is to come. I find myself already reassuring everyone around me that the upcoming surgery is going to be fine, is routine surgery now a days, a blessing for Ben, yada yada. All true, but really, I'm the most scared I have ever been in my entire life and I honestly wonder if I will have what it takes to make it through this for Ben, if I will be able to withstand the awful swells of emotions that I'm already feeling that I know are just going to get worse once we get there. You have no idea how much it helps to know that this is normal! Loved your response on baby center, but can not thank you enough for the link to your site. Please know that your honesty is a beautiful blessing to others!

  4. Stefanie, thank you so much! I really appreciate your comment. I am praying for you and Ben and your family. Lots of hugs!