Sunday, July 18, 2010


Singing along to her Sunday School CD.....and dancing, of course. (-:

I lay in bed next to my little baby early this morning- very normal scene. She has been sleeping in our room of late because it is so hot out and we have air conditioning in our room only. The only problem is, around 6, she gets hungry and cold so we bring her to bed with us for an hour or two while we feed her her morning bottle/medicine. This morning as I cuddled next to her, I couldn't help but notice. How many mothers cuddling with their babies face the risk of strangulation? A cord comes from their Addison's nasal cannula, runs tauntly across my body through our room, through the hallway, through the living room- stopping in the DR. The source of Addison's oxygen. Sometimes I get so used to the oxygen that I almost forget it is there. Other time, it stares me in the face and mocks me- "I am never going away" it says.

Last night at the shower, I met some new, very nice people. When one of the girls said that she was a respiratory therapist, I tried to strike up a conversation because I feel like I know more about respiratory therapy than most people. I said that my almost 5 month old daughter was on oxygen. To me that is just normal conversation. Immediately the questions started, not just from her.
"Was she a preemie?" no. she was a full term baby
"Why is she on oxygen?" pulmonary hypertension
"Does she have to be on oxygen all of the time" yes, but ever since her heart surgery, we can take her off of it for several hours at a time
"How long will she have to be on oxygen?" at least until november
"Is she still in the hospital" no we have her set up at home with everything she needs

With each question, the looks of pity grew. I felt like everyone who didn't already know me and the journey that we have been through was just feeling so sorry for me. I couldn't bring myself to say that my daughter had Down Syndrome because I could only imagine how the looks of pity would then increase. Pulmonary hypertension is an issue that you can "work through". DS is something that is a part of her- something that is never going away.

It is weird that having a baby connected to oxygen for almost 24 hours a day has become my new normal. I just don't think about it anymore. I love my daughter more than words can express, and I feel like any other mom. I guess I shouldn't be sensitive that people would feel sorry for me when they first meet me, but to me that is so wrong. I have the most amazing daughter in the world who just happens to be on oxygen. What's the big deal? I guess that if you haven't been through something similar, you would assume any deviation from "normal" deserves your pity (even if it is just a look you give), but the truth is- NOBODY WANTS YOU TO FEEL SORRY FOR THEM! God has blessed all of us differently, but the key word is -blessed. I feel so incredibly blessed to have been given Addison. She is the best thing that has ever happened to me.

Those of you who maybe know other parents who have been blessed with a child that isn't stereotypical normal maybe sometimes struggle with what to say to them. (I know some of my friends have struggled with what to say to me sometimes) Honestly, you should be excited and happy for them. Is it going to be hard at times- yes. But they are going to experience many wonderful things as a parent that you never will get to because of all of the extra steps that they have to take to achieve things that you may take for granted. Exhibit A. I bet that most of you have taken for granted the fact that your child can eat orally. Well, when Addison was born, we couldn't feed her orally because of all of her other health issues. This is why they put in a g-tube and then a Mic-Key button so that she could still get proper nutrition. I had to teach my baby how to suck from a bottle. I sat next to her crib in the NICU day in, day out, for 5 weeks, so that I could be there when she woke up and we could practice sucking on her pacifer. It has been a long road, but she now eats amazingly by mouth. I revel in watching her suck away on her bottle, making grunting noises of approval as she downs another one. The joy I feel every time I watch her eat- never taking this ability for granted- equals the joy I feel this week as she now gets her Mic-Key button removed as her Pediatrician has declared that Addison no longer needs it. To see my 5 month old accomplish something so big is amazing! I am so extremely proud of her, and I wouldn't trade this small journey for anything. Yes, it is one small part of the whole journey of her life, but to me, the part represents the whole.

Moral of this long, complicated story(-: Don't feel sorry for those who are down a different path than "normal". If you stopped to think about it for just a minute, you might realize that there is a reason why they are down that path and that maybe in some respects, dare I say it, it is a more rewarding path as everything achieved requires more work- therefore, more reward and a greater appreciation for life.


  1. Wow, congrats on getting the Mic-Key removed this week. I know that is a huge step!

  2. This post is great. You have such a way with words! And I loved your comment, "But they are going to experience many wonderful things as a parent that you never will get to because of all of the extra steps that they have to take to achieve things that you may take for granted." You are so blessed. Not only because you have your sweet Addison, but because you possess a real joy in struggles, and thankfulness for all God achieves in you. I love reading your posts!!

  3. YAY ADDISON! Get that Mic-key outta there!

    Deanna, WONDERFUL perspective. I love hearing you Mama Bear stuff like this. You're 110% right, although you're never going to catch me admitting that I take things for granted with my kiddos. ;) It's true, but I'm not going to admit it.

  4. Beautifuly said! I feel so many of the things you have written here. Our kids are such blessings and no one needs to feel sorry for us or feel uncomfortable around us or our babies. And no we never take a single step or achievment for granted, every little thing our babies struggle to learn is so exciting because they do work a little harder than other babies.
    Great post!

  5. Addison is beautiful! Love the happy that she loves music as much as her mommy does. ;-)

  6. Your blog has been so helpful for me in understanding what it's like for moms with special needs children. I have heard other times of how deep their love is for those children, who require so much effort and attention.

    I think much of the pitying reaction you get from people with "normal" babies is one of fear and lack of experience. "I can't imagine how hard it would be/what I would do if my baby. . ." When you found out that Addison had DS, you had a hard time processing it, probably for the same reasons. All we see of other people's children is the external differences; none of us really knows all of the work that goes into someone else's child or all of the unique pleasure that is derived from them.

    I think if you went back in your own experience even a year, you might have responded in the same way when faced with special needs children. Please try to understand that people with no experience in this area just don't . . . have experience and usually aren't sure what to think or say. It helps us a lot to read your thoughts here--thanks for being so open.


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