Tuesday, December 1, 2009

To tell or not to tell, that is the question of today.

Took Dylan for his 9 month check up today. I find it hard to sit in the waiting room of the Doctor's office, I dread anyone asking me how old he is. Do I tell the truth? Or, do I lie and say he is only 4 months to avoid the questions or comments? If I tell the truth most people then say "was he a preemie?" Or, my favorite "gosh he is so small, why?" Let me just say, I have never and will never walk up to a total stranger and ask why their baby is so small or why their baby isn't sitting up yet at 9 months or why their baby won't make eye contact all the time and smile on cue. Sometimes I find myself saying yes he was born early (total lie) or I say if you really want to know the truth he has a rare syndrome that causes him to have developmental delays and grow slowly. Then they either say "Oh" and turn away, or say "I'm sorry," and still turn away or change the subject. This usually makes me feel more uncomfortable, because then I feel like they think he is diseased or something. My favorite part of this morning was when the nurse brought us into the room and she never even asked me about his milestones, which were clearly on the assessment sheet for her to check off. She never asked how he was doing developmentally or how he was eating. It's like she saw the diagnosis on the top of his chart and thought it would be better to not say or ask anything in fear of hurting my feelings? Who knows. I am just so irritated by all of this stuff I have to deal with on a daily basis. I wish someone would just come up to me once and say "what a beautiful baby," that's it and then smile and walk away. Well I guess this is my pity party for the day. Just had to vent. I do want to share that since having Dylan I feel I have a greater since of compassion and empathy. It's funny but I have been a Labor and Delivery RN for over 9 years and worked in the NICU and I have seen and taken care of babies born with health problems, but never anything like this. Then it happens to me and my experiences have definitely given me a different perspective on life, I don't take things for granted anymore and I am thankful for every moment because life is too short.

By the way Dylan weighed in a 13lbs and is 25.5" long. Not a huge increase, just a little over a pound since his 6 month check up. It is frustrating to see because he has been taking 4-5, 6oz. bottles a day for the past 6-8 weeks. It was such a huge jump from his previous 3-4oz per feeding, so I was disappointed to say the least, I thought for sure he would of gained more. But on a happier note he was very excited to lay on the paper in the doctor's office, he was kicking and smiling so much. He always likes the way the paper feels and sounds, it's really cute, I have to hold him still just so they can listen to his heart and lungs. His Pediatrician did reassure me to not worry about his weight, the important thing is that he is gaining, no matter how small it is, and she thinks he is doing wonderful.


  1. Dylan has the most beautiful skin and eyes I've ever seen! I've seen him smile, it's precious.

    I'm sorry about your experience with the nurse. She should have asked. Every baby has milestones - their milestones are milestones - period.

    As for the public, people are naturally curious and it can come off as rude - and IS rude most of the time. You need a kind/quick/but jaw dropper kinda come back or just make some business cards with your blog address on it, specifically - this blog post! I'm sorry Kristi. You are the sweetest, kindest person I've ever met, so it makes me a little defensive to hear what you are going through. (-: Michele

  2. I read your blog and can relate all too well. Riley is almost 11 lbs at 9 months and 22 in. I always lie and say she was a premie. I hate doing it, but it is easier than explaining the whole story. People do not have the compassion for kids with disabilities. I hate when people apologize when they do find out Riley has a disabilities, because I'm not sorry. I am so proud of who Riley is and what she is doing in my life. I think Dylan is a gorgeous, or should I say handsome, baby! I think his weight gain is awesome. I think you are doing a great job as his mom and cheerleader.

  3. Hi Kristy- I'm sorry you have to go through all that. I felt bad when I read your blog. Dylan is a beautiful baby, no matter what. I'm sorrythat I haven't gotten to get to know him & spend more time with him.I love you, Aunt Joanne

  4. Kristy, I just went on your blog to see if you had a chance to post anything about Dylan's surgery. I was shocked and terrified as I read about his ordeal. Thank God you were holding him!
    I love Dylan very much and feel so blessed to be a part of his life. He is precious and beautiful and he brings me so much joy.


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