So, yesterday I was at the pool and a very pregnant mom was staring at me with PJ and then her four year old finally came up to see the baby.  He was very playful and she could obviously tell PJ had Ds.  We began talking and I told her PJ’s story.  I got the feeling that she was thinking there was a possibility that her child could have Down syndrome.  Usually pregnant women who see Pj and can tell avoid us like the plague.  It’s as if they are scared they will “catch” Down syndrome.  I was very surprised this woman didn’t seem to feel that way and it made me feel pretty happy that a stranger could see that PJ was just another adorable baby and not just a syndrome.

I’ve kind of had a rough summer dealing with Down syndrome.  Please know that it’s not because I have any problem at all with it.  I look at my baby and only see PJ.  Our family celebrates every little accomplishment he makes.  And I usually don’t even think about the things that a typical baby should be doing at this age.  Until I do.  Until he is side by side with another baby who is far more advanced that he is.  This usually doesn’t bother me unless the baby is half his age and therefore it’s glaringly obvious.  So, what is PJ doing these days?  Well, he has about 4 words and about 7 signs. (Yes, he is learning sign language.)  We have two baby signing time videos and we watch one everyday.  Sometimes it’s on just while he’s playing on the floor.  He still isn’t crawling and isn’t able to get to a sitting position when lying down without assistance.  But, he rolls all over the place and often finds himself under the coffee table.  He is playing with his toys purposefully and doesn’t just bang them around anymore.  We are still working on him feeding himself but he is eating a variety of table foods!!!

I think what is the hardest for me is when very well meaning people make suggestions to me based upon what a typical child should or should not be doing at this age.  (PJ is now 15 months.)  I know that PJ will meet all  of his milestones.  But he will do it in his own time frame.  Patience is the key for me now.  Patience for my baby, patience for all my children, and patience for people who think they know what’s best and who hurt my feelings unintentionally.

I guess there really is a lack of understanding about Down syndrome.  I think our family might be walking in the Down syndrome Awareness Walk at the zoo this year.  I certainly don’t have the patience to educate everyone out there.  At least there are organizations who strive to do so.

I know this post wasn’t very uplifting, sorry.  But here are some cute pictures to counteract my bummer mood.

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5 Comments (+add yours?)

  1. Megan McComrick
    Aug 08, 2012 @ 19:49:06

    Dear Lisa- no bummer mood…sometimes the path we are put on just feels longer and harder then on other days. It’s Cardinal football time here, never does a season remind me more of the differences between my 12 year old and all the other 12 year old boys getting fitted for jerseys and pads etc.. I always feel a lump in my throat, it reminds me of the path I am on and how it differs from the one I expected…and that’s hard forever I think. We accept, we help, we learn, we grow and most of the times we are all just regular run of the mill families, but then there is an event, a question, something that reminds us that we aren’t like everyone else, and most days it’s okay that we’re not and sometimes it just makes the heart ache a little. He’s adorable. He’ll do everything he’s suppose to do because he has you, Dave, Alex, Tommy, Joe and Ben to help him along.

    The purpose of your blog is to enlighten all of us as you journey, inform us so we can cheer and support you. PJ won the lottery when he got all of you. Tomorrow is another day…

    Reply

    • lisa
      Aug 09, 2012 @ 14:49:54

      Thanks Megan. I know you know how I am feeling. I’m sorry. I forget how what you must feel during football season. I’ve read people who have
      said that if they could take Down syndrome away from their kids they wouldn’t because it’s part of who their child is. I am not quite there yet.
      I still think that I would do anything to make my child’s life easier. (Not better, just easier.) You’ve been a great source of support for me
      and I truly thank you for that. You are a value added person!

      Reply

  2. Tammy Fricker
    Aug 09, 2012 @ 15:51:12

    You are both value added people! I love how you can speak so well from the heart. Megan could not have said it better …. God bless you both, your families sure are for having you at the helm!

    Reply

  3. megan
    Aug 10, 2012 @ 09:22:47

    Tammy thank you! Lisa- I was at a national hemophilia meeting and some moms were saying that they would never take away their sons condition because of all the connections etc…. I was sitting there thinking “Are you kidding me? If there was an out on this condition I would trample over all of you to get my boys out of it!!!!!!” It is part of the journey- who would ever wish for anything but a completely healthy child???? I love the pictures from the zoo- they are all so darling and so loving. Happy Summer as it wraps up Lisa~

    Reply

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