Friday, July 29, 2011

Diagnosis Day Reflections

D-day is coming up in about a month. Diagnosis day anniversary. The first two years I let it slip by without notice, maybe I wasn't ready to notice or to relive those feelings, last year I acknowledged it somewhat, this year it's different. I feel like this year I'm actually going to celebrate diagnosis day.

So to help prepare for the D-day post I've thought of something interesting to do here on my blog. I'm going to one by one answer the many interesting questions I have been asked about my whole DS journey/experience/knowledge. I think it can be very helpful to other moms of children with DS, it can be enlightening to those who know nothing about DS and it can be emotionally healthy for me to do it. So onto question #1 (Oh feel free to leave questions in the comments if you want those answered as well!!) And feel free to answer the questions if you do have a child with DS.

This first question is inspired from Rachel Coleman's blog post Unanticipated Milestones which can be found here

What were the most unanticipated milestones having a child with DS?

There are quite a few of these unanticipated milestones, things that I never thought I would celebrate but I have just because they meant so much to me, Drew and Seth. One of them was when Seth was able to eat a 2oz bottle in one sitting.

Yeah I know what child doesn't scarf down a 2oz bottle? Well there was a time, 3 years ago, when Seth didn't/couldn't. The doctors were so afraid of him not gaining weight that we were ordered to feed him 2oz every 2 hours, round the clock. Seth would not latch on, would not wake up, would not suck, would not eat, and it killed me. It took 45 minutes for one feeding and that was usually only about 1oz. Eventually Seth's muscle tone got better, he grew stronger, and then one day, out of the blue it seems, he ate his whole bottle. Eventually a 2oz bottle grew to 4oz, then to 8oz and now he is drinking out of 10oz straw cups, downing his drink and asking for more.

I would like to think I would never forget about how hard it was, how hard we worked, but when things become easier you do forget. I forgot that food was a struggle at all with Seth. It was the biggest struggle teaching him to chew and having him eat solids and then table foods. I forgot. Perhaps my reward is that last night I was able to give Seth a slice of pizza, apple pieces and his milk and sit down and enjoy eating dinner with him, versus feeding him. It's a cool thing.

Another unanticipated milestone is sign language. When I was pregnant I did a lot of research about DS but not much on sign language. Sign language came into the picture a bit later, when Seth was about 6 months old. His speech therapist started using basic signs with him, so we backed it up and started teaching him more signs and it sort of escalated from there. At 13 months Seth signed his first word "more". It would be "more". My kid wants more of everything. From then on Seth realized that signs got him what he wanted, so he used them frequently.

The most important sign that I think Seth has ever used is the sign for "I love you". Seth would repeatedly reciprocate the sign if we signed to him but never did it unprompted. One night upon putting Seth to bed, he looked up at me, smiled, and signed "I love you". And I cried and smiled. And I let him stay up late that night because that's probably the reason he signed it in the first place. He's a charmer! Seth signs "I love you" all the time to me and other people unprompted. It's still so special to me though every time he does it. I see other parents take advantage of the fact that their children can say "I love you". Not me, not with my child. I cherish every word that comes out of his mouth or comes from his hands.


  1. This is great! I wish that we had a 'D" day...It makes me sad that on Russell's birthday, when I should be happy and celebrating him, I am also thinking it was the day we found out...The day I experienced the most heartache and fear and pain of my life...I hate that the memory and emotions of that day are mingled with Russell's birth, and there is nothing I can do to change it...Ah well, hopefully over time those feelings lessen...
    I have a question for you...In those first two years of Seth's life, when everything was still new and scary...Was there anything you would change...I mean is there anything you wish you hadn't worried about, or stressed over...Something you thought was a big deal back then, but now looking back you wish you hadn't obsessed about??

  2. I just want to add...Every single time I look at Seth's picture at the bottom of your blog, my heart just melts! He is truly adorable!!!

  3. Awesome question Jenny, in fact I think that's one that I wrote down for myself. I'm going to answer it tomorrow. Oh and I think your little man is so cute as well!! The pics on your blog are great!!