I recently I began to read a wonderful blog by one of our members. I wasn’t quite sure what to make of it first..The author has a great sense of humor and turned out to be a prolific writer…I get nervous when people start adding a lot of blog posts due to the massive amounts of spam this site gets but as I read more, the more I felt very lucky that I ran upon her blog and the more I want to read —
I guess I share that interesting sense of humor … Please enjoy her blog as I do …..
An Ordinary Life of an Extraordinary Girl ….. by Alex’s Mom
I finally did it — I hid the gross, disgusting, ugly ,worn-out, fake crocs that Alex has been wearing every day for 2 1/2 years. It took a lot of guts – but I am proud of myself (at least for now).
When my kids were little, I thought it was sort of cute if they wanted to wear the same pair of jeans or shirt for more than two days in a row. However, Alex is 16 and these dreadful blue shoes have got to go. She should not have even worn them for two weeks in a row.
Many people I know with down syndrome have flat, wide feet. I am not sure exactly why that is – but as a result Alex has a funny step and walks with her feet pointed outwards. As with everything in her life, Alex has learned to compensate, and walking or even running – as evidenced by the fact we are going to participate in track and field at the National Olympic Games – is not a problem for her….
Thanks so much for sharing Alex’s Mom!!!
Laura Suer
I checked out this blog and LOOOOOOVE it!
There is so much she touches upon that deals with my hopes and worries for my little girl.
Gloria Howell
Thanks so much for this site! So much encouragement here, and believe me, I need it.
Justin Jilg
I love your site…you encourage all of us also!
justin
Alex\'s Mom
Oh my gosh – thank you so much. I am loving sharing my story and reading others – This is a great site that Justin started. My next few entries will be sad, but I want to stay true to my mission to document a year in Alex’s life…please bear with me as we suffer a big loss in our lives
Barbara
Alex’s Moms blog was the first I read on this site. I am hooked!
teri
Hi,
My bother and his wife have just found out that their 1st baby has down syndrome.
They are devastated, I am very close to them, but can not find the right words to say to them.
My sister in law, wont talk to anyone not even her mother. my bother is distraught, saying the child is not right.
I am so sorry to suggest or indicate that this syndrome is ‘not right’. I truley just want to find the right words to tell them that it will be okay. The child will be beautiful but most importantly loved by all.
please advise
thankyou
teri
Justin Jilg
Hi Teri,
There isn’t a parent on this site that hasn’t a similar experience. When parents, family, and friends first discover their child will have Down syndrome it is sometimes a devastating experience. It simply takes time. All you can do is be there for your brother and sister-in-law and help them in their own time. I suggest you help them by educating yourself and preparing any information you can on local support groups and finding other parents that may be able to counsel them during this difficult period. The most important thing for you is to love the baby with all your heart and be sure that they know that just because he is different doesn’t mean that he is different to you. Feel free to have your family come back and visit or email if they need anything.
Justin
Alex\'s Mom
Teri, I hope this wire reaches you. You are doing the most important thing you can for you brother and sister-in-law. You are learning as much as you can, you are being supportive and loving. They must first go through their own grieving process for the baby they thought they would have, and accept the baby they will have. As you said their child will be beautiful and loved by the world – but they need to get to that point. In the interim being a loving and supportive sister is what they need.
As Justin said, everyone on this site has had the same experience. If you have time there are some beautiful stories here about that. I believe we are all better people for what we now have in our lives. Shout if you want some more information.