Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Hey ladies! :)

Posted by on Jan. 15, 2013 at 4:20 AM
  • 8 Replies

  I would just like to introduce myself.  I just got on CafeMoms, and so far love it! :)  I am a single mother of 3 year old twin girls.  One of my twins has a congenital heart condition called, Tetralogy of Falllet and a congenital eye condition called, Duane's Syndrome.  She has been through numerous surgeries such as catheter procedures since she was 2 weeks old, open heart surgery, bilateral eye surgery, and countless doctor appointments, echos, etc..  We have been through quite the journey, beginning when she was 5 days old (we live in AK) she was taken from me and sent to Seattle Children's hospital because Alaska didnt have the medical supplies to keep her alive nor preform the extensive procedures she needed.  Before anyone thinks or judges in the wrong aspect.. youd(as well as myself) think HOW AND WHY COULD A MOTHER OF A NEWBORN ALLOW HER CHILD BE TAKEN FROM HER?!?  RIGHT?  I thought that.. Until it was out of my hands and put into a life or death situation.  When my twins were born I had severe high blood pressure resulting in my inability to fly for hours, plus I had her twin that was completely healthy and she needed caring too, so as a single mother I had to do what I had to do to save our lives...  Oh how I wished I could be two people at once!  Thankfully, my loving parents are such fantastic people, as they came to me when I was about to give birth(we live on an island, I was sent to a bigger town, Anchorage, at 22 wks, to have my twins as I had a high risk pregnancy).  My father flew with my twin (Sydney) to Seattle, while I had to stay with the other twin(Aubrey).  My father and Sydney were in Seattle for a month, when she was FINALLY healthy enough to fly home, after 2 catheter procedures.  I can never explain in words how I felt when I got to see my baby after ONE FULL MONTH, the feeling was impecable! <3
  ANYWAYS...  Now, they are 3 years old and healthy!  Sydney has her heart and eye complications, but she has grown into the biggest, little FIGHTER I know, and THANK GOODNESS she is a healthy 3 year old, that has made me learn and experience how to advocate for one with special needs!  I thank them both for creating such a strong personality in me and teaching how to defend them! :)

by on Jan. 15, 2013 at 4:20 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-8):
by on Jan. 15, 2013 at 7:51 AM
Posted on the NEW CafeMom Mobile
by on Jan. 15, 2013 at 12:17 PM
1 mom liked this

Hi and welcome to the group!! I am so sorry you have been through so much with your baby but I can relate 100%. My DD has an IGG immune deficiency, and rare neurological spinal disorder (syringomyelia), hypermobility syndrome, undiagnosed stomach issues, asthma, eye issues (she has had eye surgery too) and non allergic rhinitis. Along with that she also has had anemia and torticollis.

It is so hard to have a baby who is constantly sick and ungoing treatments and test. My baby girl is my inspiration and the bravest person I know! It takes a strong person to raise a child with special needs. So glad you found us here mama!! There is a group for raising kids with special needs too, you should check it out. They offer great support.

by Gold Member on Jan. 16, 2013 at 1:05 PM


by Platinum Member on Jan. 16, 2013 at 4:04 PM

Welcome to the group!  I'm so glad you have such loving, supportive parents who were able to be there for you and for your daughter when you couldn't be with her.  :)

by on Jan. 16, 2013 at 4:27 PM

 Hi and welcome to the group.

You had such a good support system.  I don't think you lost your baby because she had to get some surgery done that couldn't be done where you lived.  You survived through it all and that's what makes you strong.  Now you can be advocator on so many levels.  Good for you!

by on Jan. 16, 2013 at 5:24 PM
Welcome!!! I'm so glad you found us!!
Posted on CafeMom Mobile
by on Jan. 16, 2013 at 6:04 PM
Welcome to the group. Its great that she is healthy enough to be a normal child now. I know it was hell, but worth all you had to go through.
Posted on CafeMom Mobile
by on Jan. 17, 2013 at 7:08 PM

RIGHT! :)  It was tough, but now I do now how to advocate and help others with children with issues as well!  Thank you all for welcomes :)

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)