Learning My Weaknesses

SO it has been a total of two months and Steph is finally coming home. We put in lots of hours in the hospitals neonatal center teaching her how to suck on a bottle and we have now completed the task so she can come home! The 1,000 small holes in the heart chamber closed within the first 24 hours and her ASD which is the size of a 50 cent piece does not require surgery at this time. The doctors have set an appointment for all three of us to do a genetic study, along with follow up at the cardiologist. The social worker has set up a schedule for Steph to be seen at Currative Rehap for OT, Pt, and speech three times a week. You ask why speech? Well there is lot to learn from a child who has no idea how to move those muscles in her mouth. Let me tell you that the PT and OT are a breeze compared to speech. My heart sank watching her struggle to drink a bottle that as a mother you naturally expect your child to suckle. She would start to choke on the tiniest bit too much. Even the therapists taking her from my arms for a half hour of Pt and then Ot wasn't to bad but after a few months of that I began to ask why I couldn't go in with her and at least observe what they where doing. I tried to tell them that I could follow up with the exercises at home but to no avail. More on that later.
Now that I am living in the South I am so grateful for being able to raise Steph in Wisconsin. There was so much more available to her.
The heartaches that go along with watching your child struggle with things that seem to come so easy for others is enormous. I don't wish them on anyone. I don't want anyone's pity, I just want people to understand that your life is now consumed with your child and not to expect things to be the same as before. Especially if you have other children in the home, it would be so nice if someone paid a little more attention to them. While I was busy with Steph my family had to take a back seat. Don't get me wrong, I had many wonderful friends who had children and I was blessed that they were there at times for me and my family. It's just that I needed to factor in this element for others to understand that it is not just mom and baby that this life affects.
I will not mention the factor money played in our lives as it is a problem at times for everyone, but at some point I will speak on the subject of Social Security Disability.
So life went on in our family as does it now. You could say we faced whatever life dealt to us on a daily basis with love in our hearts, thanks to Stephanie!
Hugs, until the morrow.