Frustrating progress

Yes-- I typed the title correctly. Before explaining what I mean, I'll be clear: Madeleine is doing great and we're very excited by her surgery scheduled for next week. We just learned that they're increasing her feeds again which is yet another good sign. Right now, there really isn't a negative medical issue facing Madeleine. (Its weird to type that sentence.)

Despite all of the progress, Kirsten and I are both getting a little frustrated/tired/call it what you want with the whole process. We're not unhappy with anything/anyone at Children's and we feel like Madeleine is making tremendous progress. However, seeing how far she's come and seeing how close she is, we're starting to struggle with the following factors:

1) Bottle feeding: this is a short term concern as we know that she'll eventually figure this out. Still, its been a little over a week and we're not seeing much progress. The nurses and doctors are reluctant to push Madeleine too much as their primary goal right now is to see her gain weight and prepare for surgery next week. She can get all of her food via the feeding tube so they're not overly concerned right now with bottle feeding. At the same time, they've indicated all along that Madeleine won't be cleared to come home until she takes all of her food via bottle. Again, we fully expect her to take all of her feeds via bottle but we don't know how long this will take and it is frustrating.

2) We're tired of going to the hospital. Visiting the hospital to see our daughter isn't the way we envisioned being parents and its emotionally draining. We've received tremendous care and have built great relationships with the nurses, doctors, and other advocates at the hospital. Still, we're ready to get her home and start acting like parents.

3) Now that most of Madeleine's major health issues have been/will be addressed, we're starting to focus on the challenges inherent with having a child with Down Syndrome. The more we learn, the more we realize that, for the most part, being a good parent is synonymous with being a good parent for a child with Down's syndrome. At the same time, we'd be lying if we weren't concerned with our daughter's future physical appearance and it is difficult to accept that, to a certain extent, our daughter will have some level of mental retardation. While this is difficult, we're absolutely committed to our daughter's future success and, in many ways, we welcome the challenge of raising a child with special needs. I think right now, its just particularly difficult for us as its finally starting to settle in.

Those are the major factors. After typing them out, I'm hesitant to post as we don't want to be seen as whiinge and/or complaining. If anything, Kirsten and I feel extremely fortunate for all of the blessings we've experienced since Madeleine's birth. My goal in posting this was two-fold: to let you know how we're doing while also trying to sort out the different emotions affecting us. As I said in one of my first blog entries in March, we created this site as a way to provide updates to our supporters while also allowing us to freely express our emotions/concerns/etc. In the long run, we're confident in our ability to address each of the concerns listed above. In the short term, we're frustrated and typing this out helped clarify why.

Thanks-- Have a great day.

Kirsten and Brent