As much as I'm thrilled that Lillian is able to get the help she needs, it makes me so sad to know that she's being evaluated by a complete stranger tomorrow who will ultimately decide what kind of therapy she needs without even knowing a diagnosis.
I want her to start therapy. I want to help her. It just makes this all a reality that I haven't had to face for the almost three weeks that we've been home from the hospital. Those three weeks we haven't had to hear negative comments about her condition and we haven't had to talk about the troubles she'll face in the time ahead. We haven't had to do anything but love her and treat her like any other newborn baby. I really don't want that to change.
Even though we haven't been faced with doctors or therapists for the last three weeks, there's still a little voice inside me that questions her every movement. Are her movements normal? Is she holding her hands the right way? Should she be able to move her head more? Does she sleep too much? Am I expecting too much from her? Am I doing enough to stimulate her? Why doesn't she cry like other babies?
Part of me is still holding out that all of the doctors are wrong. They saw a baby that is calm and content and decided something was wrong with her and have been trying to diagnose her every move ever since, and along the way convinced us that something is wrong with our baby. I know that it's a crazy thought, but it's easier to be in denial about everything then have to deal with it.
I guess I should go back to taking things one day at a time. At least we know she will start getting the help she needs after this evaluation.
Sare, I know I have no idea what you're emotionally going through...but as a physical therapist, let me assure you that a diagnosis is not always a necessity prior to evaluation. Many times, therapists are routinely asked to evaluate children to assist in the diagnosing process. The first day isn't always easy for you as a parent, but try not to worry the whole time if your baby is responding the "right" way. Every baby is different, and although they do have milestones they have to reach, some are a little bit slower/faster than normal. Make sure to ask the therapist any questions you may have, but also mention the small tidbits of information that you think aren't important. Every piece of information they can learn about Lillian from you is more than they can figure out alone. Just know that my thoughts are with you!
ReplyDeleteDon't worry! Even if Lillian isn't a typical baby that doesn't mean she won't lead a typical life. The fact that you are getting such early intervention is something isn't as standard is giving her an amazing start.
ReplyDeleteNot to mention she has a fabulously dedicated and loving Mom and Dad. Try not to stress too much and I know you will do the best for her no matter what!
Thinking of you and hoping that the appointment goes well! I'm sure she will turn out to be so perfect! Especially to Mom & Dad! :)
ReplyDeleteI can't imagine how difficult this is for you Sare, but no matter what that person says tomorrow it won't change a thing on how much you love her. Just because she's not a typical baby doesn't mean she's not a perfect baby. She's beautiful and she has such a strong mother to act as a role model to her on whatever path she takes.
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