Wonder

I recently came across a song which has invaded my mind since reconnecting with it, Natalie Merchant's Wonder. I believe this song perfectly illustrates the message I wish to convey which is we are all created equally yet very differently. There can be no two who are alike and what defines one, certainly can't define another. The lyrics describe a child, one of such wonder and awe, she can only be explained as a creation of God. Especially in our age of technology, we feel everything must be explained by some sort of human rationale. We recently underwent the physical and occupational therapy evaluations for Harper at three months of age. They first noticed Harper's slightly cold and blue/grey hands and feet and asked about her heart health. I reassured them, she has no known heart defects but the poor circulation is evident. First mental 'medical' note I made to later address with her pediatrician. They quickly began manipulating Harper in ways I didn't know she, nor any other three month old, could move. In a matter of minutes, without intent, they can make you feel so inept as a mother. Sure this is what they do for a living, but I sat there wondering if it was even natural for any infant to be doing what they were expecting of her. There is a constant debate going on in my mind, while they are working with her, as to how much my intuition as a mother is worth in a situation such as this. I watch them prop her up, like a little Buddha, and initially think why I haven't done that with her but quickly switch to thinking should she be doing that? I suppose it is something I will battle, in my mind, for the majority of her life.

As each exercise was performed, they would score her based on her ability to accomplish each task. At the end, the numbers are tallied and a final evaluation was given. The occupational therapist had passed her on each task. The determination was made that Harper can complete each task however she doesn't sustain them for very long. For example, she was able to hold the rattle for 15+ seconds, but she wasn't showing any signs of extended play. She did not move the rattle and engage it any further than grasping the object. Overall, she did not qualified for any additional services based on that evaluation. The physical therapist performed her series of tests and found one which would qualify her for additional and more consistent therapy. Harper has developed some bad habits which need correcting. Harper tends to lead movement with her head/neck instead of initiating through her lower trunk with legs/hips thus allowing the rest of upper body to follow. We will continue her therapy through Easter Seals and begin with a once a week appointment, approximately one hour, then gradually increasing to twice a week some time after Christmas. Easter Seals has been such a valuable resource and we are grateful for the early intervention as it IS the key to success. Continuing therapy through Easter Seals will also provide consistency with her therapist which I believe to be crucial for not only Harper, but for the entire family to share that bond as well.

With the evaluations behind us, I asked a question which I thought not only to have a simple answer but to be quite logical as well. Harper has been showing a preference to her right side through play and even sucking her right thumb. I had wondered if this was any indication of the beginning signs of 'handedness.' The therapist asked if she had experienced any trauma during birth. I asked what constituted as trauma and according to their definition, yes, she had. She then went on to say she suspected there may have been some neurological trauma as well. This would present itself in a manner just as her preferring her right side. Wow, not the answer I was expecting nor prepared to hear. Second 'medical' mental note made. I had also mentioned we would be having her genetic testing done on January 6th, to which she replied her interest in learning the results of that as well. I asked what she may have meant or was looking for and she stated how Harper is unlike any other Down syndrome baby they have known. She is, in fact, too strong. In what capacity, I am unsure having left it at that as I had absorbed just about as much as I could in one day. After they left, I placed a call to Harper's pediatrician to relay the medical concerns which came from the evaluation. I was quickly reassured there is something to be said for a mother's intuition but routine EKGs to monitor her heart and a possible MRI to rule out any neurological damage were not out of the question either. Those can be further discussed at her four month check up, on December 1st.

Harper is exactly who Harper was designed to be. She is one of the wonders of God's own creation and as far as they can see, they can offer no explanation. I have no doubt this child will be able, this child will not suffer and this child will be gifted. With love, with patience and with faith, she'll make her way. Is Harper Mosaic? Is Harper on the far end of the Down syndrome spectrum? I can not answer those questions at this moment. What I can say is that I hope she will always be a challenge to every one's balance. We are too complacent in our thoughts and views of human life and rely solely on our human ability to understand and make sense of it all. To further take from Natalie Merchant, Harper will continue to confound and astound, but she is simply one of the wonder's of God's own creation and as far as they can see they can offer me no explanation.