Tessie was diagnosed with "global developmental delay" around the age of 11 months. At the time, all of the therapists that were involved in the early intervention process along with her pediatrician had no idea how severe her disabilities really were and told me they thought she would improve with physical and occupational therapies.
Deep down I knew better (I still was in major denial but my gut knew what my heart and mind refused to believe) but we went into it full speed ahead.
By the age of two it was becoming obvious to everybody that her disabilities were more severe than they had thought and so we had to dive into the world of special needs equipment. And let me tell you, there is nothing more heart-wrenching than being forced to admit that your child is in need of this equipment because they are not progressing in their development. It is a post worthy of itself so I will suffice it to say it was one of the first and hardest steps that I took in accepting that we had a "special needs" child.
She was fitted for a special car seat that would fully support her, especially her head which she had trouble holding up. This seat was like a LazyBoy recliner. Huge and overstuffed but extremely comfortable and most importantly, safe.
By this point she had moved from a traditional stroller to a wheelchair type stroller that afforded her total body support because she was so weak she couldn't hold herself up. Also, part of her physical therapy included a standing frame (a medieval torture device where you strap your kid, like Christ on the cross, into a frame that forces them to stand).
My niece, who is six months older than Tess, absolutely loved all of her special equipment. She always wanted to be put in it and would get mad if The Toots was using it when she was at our house.
Because my niece was so young it was hard to explain to her why Tessie didn't run and play with her or talk to her. Why was it okay for Tessie to scream in the house but she got in trouble if she did? Why, at the age of four, did Tessie still get a "baby cup" (before Tessie's G-tube surgery)but she had to drink out of a big girl glass? And most importantly to her, why did Tessie have all these "cool" things to play with but she didn't (standing frames, wheelchairs, mouthing toys, etc)?
And the day that my niece saw Tessie's "real" wheelchair (Tess got fitted for a "real" wheelchair around the age of four) she was in awe. She ran her hands lovingly along the frame and down the armrest, gave a very heavy sigh and longingly said, "I wish I had a wheelchair!". Her mom and I, seeing the obvious irony in such a statement, just cracked up.
I said to my niece, "I know, Tessie is so lucky!". My niece nodded in total agreement. I assured her that she could "ride" in it anytime she came to my house but I could tell that she really wished for one for herself. It still cracks me up whenever I think about her saying that.
But with that innocent little statement my niece taught me a very valuable life lesson that has helped me time and time again in this journey with The Toots...it's all about perspective.