8 Months

The other day I was playing with Kai and I walked away from his crib to get his food ready.  He had settled into calmly sucking his fingers and blowing bubbles.  As I approached his crib again, he looked up and me and started waving his arms and legs as though he was excited to see me.  It both melted and broke my heart.  Melted, because it was such a normal baby thing and for the first time he showed a real reaction to my presence other than watching me and blowing bubbles.  It broke my heart for the same reason, especially since I haven't had that reaction since. 

Much has happened in the last month.  Friday marked his eighth month birthday.  We spent the morning at the ophthalmologists office, trying to save his eye.  We saw a different doctor (the doctor that has been following Kai's eye thus far is moving to Iowa in a month, so he and the new doctor will both be following Kai until that time), and she was not overly optimistic about being able to do much for Kai's eye.  In fact, her exact words were "I am not optimistic about Kai ever being able to see well from this eye."  She talked a lot about making sure his right eye stays infection free and healthy, and also about tissue grafts once the infection has cleared.  The problem with tissue grafts in infants and young children is that the grafts are often rejected by their body.

We took the news hard.  Somehow, we had been (and to some degree, still do) holding on to hope that the infection wasn't as bad as it originally looked.  Considering that it hasn't changed much since Tuesday, our hope is fading fast.  We are trying to stay positive.

After the doctor appointment, we took Kai to get his hair cut.  While he didn't enjoy the process at all, I am loving the new look!




When we got home we gave Kai a bath.  Zuri had run into her room to get something and when she came out she noticed Kai was not in his crib.  She went looking for Kai and kept running back to his crib to check if he was there yet.  She had to make sure he was all right before she would start playing again.  She is very protective of Kai--even his stuff.  If something is Kai's, she will make sure that it stays with him or that it gets put back where it should go.  Such a sweet girl; she loves her little brother.


Maria came to visit Friday afternoon and we got to spend some good time with her.  

Saturday, J stayed home with the kids and I went to his sister, Alisia's bridal shower.  When I got home he had done the dishes, swept and mopped the floors, vacuumed, and cleaned Zuri's room.  It was so nice to come home to a clean place!  He is so amazing.  I was talking with the nurse last night and we had somehow gotten onto the subject of dads.  She said that out of all the families that she has worked with, J is the most involved father.  She said it is so awesome to see the way we work together.

This coming week is filled with appointments.  Monday he goes to his pediatrician for his next RSV shot, and Tuesday he has his next eye appointment.  We also have OT on Wednesday and Hearing Help on Thursday.  My grandparents are coming in from Sacramento on the 19th and will be here for the weekend.  We missed seeing them in November and we are looking forward to spending some time with them.

J's aunt gave us a book called One Tattered Angel, by Blaine M. Yorgason.  It is the true story about a girl named Charity who was born without a brain.  Even though the book takes place over twenty years ago, and I am not even half way through, I have seen many parallels between Charity and Kai.  They both survived past birth despite the odds; the prognosis is an early death--most likely from pnuemonia; they both had hydrocephalus.  They even share a common doctor (imagine my shock when I saw that!).

Charity's story comes from a family which had been preparing itself for years for her arrival, and they adopted her knowing her condition.  In a sense the difficulties we had with Zuri helped to prepare us for Kai, and in another sense we were completely blind-sighted.  Knowing what I know about the difficulties with a special needs child, I don't know that I would ever willingly adopt one.  It definitely takes special people to do so.

As with almost everything, the rewards of raising a special needs child are just as great (if not greater) as the hardships.  There is a love and a sweetness that comes from such a special spirit, and you really feel as though a touch of heaven has blessed your home.  You also become part of a community.  Parents with special needs children reach out to each other and help each other in ways I would never have imagined.  Maybe because of the selflessness that it takes to raise these little ones, but there is a kindness and a feeling of acceptance and love that is just not found elsewhere.