Come Join Our Club

Good morning. It is 1:42 am. We have a new nurse tonight, the fourth new nurse this week. We switched nursing companies last Friday, so now we are on the quest for the right nurses for Ivey. Our nurse tonight got me out of bed just a little bit ago and now I can not sleep. My mind is racing back through the events of the day - and other days - while I listen to the nurse. She seems very sweet. And praise Jesus, she is not afraid to wake us up to ask a question when she is uncertain.

Due to a glitch last week, the new button that was only 2 weeks and 6 days old had to be replaced. They, the radiologist and GI doctor said originally to have it changed once a year. Ivey was at Scottish Rite at 8:00 am in the intermedial radiology for the exchange this morning - I guess that would be yesterday now. Ivey has gotten to know Amy, the radiologist, very well over the course of this G-J tube. To exchange the tube, Amy has to literally strap Ivey to a table. To say the least, no one was excited to exchange the button today.

Ivey's original appointment for today was to see her craniofacial surgeon to follow up with the palate surgery. We were at his office by 10:00 am. He said her palate looks wonderful. It is healing as it should. Ivey also has her first official tooth that has come in on top. It looks fine. This one is a keeper.

I also had the surgeon look at Ivey's right eye. If you have seen Ivey, you know that it tends to look at little 'more open' than her left eye. Ivey’s left eye has incredibly beautiful long eyelashes. Her right eye does also; however, they tend to curl under the socket of her eye along with the eye lid. He will do a little procedure on her sometime in the beginning of April to 'flip' (for lack of a better word at 2:01 am now) the lid back outward. I will know more tomorrow.

Today at Scottish Rite, like most days that Ivey is there, a since of belonging exists. When we are there, her issues seem small. Unfortunately, there is the feeling of 'it could always be worse'. Ivey can stroll through the halls and no one seems to notice her differences or if they do, they smile, ask questions, and then move along. Most people there have their own set of issues to worry about. Scottish Rite just has a lot of special needs children hanging around, special needs parents too. It is like our own little club.

I did not know what a craniofacial surgeon was until Ivey. Honestly, I had never heard of a craniofacial surgeon. Once Ivey was released from the NICU, I quickly found out. I'll share a short story with you. Matt and I celebrated our anniversary way back in June. He took us to Barnsley Gardens for a night. We were eating dinner - alone - for the first time - our first night away - we decided to try to talk about other things than just our children. Then from the table beside us we both hear the word craniofacial surgeon. We just looked at each other, both trying to hear what was being said. Who ever talks about craniofacial surgeons, especially when you are trying desperately not to? Three loud people sitting next to us, that is who. One was explaining her father was a craniofacial surgeon. The other two asked exactly what that means. The girls words exactly - I will never forget them, "He takes deformed kids and tries to make them look normal." Matt and I just smiled at each other and nodded.

Welcome to our club.

Today as I was sitting in Ivey's craniofacial surgeon's office waiting to get her procedure scheduled, I have sat in this office several times before and always do and think the same thing, and I looked around at the plaques on the walls. This time I noticed one I had not paid much attention to before. It had a picture of four severely deformed children. It thanked him for helping them. We thank him.

My friend S. was with us today. She is also a member of our club. So when she goes with us, she always sees our world. This is a story in itself.

We were waiting to check out of the office. A dad, mom, and little girl were ahead of us. The mom did something similar to what I do with Ivey at times. She noticed me and S. looking at her daughter and she kissed her daughter on the cheek and said, 'I love your cheeks.' Her daughter's cheeks were larger than normal, a deformity. She stated the obvious. Once the little girl noticed me and S., we spoke to her like you would any other 18 month old. Once the mom noticed Ivey in her stroller, she relaxed. We were in her club, not staring at her child.

Completely different scenario, Matt came home about 8:00 pm tonight. Knowing that he would be late, the boys were cranky, and Ivey's things were already packed, I took them to Harvest Moon. So there we were in all of our glory. The boys were being angels eating while I hooked up Ivey's feeding and meds. Then two women sat down behind us. One could look at our table directly. The other had to turn around in her seat. They were both saying sweet things about the 'tiny baby'. So I turned so they could see Ivey. One stopped talking and just stared. Normally I do not just offer up information, some people feel better not knowing. Ignorance is bliss. But since she stopped dead in her tracks, I had to say something. I just said - she is blind. The lady turned abruptly in her seat and would not even glance back. Nothing.

I would like to say this is not normal behavior, but it seems to be. In those moments of trying to stand tall for my daughter and my two onlooking sons, I feel so very proud of Ivey and my sons. There is not a word in the dictionary to describe the emotion that rises up in those moments. I feel sorry that they do not see the absolute beauty right in front of them. They are missing out on a true miracle and the chance to meet an Angel.

I will put a plug in for Harvest Moon here. Our waitress, a cute blonde, was phenomenal. She even took the boys to pick out a piece of cake.