Life has been pretty ordinary as ordinary goes in the Forgione home since my last post on June 16th. I know now that my goal of writing often, or even routinely, was lofty given my busy and sometimes chaotic life. Having four children, a part time private practice, a part time job teaching group fitness, being a wife and homemaker, and trying to sneak in just a bit of time for me leaves very little left in the tank for writing! I do enjoy it though. It's a good way to decompress and I find comfort in knowing that friends, even strangers are following Ivy's progress and thinking of her and our family, and keeping us in prayer.
The boys started school this past Monday. Our youngest, Jade, went to Kindergarten, and our oldest, Gabe, started middle school. Jairus, in the middle, went to third grade. I can hardly believe that I have a child in middle school. I look in the mirror and yes, I do see that I am no longer a spring chicken, yet when I hold Ivy, I feel so young at heart. She has given me so much additional joy, and who can ever have too much joy??
The summer ended and Chris went back to work too. He is a teacher in a traditional calendar school so our summers are really fun. I continue to work, but have a very flexible schedule, so we typically get to enjoy some pretty significant family time going to the neighborhood pool, hanging out at home, or hosting friends over. The summer is also a time for Chris to have some really special time with the kids, and be the primary caregiver while I am working. We've been doing this for 11 years now so we have it down to a science. It's really nice that he gets this time with them. I don't have a lot to say about the perks of being a teacher given the poor pay, but having the summer to be at home with your kids is certainly a nice part of teaching for us. This summer was no exception to quality family time! I'm grateful that we have a healthy daughter and three healthy amazingly fun sons that we were able to spend so much time with. It's over however, and the routine is back and Ivy has started daycare of her own. I was sad to see it all come to a close, but mostly the sadness is for what is still to come for Ivy.
I wanted to mention that she has a wonderful in-home nanny who we were very fortunate to find. I'm a big believer that all things happen for a reason and finding our nanny is no exception. I could not feel better about Ivy's care. I get daily texts with a picture of Ivy and the day's activities from reading books, to playing with toys, to splashing water. I'm so glad we have this arrangement because Ivy will not be exposed to the multitude of germs at a regular daycare setting. I have no problem with them in general - Jade attended one for five years and I loved it, but it was not an option for Ivy given the fact that she will face multiple surgeries over the next 3-5 years. Besides, I love that she is getting so much more 1:1 attention with her nanny, and really cool and unique experiences that you just can’t get in traditional daycare.
We are under a month out from our first surgery just outside of Chicago, and I have certainly had a range of emotions. I haven't really wanted to share a lot of them publicly in this blog. Some of my toughest struggles are best shared with Chris, my parents, and close friends. I have leaned on them all over the past two months as I have processed what is to come for us.
When I first joined a facebook group for Nevus information, I felt so glad that I had found a "home" so to speak, but I have to admit that over the past few months, the news that I read in the feed is not always happy news. I have had to not follow a lot of it for my own sanity. Nevus kids go through hell folks, and not just due to removal complications. There are a small number of kids that I am aware of who have died from complications related to their nevus. These are hard posts to read. My heart breaks into a million pieces when I try to comprehend what these families are going through. I feel like I want to stick my head in the sand and not be aware of these tragedies, but at the same time, I could not imagine losing the support of some of these wonderful people.
And then there are the surgery complications. Those are particularly tough for me because that could easily be Ivy in a few more weeks. Infections, expanders coming through the skin, heavy scarring once removed….Don't get me wrong, there are a lot of positive and uplifting stories too, and there are a ton of successful surgeries with wonderful outcomes. I'm just taking it all in, and it's hard. I look at my sweet, perfect Ivy and I wish that I could trade places with her. Life is so unfair, but I know it is for all of us. I have accepted the "life is not fair" fact a long time ago with my precious sister died. You just never know what you are going to get in life. After the shock wears off and the emotions go haywire, eventually you hope for some peace and slowly settle into a new "normal" of life. That is how it is with Ivy. After the whirlwind of emotions that I have experienced, I feel like our little girl is just perfect. I accept. That doesn't mean that I like every element of it, but I accept it. I take her out just like I did with her brothers. Life goes on. People stare, sometimes kids point. I get upset when I'm feeling particularly vulnerable but for the most part, even those experiences have gotten better. I’m super proud to have her in my arms and I sometimes carry her in the Bjorn with her face facing out for all the world to see. I've grown thicker skin through all of this.
To tell you the truth, Ivy softens people. Many times, I've had people strike up conversations with me, and share very deep feelings and stories, almost as if Ivy helps them be more comfortable with their own vulnerabilities. I was at our local Kroger grocery store a few weeks back and I was waiting at the meat counter when a complete stranger peeked inside Ivy's car seat. Instead of asking about "what was wrong with her?" he told me how beautiful she was and instantly shared that he had lost his only daughter when she was 16 yrs old in a car accident and how he grieves for her every day. I felt really special that he shared that with me. Another time at the Target checkout, a cashier shared with me that her daughter has Prader-Willi Syndrome and how hard that it for her. I was honored that she had shared that. I think talking to each other, relating, and connecting is the human experience. Ivy has enriched that for me.
So pretty much, the long and short of the last few months is this. We are busy, we are fulfilled, we are worried, we are tired, we are laughing as much as we can, sometimes we are sad, we are enjoying our time with each other, we are snuggling with Ivy a lot, we are spending time with family and friends, we are celebrating birthdays and other special events, we are running around like crazy people at times because our schedules are so full, we are settling into our new neighborhood, and we are loving each other and leaning on each other.
Thanks for being interested in our Ivy. She really is special.