We have had this January appointment to possibly find more answers for Tuck scheduled for 5 months. It was last Wednesday. The anticipation for answers was so high and I felt anxious for weeks before. We did get some answers. Tuck has Autism, that was a definite answer. There is also very high suspicion of the Dr. that Tuck also has a genetic disorder. A Pseudo- Down's Syndrome, which could be a number of different things, and takes a very 5 month long wait blood test to figure out, which we're doing. A step in the right direction, but not a clear answer. We have always felt that it was something genetic, and not just a global delay, so to have the doctor confirm our hunch felt good. We also found out that Tuck, probably due to what ever this genetic disorder he has, is also "intellectually disabled", (commonly referred to as mentally handicap). That was real tough one to hear. A big lump appeared in my throat when I could tell where he was headed.
Truth be told, it was all tough to hear. Even though we suspected most of it, and knew deep down it was all likely, it was very emotional. We both realized in that appointment, and throughout this weekend, just how much our life will be changing. Immediately, and possibly long term. The rose colored glasses are off, and we are both processing this slowly.
Immediately the Autism is our priority. We have not had much of the digression that can be typical with kids with Autism, maybe because we caught it early. He has stopped clapping, and used to say mama and dada, which he no longer does. What has been the most challenging has been his behavior. Lack of any communication skills + very very short fuse if things don't go just his way + increase strength, without a correlating awareness of that strength. I am a barrel of emotions when it comes to it, and my mood and approach to it changes almost by the minute. It's all still really confusing, overwhelming, gosh it's overwhelming, and scary. I feel both a healthy motivation to jump into treatment, and a sense of defeat and bitterness to everyone who's kids are born so healthy, who never have to go through the daily battles. That's really hard to admit, and I hope it's not received in the wrong way. I try to be a positive person, I try to focus on the good. I post a lot of the good, in hopes that my mind will focus on those moments, and in turn, good will come back to me. Lately though, I have been hardened, because it seems like we're being pummeled with bad news. It would be fake for me to say otherwise. It absolutely pains me to say that, as I feel like it's a completely different person than I was 2 years ago, 5 years ago especially. I guess life has just worn me out for the moment. I'm not giving up, and I do believe I can get back to that cheerful, positive person I was, I'm just not ready to pull the pom-poms out yet, and I think that's okay. Please let that be okay.
I've decided in 2014 to open up more. The hardest part of this entire process, besides the unknown, has been the isolation. The living away from family and friends physically, Wyatt's long work hours, and putting up barriers emotionally about how we are really doing. Since we've moved to Indiana we've felt incredibly lonely and isolated, like we're battling this huge beast all on our own and no one even knows. When you live by family and friends they're in your home, you're in there's, you can gauge a persons well being much easier, and it's much easier to open up. Over the phone, email, text, instagram you get about 1/100 of what is really happening. It's hard for me not to tell myself "they won't understand". I usually say that in my head, and just keep things to myself. I am also a pleaser by nature. I know people don't like complainers, I know people like me for my "cheerful, fun nature", and so that's the side I show, even when I don't feel that way. It's sort of a double edged sword, because I keep myself isolated. Sometimes talking to people who don't/can't understand, but are genuinely empathetic is helpful, and sometimes they say all the wrong things and it makes it worse. And sometimes it's just difficult me, and it doesn't matter who I'm talking to. Just please be gentle when talking to me, and I think I could safely say this about anyone who is dealing with something similar. Listen genuinely and without "mom judgement". Don't one-up, or relate and then shift focus. Don't say things like "well, at least", "that's pretty good", or "you still have so much to be grateful for". For me personally, statements like that, instead of boosting me up, like maybe they are intended, only seem naive or insensitive.
I don't know that I'll be able to wrap this post up with a pretty little bow. Gosh I would like to. I will say that we all, of course, adore and love Tuck more than words can say. He brings tears, of frustration yes, but also of so much joy, to me all the time. Everywhere we go, he lights up the room, and makes everyone fall in love with him. I hope he never remembers these days of me not knowing what I'm doing, and that I can figure it out soon and be a better mom to him. And thank goodness he has the sweetest angel of a sister who does anything and everything for him, and a brother to whip him into shape and always be by his side.
Thank you to those who have called, and emailed. It has meant a lot and does always mean a lot. From family, friends, and blog readers. There are several emails that I haven't replied to (even ones from months ago) and I truly apologize. Please know they were read, and most deeply appreciated, and then re-read. They really lift me up, and what amazing women you are to take the time to write me something encouraging.