- Many people know that Gavin has a rare disability. That is nothing new. What they don't know is that we just sat through a two and a half hour long genetics appointment and found out that his diagnosis is likely changing to a syndrome even rarer than KTS. According to the website, there are only 150 people diagnosed with it...period. That's like 1 out of 53 million people! It is called CLOVES Syndrome and basically is KTS plus more. The "more" for him includes spinal involvement and we also have to start having his kidneys scanned. He may be missing a kidney (crazy to think its possible with as many scans as the kid has had, but they've never checked for that) or develop kidney tumors. The diagnosis hasn't been officially changed and I have to talk to his doctors to see what they want to do. We also found out that it may be difficult for him to have children, but that's down the road, so I'm not going to stress about that just yet! Gavin is also having pysch testing this week to see if he has ADD since focus is an issue and recently had a PT evaluation. His growth motor skills are actually average (except throwing and catching), but he will receive therapy over the summer to build up his endurance. Some rare good news we did get recently was that his leg length discrepancy had its first negative growth measure and we no longer have to put a lift in his shoe. We don't have to see that doctor for 18 months which is an eternity in our world! Gavin's behavior at the doctor offices is wonderful, but his behavior for me is not. He is very challenging right now and has a lot of anger and frustration. Unfortunately, Lilah and I are his main targets.
- Macie...Macie...Macie...where do I even begin? Macie has been a challenge from birth. After trying many different avenues, we finally did some psych testing. When we got the results, it was hard to hear some of her responses. We got three diagnosis: Disruptive Behavior Disorder, Anxiety Disorder, and ADHD. The doctor looked at Oppositional Defiant Disorder and Bipolar Disorder but wasn't ready to go that far yet. We've been experimenting with medicines and it's been a rough road. She's had some good times, but she has major outbursts and rages and has a hard time controlling herself once in that state. She is cruel to all of us, but especially me. I took her back to the pediatrician last week and he basically told me that he could treat that anxiety and ADHD, but he couldn't treat the DBD. She starts therapy with a psychologist in June, but I am going to ask for a referral to a psychiatrist for her. It is beyond the expertise of our pediatrician and I need help!
- Brian has recently been unofficially diagnosed with Bipolar Disorder. This is one of our biggest fears come true. Out of respect for Brian, very few people knew anything was going on until recently. We tried to manage things on our own, but it is past that point right now. We are working on getting medicines, doctors, and therapies worked out. It is very difficult to process and accept this, but I am so thankful that he is getting help.
My reality is that I live with three ticking bombs that could go off at any given moment and they are most often directed at me. My reality is that as soon as I get one bomb put back together and the wounds bandaged, it is ready to explode again. My reality is that the people I love and care for the most use me as their punching bag. My reality is that I don't know what my future is going to hold or how I am going to make it through each day, hour, or minute. My reality is that I have no escape and do not get to have a bad day. My reality is that being responsible doesn't pay and I often can't get the resources I need for my family. My reality is I have to do and be everything my family needs all of the time. My reality is that I feel alone most of the time.
Father Alex told me that the people who suffer the most in this life secure a place closer to God in the next life because their hearts have been stretched so much, they are able to receive more love. I sure hope he is right!
Now that you know my reality, please don't comment on my gray hair, or weight gain, or bags and dark circles under my eyes. Honestly, they are the least of my worries and I don't need them pointed out to me. My reality is I'm a survivor and will some how make it through this, but if you don't have something kind or productive to say, then keep it to yourself!
