I am aware of my oddities as a person. I know I can be withdrawn, almost aloof, and that I don’t always “share myself” well. Some of this because of my continual struggle with depression and anxiety, and some of it comes from a lifetime of criticism. Other’s judgement of me and my judgement of myself have developed some deep cracks in my mind. My therapist would say that I cope at an expert level, and while I see that as a compliment (and maybe shouldn’t) my garbage is a discussion for another day. This post isn’t about me and all my issues, it’s about my baby. He’s wonderful! Seriously, he amazes me every day, and is the world to me.
I realized, for my own broken dysfunctional reasons, I don’t “share him” or our recent difficulties with anyone other than my immediate family and my best friends. I can’t even say if Rob has mentioned anything to anyone other than his life long best friend (meaning his family may not even know. Sorry everyone). I struggled with telling people about his metabolic disorder. I knew that people wouldn’t understand, or know what to say, and I was so internally upset it was all I could do just to make it through every day. The doctors offically popped my happy new mom bubble 4 days after he was born and told me to keep a hawk eye on my small baby for any symptoms associated with his disorder. It’s no wonder I ended up with severe postpartum! We have come a long way since then but we still have “things” to work through.
The disorder my son has can cause him some developmental delays. We are exploring if this is happening to my sweet blue eyed baby. What this entails is a litany of tests and doctor’s appointments. I’ve never been so glad for my job and the medical insurance provided as I have been since our little man was born. So far we’ve had three pediatrician appointments, two specialist referrals, and a hearing test, all in an effort to get him the best possible outcome. I dream weekly that one day he’s just going to start talking. I don’t think it will happen that way but Rob does, and I admire his optimism and wish it would rub off on me.
We have Av’s first appointment for speech therapy for an assessment tomorrow. To say I’m stressed is a huge understatement. At the beginning of all this I secretly hoped the doctors would tell me I was fretting for no reason. When he failed his MCHAT with a high indication of possible autism no one told me I was a helicopter mom on a continuous flight pattern around her toddler. I would have jumped up and down and cheered if they did. I know that wishful thinking helped me get to that point though, and now I’m clinging to whatever small becon of light there is. I have to believe that my son will grow up to be just like every other kid, and not different in ways that mean his peers won’t accept and befriend him. I have to believe that despite his medical differences from others he will know love like his father and I have, that he will find his way in life with the help of friends as well as family.
I don’t want it ever to seem like I’m not proud to be Avery’s mom. His motor skills are amazing! He’s become a climber and can almost get in and out of any piece of furniture in our house and do the stairs all by himself. He’s very independant and knows what he wants. He knows what you’re saying to him, and follows directions. He has figured out how to ask for things he wants without using words, and likes us to sit and watch movies with him. Bless his sweet sticky face, he has made it through a lot and still wears that sweet toddler grin of innocent happiness. Just thinking about the possible road ahead brings me to tears and gives me guilt over my closed lip approach to his struggles. I am torn between protecting Avery and our family from possible judgement and criticism, and showing everyone that we need support and love.
I wouldn’t trade my baby for any other child. Not even a baby without the struggles Av has. I got the baby I prayed for, rare recessive metabolic disorder and all. I would show anyone all the pictures I have of him, and tell all the stories possible about this beautiful boy. My own damage and inability to connect with others during times of struggle or sadness are my own and don’t have anything to do with this smart, brave angel I gave birth to. He needs and deserves all the prayers and praise everyone can give him.
For those closest to us that I should keep updated better, I apologize. I didn’t list his specific difficulties here because they aren’t important. What matters is that he needs a little further attention and help to get where he needs to be developmentally. It’s the road we’re on right now, and I have faith it will all work out.