Sometimes, in this overwhelming thing called life, it is easy to dwell on life before a certain thing, person, event, and life after.
My little guy woke me up at 2:00 am (after decadently allowing myself to stay up until midnight absorbing the third novel in a trilogy I have been waiting months for) and he was just sobbing. No fever, no real illness, already on antibiotics, just sobbing his heart out and clawing for me. My half asleep brain struggled through the fog it was in to decipher what was happening and start the mental checklist for moments such as that. Experience led me to his very snotty nose making a nice warm milk bottle hard to drink. I pried myself from his death grip and stumbled to the kitchen. Now, normally I would take him with me but I was at that point of mid-consciousness that would have leant to an accident. I poured a bottle of milk, placed it in the microwave, opened the cabinet to the left of the microwave and blindly located the baby Vicks. Microwave beeped, I put in the scoop of thickener we always add (Will needs nectar thick liquids as he aspirates thin liquids into his lungs thus causing numerous aspiration pneumonias or just plain icky upper respiratory infections) and stumbled back to my now whimpering boy who, luckily, our kitten went to console. As I held him close and talked him through me putting Vicks on his nose and how that would help him he clutched at his bottle with one hand and my free hand with his other. Now, I'm not really a cryer anymore, I can't afford to be, so those few times a year the tear jar in my body needs emptied finds me crying at the strangest things (like Days of Our Lives, my soap). But sitting there with him, seeing the distress in his face, realizing we were up for the day after two hours of sleep on my part and knowing all I had to do with my day got my brain chugging.
Life before the diagnosis. I try not to dwell or obsess about what was, but sometimes there are those thoughts. There are many things I miss about life pre-diagnosis (or "PD" for point of this blog entry), but there are many things I am lucky enough to know because of life after diagnosis ("AD").
If I had to really quantify what I miss about life PD it would be the obvious, right? I totally miss sleeping, boy howdy. There was a stretch of Will's life, shortly AD, where we just didn't sleep more than 2-3 cumulative hours a night for MONTHS. As crazy as it sounds, it is less painful that way then where we are now. The warm weather has brought about a much more tired boy at the day's end which seems to trump the genetic predisposition to be a being with little need for sleep. This new stretch of really great sleep makes nights like last night really painful.
I miss being able to voraciously absorb as many books as I can get my hands on. If it isn't obvious, I am pretty obsessed with words. Written, spoken, doesn't matter. Always amazes me how linking together a few words can impact me so deeply. I still read, but nowhere near what I would like to.
I miss not being so completely concerned all. the. time. This never ending vigilance is downright draining. And since I suck at saying I need help and/or asking for it, you see where this is going. Being raised by the mother I was, I have this guilty conscious when someone is taking care of my child when I can be. It is an awful trait to be honest. I am an important part of this equation, and I can say that here, who deserve to have rest and help but asking for it and taking it without guilt isn't easy. Times he does go with his father, albeit difficult, are welcome reprieves where I can read, spend time with Gabbie, relax, nap, watch cheesy TV. I have not progressed to being able to be without him at night. Baby steps.
I miss not being so jaded in terms of matters of the heart. The course of my life has definitely brought me to a point where, to be totally honest, I am daily losing faith in humans. Too much has happened, people just do *not* seem to think before they act or speak and I'm finding it harder and harder to turn the proverbial other cheek. I once was a girl who was such a day dreamer, believer in all things impossible - ain't no mountain high enough, ain't no valley low enough. Hearts and flowers for DAYS. I miss the lighthearted nature I used to have. But I don't miss the pain it could cause and I definitely see how it led me to where I am today. A good and bad thing, believe me.
But above all of these very real things I miss, the things I miss most pertain to my son. The last few days I have been feeling the very real, very powerful and tangible and sometimes breathtaking pain of his silence. I have many friends with children who are chronologically much younger than Will, but developmentally he is at their age. I hear stories, read things on Facebook, Twitter, in blogs and it seriously can bring the tears. I remember my crazy gabby Gabbie at this age and it is enough to make typing this difficult. I miss his voice. Now, I never really heard it nor do I really know what he would say, but I think about it all the time. I miss sitting with a toddler and having those silly crazy conversations only a toddler can have. I miss being able to hear about his day or the places his imagination had taken him. I miss him being able to wake at 2 and tell me he is scared or hungry or sick. I miss hearing my baby call me mama and tell me he loves me. I don't deal with seizures, yet, but damn I hate Angelman Syndrome for taking his words. Being such a talker/writer/lover of words it was the most painful part of his prognosis, for me. I am still reeling and, honestly, don't know if I will ever be ok with it.
Lack of any real communication, at least at this point, complicates pretty much everything else. Trying to figure out what he needs, how he feels, what he did, why he is doing something. Trusting people to care for him and be around him is paramount to both of our well-being and, well, I'm sure what I've realized thus far shows you all how *great* I am at reading people lol. Ironically it is easier when it comes to who will be around my children and, so far, I have found some pretty amazing people for both kids.There is just a level of complexity lack of speech creates. I feel this is something we will work through and get to a point where he has his own avenues of communicating with us, but I don't think there will ever be a point where my heart doesn't ache and long to just ONCE hear him say "I love you mama". Maybe one day that dream will come true.
On the flipside, life AD has brought me so many amazing things I never would have had or known. I am part of an amazing community of parents, grandparents, medical professionals and friends that all came together solely because of Angelman Syndrome. The weekend after his diagnosis, my Facebook friend list grew by over 400 in a few hours on a Saturday. I had to log off to process so many things coming at me and, while there have been a few personality speed bumps, they are my lifeline. I can guarantee someone is up at 3:00 am, to talk to, vent to, solve the mystery of our children with and that is priceless. The small community of Angels here in our great state of Ohio has definitely become integral relationships in our lives and I feel we were all meant to meet.
Life AD has taught me tenacity, perseverance and patience. I have found strength in places where I would normally have crumbled. I have learned to ask questions of people first, trust later. My children are always priority but I am a fiercer mama bear than I was PD.
Above all things I have learned, and try to convey to whomever will listen, that it can all turn on a dime folks. Life, as you know it right now, can completely be turned on its head with one 5 minute phone call. Sadly, most don't truly appreciate that until the phone rings.
And next time your little one is talking your ear off and driving you a bit crazy, remember us moms who live in a silent world and call me, I will talk to him/her for you. :)