Recently on Facebook I shared a blog entry that Glennon over at Momastery posted.
It really, really, REALLY resonated with me. If you don’t feel like reading it, or you are offended by male and female private parts being mentioned several times, the gist of it was with all the different social media out there- we are sharing more- but we are sharing the shiniest, cleanest, most put together version of ourselves. There are exceptions of course, like those who post on facebook or twitter simply to complain. But even those people are not being honest. Life is more than the things that irritate us, and the things that make us look funny, smart, attractive, and without problems. Let me be clear, I know I am a frequent user of Facebook, and a frequent poster at that. And I also share lovely pictures of my son laughing with joy, my husband and I on vacation having a blast, our little family enjoying a hayride or a holiday meal. I often post fundraisers or show dates, accomplishments that Evan has attained, new haircuts, etc. I am not saying we should all stop posting fun, wonderful things about our lives, because gosh darn it, we have some great stuff going on. What I am saying though, is that truth-telling is also awesome. It is more than awesome, it is needed. I have said this often in this blog, and I say it often to my friends, we, as mothers, are not honest enough with each other.
I remember thinking during the first few months of Evan’s life, when my eyes were glued half shut 24 hours a day, and our house was a wreck, all I wanted to do was go have a drink with my girlfriends and breath a little. But thinking that made me feel AWFUL. Because I received message after message from people saying, “Don’t you just want to hold your son all day long? Isn’t this the best time of your life? I bet you never ever want to come back to work…..” And holding my son was lovely, when I could pick my head up long enough to enjoy it, but with nursing every 2 hours, I didn’t really have just nice cuddle time with him because we were navigating him staying on my chest correctly and keeping his food in.
But did I post that on Facebook or email my family about it? Of course not. But you know what I did do? I read blogs. I read Momastery from start to finish and reveled in her truth. I soaked up her entries about needing a break from her kids, getting frustrated when being told to Carpe Diem, when she really wanted to throw her Diem right back at the nice person telling her that. Her truth made me feel better about my truth. And my truth became less burdensome, less heavy, less guilt producing. I had a few very close friends I could talk to about my guilt, anxiety, and worries, but overall I hid my feelings, stuffed them away because I felt like I would be looked at this awful, horrible mom for not loving every living second I had with Evan.I kept thinking that somehow I had missed the boat. I had missed the parent boat that allowed you to feel like you had it all together. Because I would look around me and see people who had not only caught the parent boat, but had smooth waters with no turbulence.
Now, 21 months after having given birth to our little dude- I know that parent boat doesn’t really exist. Some of us just talk more about our early new parent days and some of us muddle through and don’t mention the tough days. And I also think some parents are more suited for the newborn stage. Some people are big baby fans. I remember a friend saying to me, “phew, I am NOT a newborn person. I did much better once my kids hit one.” And old co worker even said she thought babies should come out 6 months old, that it would be much easier that way. Hmmmm…. I wonder if I heard those two truths but chose not to allow myself to relate to them because I still felt so guilty for not being thrilled all the time.
So I am trying to make up for lost time.
-I am trying to be more truthful for my sake, and for the sake of other moms out there who are trying to hold it together.
-Trying to feel okay about all the bad, the tough, and the beautiful that happens when you become a parent.
This blog entry came to be because of a particular incident last week. I brought Evan to CHOP for routine bloodwork to check his calcium levels. Individuals with Williams Syndrome have notoriously high calcium levels- which can be dangerous for many reasons. It can cause kidney failure and also heart issues. Evan’s levels have been moderately high and we have had to alter his diet slightly to try to regulate his levels. We have his geneticist check in appointment coming up soon so we wanted to have his levels checked so we could discuss it at our appointment. Anyhow, the experience at CHOP was not a fun one for a few reasons, but mainly because they had to stick Evan twice to get his blood moving and he was inconsolable. On our way out, I stopped to look for our parking pass so I could pay before getting in the car. Of course, I could not locate the pass in all six places I looked. I started walking towards the car pushing our wobbly umbrella stroller and the tears started coming, and coming hard. I just kept pushing towards the car, hoping that the folks entering the hospital didn’t see my face and feel bad for me. (ridiculous) I felt all the frustrations of the day hit me, and the overwhelming feeling I get every time I take Evan to one of his appointments. I allowed myself to feel frustrated, angry, sad, and just exhausted. I arrived at our car, picked up Evan out of his stroller, asked him for a hug, which is a new skill of his, and he leaned on my shoulder and tucked his head against mine. I was still sobbing and he, of course, started giggling. I looked at him and said,”You always know just what Mommy needs, don’t you?” I felt calmer already and more at peace. I just needed to get it out. I realized in that moment that I really don’t “get it out” very often. I used to be a fountain of emotions when I was younger. If I needed to cry, I did it, if I needed to be sad, I called someone and shared with them. But for some reason as I have gotten older that has changed. But I’m working on it. I joke with my friend Talia, we both always say it is easier for us to worry about the other, than to allow the other to worry about us. If that makes sense? When she worries about me and wants me to share, I feel better listening to her and supporting her than sharing my issues.
Soooooooo……this has been a super long post. The point being, I did call someone that day to share, and I did tell my truth. And I am doing it again now, for a much larger audience. Was my rough day at CHOP all my truth? No, of course not. The next day, I took Evan to get his hair cut, he signed “more” without any type of prompting whatsoever, and Todd and I shared a great meal together that I actually made. It’s all part of my truth, the good, the tough, the amazing, the painful, the adorable….the list goes on.
What is your truth?
Try preaching it one day.
You might be surprised at how good it feels.
In late May of 2011, I wrote this post, “I am days away from change….)possibly less”
two days before Evan came into this world all wrinkly and purple, having used his umbilical cord as a jump rope. I remember sitting here at this same dining room table on my yoga ball bouncing away and typing about my fears, excitement, and memories of my dad.
And little did I know as I bounced away on that ball, impatiently waiting for our son to arrive- that my whole life was about to change so dramatically. My days and nights would be turned upside down, my relationship with my husband would be rocked all over the place with incredible joy and frustration, and everything in between. My heart would bleed with love and worry, and guilt and pain, and connection. I would no longer think of myself first or consider my needs as being my only priority.
Todd said it really well the other day. We were talking about how we seem to be arguing a little more lately than we have been in a while. I thought it might be due to Evan’s diagnosis and all the appointments and his difficult GI issues. Todd said he felt like he was sharing more with me about his emotions and that in all honesty he felt better than he has in a long time as far as anxiety, etc was concerned. I said in response, you are probably right- we are both being more honest with each other. And then he said a golden truth- “We are just “more” in general, we are parents now, and we have to be more…….just “more.”
Who knew on the couch while we were about to watch our not so guilty about it pleasure- Big Brother- that he would spill out such a jewel. He is right. We do have to be “more.” But with what we have to be- we also gain “more.”
more carpet cleaner,
more on our receipt at BJ’s.
more smiling for no reason,
more appreciation of our precious time together as a couple.
More time sitting on the carpet than standing,
more back aches,
more short fuses,
more bruises on our feet from toys,
more yoga pants in my wardrobe,
more of a mess in our front room.
Heck, more of a mess in our whole house…
The list could go on and on.
On May 27, 2011, we became parents. And no matter what happens in our lives from here on out- that title will stick. That title will dictate many, if not most, of our decisions, thoughts, and feelings.
More……I am okay with that. I am more than okay with that.
Written on August 29th, 2012 for a feature on the awesome Pickled Bean.
We had spent about 4 months of dealing with up and down digestive issues with Evan that had affected his growth and concerned our pediatrician. He displayed aversion to food with any type of texture other than watery puree and could vomit up to 5 times a day, without any real pattern. Three days after Evan’s first birthday (May 30th) we went to a geneticist at the Children’s Hospital of Philadelphia and were told that our son has Williams Syndrome.
In a word, we were blindsided. We had no idea that the issues we had been facing for the past 4 or 5 months of our little guy’s life were due to a genetic condition. I had been assuming all along that he had issues in his esophageal tract or that he might have some slight sensory issue but nothing major. He did not have the typical early detection of serious heart issues, in fact when it came up that we “might want look into genetic testing” as the pediatrician on the feeding team said in late May- the doctor even said she was 90% sure nothing would come of looking into it. Probably not the best thing to tell a parent. But she changed our lives that day in that little, cramped, stark white office. She questioned whether it had ever occurred to us that our son does not share our facial features. I literally felt like the wind had been knocked out of me. My father passed away a few months before we found out I was pregnant with Evan, and our son is a mini Bobby G, my Dad. He has the same droopy cheeks and big huge smile and personality. And I have clung to that fact very tightly. So hearing the doctor suggest that he does not look like us hurt more than she could know. A day later- she gave us the term, Williams Syndrome- which neither of us had heard of. I have been in special education for over 11 years and I have never encountered a student with this condition, nor had I read about it. So of course, after shakily entering the term into my keyboard and coming to the WSA page, my heart just sank. I remember not being able to focus on the information as a whole, I only could see certain words popping out at me, like, “low IQ, 75% have mental retardation, have successful jobs as greeters at grocery stores, need one-on-one aides, etc.”
I remember collapsing into the recliner and calling my husband crying. Somehow he had already found the term online when typing in some of the issues we had run into and things that came up at the feeding clinic appointment. Both of us had trouble having the conversation and I just said that I thought his life expectancy was not different than a typically developing child. I hung up the phone and went up to Evan’s nursery and picked him up out of the crib where he had been fighting a nap for a little while. I held him and rocked him the recliner, which I had not done in quite some time because he doesn’t wake up over night much anymore.
And I lost my s***.
I am not one to curse unnecessarily and I apologize for that, but I did. Plain and simple. I started wailing and could not stop. And the funniest thing happened (which now is so incredibly symbolic), Evan picked his head up off my shoulder and looked at me and started giggling uncontrollably. He thought my wailing like a banshee was laughter. And he thought it was was the perfect time to laugh right back! So he kept laughing and sucking in air and squealing. Of course I immediately smiled and felt my heart start to lift.
15 months in OBX
and that infectious laughter –
is really at the heart of our new story with our son. He is fine. He has a few less genes than the average child his age which makes him less likely to walk before 2, or be in a regular education class without assistance, or love to eat chicken nuggets and grilled cheese right now like his little toddler friends. But those missing genes have done nothing to his HUGE personality. He is
and just so very loving.
He has already taught us so much in 15 months, and I know he will continue to for as long as we are blessed to walk this earth alongside him. If I am being honest, (which I know I appreciate), of course I am still scared. Yes, I get angry sometimes when I think of how his future might be affected by WS. But the thing both my husband and I keep trying to remember is that we are far more worried about how his future looks to US. We are concerned over how his life is going to be different from what WE want for him. He is pretty darn happy with how things are going for him right now. Eating his sweet potatoes, chasing our choc lab mix around the house, climbing up the steps over and over no matter how winded it is making Mommy. I do wish people would stop saying they were sorry to hear about Evan’s diagnosis. This isn’t a sympathy card worthy circumstance in my book. I know when there is difficulty finding the right words to say, “I’m sorry,” might pop out.
But please know, it’s really okay. We know there aren’t any magic words you can say that is going to make it all better. Because we don’t need it to be all better- Evan is our son, he is our reality, and although we didn’t expect it to include a genetic syndrome, it is okay that it does.
So many very deserving, amazing people cannot have children or lose their children at a a young age. I had a miscarriage before Evan, I know how devastating that is.
Evan is here, in our lives,and as I keep repeating, he is more than okay, he is a rock star.
And that is not me just blowing sunshine. That is me being a proud mama.
I am so thankful for the community of parents I have “met” online and I truly wish I lived closer to everyone so we could all hang out and celebrate our awesome kids.
I also want to say thank you to our family and friends who are truly amazing. They lift us up with words, laughter, glasses of wine and beer, tears shed, and just by loving us. Thank you to all of you.