I find myself working so much more often than I do actually relishing in my children these days. Sure, you say, of course. Most moms do. The ironic fact is that I’m officially a stay-at-home mom, a title that, depending on the day is either the greatest blessing or one big frustrating pain in the neck. Noah is in school four half days a week, while Avry spends most mornings with me, but is in a program of his own two days a week. Three days a week I have a mommy helper come over the afternoon. She takes the boys for walks, feeds them snacks, and generally attempts to keep them from killing each other for a couple hours while I lock myself away upstairs and work to the soundtrack of squeals, screams, and a Sesame Street counting video. It’s an incredible gift to have people to help me, to have a break from my children, especially when they’ve worn me down to a nub and all I can do is eat ice cream in my bed before curling into a ball and sleeping, i.e. last Wednesday.
While I have help I telecommute for my job that I’ve had since before Noah was born and I am writing a book about the Ketogenic Diet and the Modified Atkins Diet. I’ve been mum on mentioning the book because I’m still the kind of gal who’s afraid of the other shoe dropping. But the contract is signed, the book is well under way, and it will be published in December. I am writing the book with a fantastic woman who lives in China and has raised seven children. She makes the days when I’m feeling lazy – or cranky or tired either of working too much or of working too little or of toddler tantrums in general – seem utterly unwarranted of complaint.
This book is something of a gift to myself and to all those people who are fighting epilepsy. The Ketogenic Diet saved Noah. It took his seizing little body and gave it a break. Heaping helpings of fat took him from a dramatically delayed and introverted child and turned him into the precocious, stubborn, and often-amazing child that I like to complain about after he’s terrorized me. I can laugh about it now – because I have my mommy helper here to play with him, but this morning was another story. Let me tell you: Noah delights in making me squirm, in making me feel like I have lost every bit of sanity, and if he can do it with Avry as a willing audience, SCORE! And yet when he signs “sorry” and says, “wahry,” I am reduced to a puddle on the floor.
In the last few months we’ve been dealing with so many behavioral issues with Noah that every step I make as a mother feels like a step backwards. I feel lost more often than I feel I have my footing. I’ve read several discipline books, and the methods work and then don’t work, and I never know whether it’s me as a mother or Noah as a child that is the root of the problem. How do I ever know what is age appropriate versus what is a result of Noah’s brain injury or developmental delay? When do I know that this is an issue greater than those that the average toddler mom deals with? Is this another special needs thing rearing its complicated head?
And then I think, as I steal away to write this book, or as I telecommute for work – or like right now when I’m writing a blog because I can’t focus on either of the other two aforementioned items – if my being locked away from them this often is somehow to blame for these behavioral outbursts. Have I taken to finding my place outside of this home too soon? Is this what is sounds like, the working mom’s dilemma creeping into my lovely white house? Do I work less during the day and work more at night? Do I put on my cape and become Super Woman? Surely I can’t clone myself; that would spark far too much controversy. I’d hate to read someone venting about it on Facebook. You know the posts; you think, sheesh, glad that wasn’t directed at me!
I could wrap up this blog nicely, organized, with a theme I’ve gently hammered onto the page, but that would require some cohesion of thought that has completely gone AWOL. Instead I might ask yet another question: how do you split yourself into all the women you want to be?
I miss your updates, I hope all is well.
Hi Erin,
I happened to find your blog on a search I’ve been doing on shaken baby sydrome. My now 4 month old was also shaken by her babysitter or her husband as they were both at home. However, I am being made a suspect. I don’t know what to do, I cant afford a lawyer, I am single and I have 3 kids. Is there any resources you can point me in the direction of?? I’m at my wits end, the social worker has made me have no contact whatsoever with my kids! I didnt hurt my baby!! Please email me at lbessant001@aol.com. I dont know if you have a facebook but I will try there as well.
And also sorry to hear that your son was a victim of this as well. I am beyond my limit.
Thanks,
Lisa
Dear Erin, sorry for my english, i’m going to try to do the best i can. I’m a chilean mother that suffered the same nightmare like you, with a young Peruvian women who supposedly took care our 6 months child (june 2011). I’ve been the last year searching for all kind of information to help us on legal court, and that is how i met your son and your blog. I’m sorry but i couldn’t read much about it cause all is in english and it’s difficult for me.
I have a son of 1 year old that suffered SBS at 6 months of age. It’s was the worst time of our lifes, but thanks God he doesn’t have any consequence (at the time). Here in our country the law rules are so poor in these kind of things. We have all kind of exams, doctor’s tell and family support to prepare our speech for the court (maybe on october). And i need to ask you if you can help me to obtain information of other cause in USA or your, what kind of information or proof are importante to demostrate the guilty of this “women” (if we can call her woman). If you can let me know about it, i’ll apreciate it. We need, for example, what kind of question are important to do to the doctor i don’t know what else!! i’m lost trying to do justice for my son!!! only you can know how i feel… and i for you. Please-please help us!
Eternally greatful!!!
bless for all of you.
THANK’S!!!
Pilar
I am so glad the blog is back. But what I’ve discovered is that you were never really gone. Somehow I lost the thread and was stuck on a year old entry. I’m a grandma but I well remember “those” days. The suggestion that you speak with Noah’s teachers and other parents is valid. Sharing experiences with other parents can be a valuable source of information. And strength. God bless.
Erin,
I haven’t read your blog for some time but I did talk to your father-in-law at breakfast this morning for an update on Noah. Your latest entry strikes a particularly poignant chord with me.
As a mother, even though my children are older than you are, I still remember having the same feelings. I was by choice a SAHM but there were days when I felt like the most inadequate mother on earth. Also the most conflicted, confused woman alive. I think we have lots of company there!
But your so typical concerns for your children and yourself go beyond what most mothers have to face. When you ask “how do I ever know what is age appropriate and what is the result of the brain damage”, my heart aches for you. It is the question which makes your road such a difficult one. It is the same question my family faced when my father suffered a severe head injury many years ago. For years after I became an occupational therapist, I kept seeing my father in so many patients. Finally I realized I wasn’t seeing my father, I was seeing the brain damage. Only after I had seen it in many people, in many different manifestations, could I sort out how much of how Dad acted was within his control and how much was the result of the injury. How much easier our lives would have been if we had understood that years earlier!
May I make two suggestions? The first is to talk to whichever one of his teachers or therapists you are most comfortable with. You know Noah much better than they do, but they know learning disabilities and developmental disabilities better than you. They have that broader view that could be very helpful to you. So many family members struggle over issues that really are beyond their control and so many others don’t expect as much as they should because they don’t think there’s any hope. This is where an open, trusting relationship with a professional can really make a wonderful difference.
My second suggestion isn’t probably practical right now. But once both boys are in school, perhaps you could spend some time in a classroom with children with disabilities. I did a lot of volunteering in my kids’ classrooms…I was blessed that they were developing typically…but even that helped tremendously because I could get some perspective on just where they stood compared to their peers. Seeing other children with issues similar to Noah’s might help you gain a similar perspective.
Oh…and I guess I have a third suggestion. More like a plea. I mentioned it to John this morning, probably not for the first time. For most of my professional life, I worked in schools and I watched families agonize over the best course of action as their child with special needs faced the challenges of life. We as professionals would help the children and try to help the parents but knew that most of the time, they would have taken our suggestions so much better from another parent…someone who had “been there”. What so many parents need is someone who can say “We tried this and it didn’t work, or I wish we had known that, or I agonized over little stuff and missed the bigger picture.” That kind of help can really only come from someone who has been there. I hope that once Noah is a teenager or young adult, you will find the strength to go back and revisit some of the painful times you are going through now so that you can help someone else make sense of their version of Noah’s Road.
Esther Miller
Erin,
I could have written this post myself. Being a mom is the hardest job in the world and you’re doing an amazing job. What is a result of his injury, what is a result of his age… it’s all just Noah and who he is. It don’t imagine it would be any more or less frustrating if you had the answer. My two youngest are nearly the same age as your boys (11/08 and 2/10) and I find myself continually saying the same things. I was teary as I rocked Jack to sleep today trying to will myself to not wish these days away and praying for patience and wisdom with what to do with my life. Everyone has a need to feel valuable and be known.
I don’t have any answer, I just wanted you to know you aren’t the only one who feels this way. Virtual hugs to you- I will pray for wisdom and guidance for you as well as a continued sense of peace and internal rest for your struggle. Much love!
Hi Erin, I googled you to find you (my computer crashed and I lost the email with the list of questions that you wanted me to respond to for your book). …I’ve read through Noah’s story and had to take pause….I can’t even imagine. Your strength is very apparent in your words…..I hope you are able to relish in those moments that children bring to each day; they are indescribable. We lost my nephew just before X-mas to a senseless tragedy and are all trying to watch for those moments because nothing else makes sense. …At any rate, please email me again that list of questions so I can get them back to you by March 28. This time I will SAVE it. Blessings. Beth Zupec-Kania
Hi, Erin. The days are long, but the time is short. I’m a SAHM of two boys. It is the hardest job in the world, but I wouldn’t want it any other way.
Thanks for the update.
Debbie
I’m sorry to admit that I don’t pray for you all as much as I did in the beginning of Noah’s Road. But just read your latest post and consider it a reminder to put you all on my updated prayer list. I will try to be more faithful in remembering the family…Mom, Dad, Noah, Avry, Grandpa’s and Grandma’s. Mary Sue (Collins) Burch (A member of Valley Baptist Church in Edinburg for over 20 years.)