The Good Mom

What is a good mom? All I know is that I am told that I am one every day. By friends. By Facebook admirers. By co-workers. You see, a lot of these people think that what I go through on a daily basis is too much for most people to take. I guess I tend to agree. My problem with the sentiment, is that they think I am a “good” mom because I don’t complain. They don’t hear the voices in my head of regret, of worry, of resentment. I try to tell them about the sleepless nights, the days where my kids eat nothing but McDonald’s and most never see the state of my house. They see snippets, pictures posted on social sites and blogs about my baking triumphs, or something extraordinary that one of my children did that day.

I have triumphs. My children are extraordinary. I am a good mom. I am so far from perfect. I am probably about as perfect as you are. I have daily battles with myself, with my home, with my children. I think that part of my problem is that I’m not as vocal about the imperfections of our lives. Yes, I know, my blog is about two Special Needs boys, of course they are imperfect. I think my new mission should be to show the good and the bad. The ugly that comes before the reward. To me, that’s what makes a good mom. Honesty.

I’m even thinking of changing my blog name to “The Good Mom” or “The Good Woman.” I want to show women and mothers out there that the “good” ones are the ones that fail. The “good” ones are the ones that can say, “I fucked up, and here’s how I’m going to fix it.” The “good” ones know how to ask for help. I spent a lot of years feeling sorry for myself, for many reasons other than what goes on with my children. If there is one thing that I’ve learned from my grandmother, it is that I refuse to sit here and be a victim. I refuse to grow old with no friends or family to love me because I have given up on my failures. I choose to take my failures and turn them into learning experiences.

I so despise being called a good mom. Isn’t that bizarre? I think it’s because the reasoning behind it is more often than not what it should be. I want to be seen as good because I fail, and because I can admit it. That, my friends, is the definition of good.

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To New Starts

Well, it’s October. The dust is finally settling. Aspie is in Kindergarten. Wheezie is in preshool. It was surreal.

It was the beginning of a new era for me – giving up a whole lotta control to the public school for A, and trusting that my little bubble boy W would thrive in this preschool. I was so worried and guilty that I had not looked at other preschools for W – that he was just going there because A did. But it is absolutely perfect for him. He loves it. They love him. He is showered with love and nurtured to his fullest potential. He is not treated differently despite his physical disability. He mostly keeps up with the others physically, but TOWERS over them cognitively. I have another smarty-pants on my hands. I know every mama says that, but what the hell, I’m saying it too!

Aspie is doing phenomenal. Better than anyone could have ever anticipated. My family and I have so much pride in him, it just gushes out of us. He’s turned into such a good, good person. He had a few hiccups in the beginning of school, but those seemed to have all worked themselves out. He acquired a nasty case of Giardia sometime over the summer, so we were battling that the first month of school. He was medicated twice for it and it seems to have resolved. We retest again in a few weeks. Nothing like a kid with a wonky gut getting a parasite….. it was epic, let me just tell ya…..

Wheezie’s asthma has been very controlled. It’s definitely been active since we’ve had so much rain and it is just WET here constantly. However, he did get two colds already this season that have come and gone and they were NORMAL. Like, normal people colds! I’ve never seen him get one of those before! He was also casted for orthotic braces last week. That was a whole slew of emotions that I had to get through, but now I’m realizing that it’s what we have to do if we want to avoid hip problems down the line. He’s such a mensch. Such a good boy. He amazes everyone every day with his joy and beauty. Now we’re also waiting on the Intermediate Unit to let us know whether or not he is going to continue to get services…… I just can’t understand how a child with hemiplegia can be denied services….. but we shall see….

I went back to work two mornings a week while Wheeze is in preschool. I have a lot of mixed emotions about that too. It’s the same job I’ve been doing for the past five years, I just decided I get more done in the office. It’s perfect because my office is five minutes away and they are still extremely flexible with me. I’m just wanting something….. more important. We’ll see how it pans out.

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Nothing since January?

I’m going to have to put this in a nutshell….. I CANNOT believe I haven’t blogged in EIGHT months…..

1. J(Aspie) is starting kindergarten NEXT WEEK! His IEP is fabulous and I honestly couldn’t have asked for a better team. The Autistic Support teacher rocks!

2. E(the Wheeze) is starting preschool NEXT WEEK! Where did the time go? He’s going three mornings a week. I’m sad but need the time to work and to rejuvenate. I love him so much but he does NOT.STOP.WHINING……

3. J just developed an eye tic that we have to go get checked out now. Put a call into Developmental Peds and we’re seeing when we can get him in….

4. E’s health has been AMAZING all summer(kinna herra, pft pft). He has gained 2 lbs in the last two months and is actually on the growth chart!!!!! He hasn’t been on it since 12 months! We now have his FPIES down to Milk, Soy, Oats and Rice. His belly seems to be overall regulated with small flares every once in a while.

5. In March, we finally had E evaluated by a neurologist at CHOP. They diagnosed him with Congenital Hemiplegia, which is a mild form of Cerebral Palsy. It wasn’t a shock, as we really had it figured out in the weeks leading up to the appointment. He does NOT have low tone, he has spacticity, weakness in his lower core and right side of his body.  He is currently getting PT once a week, is seeing the chiro once a week when we can afford it, and we just called to schedule an MRI today. The doctor said he needs to get a baseline and then we need to re-do the MRI every 2 years.

I have my hands full. But my heart is fuller. These boys have made my life whole. As much as I love my husband, we were so incomplete without them. Right now my life is insane between IEP meetings, therapies, orientations, playdates and advocacy meetings. I’m trying to stay afloat but realizing that I am truly so blessed to have them. God must have seen something in me to give them to me. And for that, I am grateful.

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Stop, rewind….. and PLAY!

That is my life. Life has been extremely full lately, in mostly good ways. One of the good things is that J has started a new sports class at our local Y, with much apprehension on my part…. and you know what? He LOVES it. He is absolutely exactly like the other kids. He has so much fun. He shows his strengths in every game that they play, and he WANTS to go! I was blown away. I think I need to follow his lead more often…

E has made amazing strides with his walking issues in PT. He is definitely finding ways to compensate for his low tone and is really strengthening all other parts of his body. He is happy and active, and currently not sick. He did go through a wicked bout of respiratory crap in which he ended up on orapred, and then a week later came down with a sinus infection and ended up on antibiotics. He’s doing great now though.

Both boys were struggling with their weight over the past few months. J all of the sudden showed symptoms of the SAME enterocolitis to dairy that E has. It was as simple as putting him on E’s diet, and not only has he gained back what he lost, but he has gained even more! He is eating so many new foods and really enjoying his food. E also rebounded from his three week long flare and gained over what he had lost as well. He has been cooking every single meal with me and it’s really motivating him to try new things. He eats much better when J is not around, so I try to actually do two separate dinners – me and E and J and dad. The dynamic just works for some reason.

So right now I’m pouring myself into research on the Gluten Free Casein Free diet. Both of my boys are already Casein free and have conditions that can be exacerbated by inflammatory foods such as Casein. So far they have taken beautifully to some foods I have introduced, and I am benefiting from it as well. So there’s my work in progress.

I’ll be back soon with updates.

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Remember when

You were a young adult, you stayed up way too late for whatever reason, and so you just called out of work the next day? I wish I could call out of my “work” tomorrow….

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Are you out there?

I am feeling incredibly inspired today. I don’t know what it is, but I know when I get that feeling, I just have to go with it. Maybe it’s reading inspiring stories about others. Maybe it’s looking at my two happy children and knowing how much they touch my heart that I want to spread it onto others.

Sometimes I sit back and wonder what I can do to help myself. What can I do to better myself? The first thing anyone will tell you is do things for yourself. That is very true. You need to make time for yourself. However, some people thrive mostly from doing things for others.

I ran into an old friend this week who is currently going through an extremely challenging time in her motherhood. She is blogging about it the whole way. We talked about how no battle is worth enduring if you cannot share it with others and help someone along the way. How very, very true for my life, at least.

If I am helping you by writing this blog, please let me know. If you have a child with Asperger’s, ADHD, Asthma, Allergies, Anxiety, any A, let me know. Just let me know that you are reading. A simple response with ……. will just let me know that you’re out there. That you are trucking along life’s bumpy road with me. That my words are bringing you some type of comfort.

Like I said, no battle is worth enduring without the love and support from others. So, are you out there? How can I help you and how can you help me?

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Ten reasons my life sucks right now

Ok, well it doesn’t SUCK. It’s just difficult.

1. Jonah is having a regression and being verbally abusive.
2. I am fatter than I’ve ever been.
3. Eli is looking like he may drop his nap soon.
4. It’s almost budget season at work.
5. Eli was officially diagnosed with a milk allergy today.
6. I just bought a TON of food for Eli that he can no longer eat. Like, yesterday. Hopefully Geoff will eat it.
7. I have four people on four different diets in this house: Me, low gluten, low dairy. Geoff, low sodium, low sugar. Eli, dairy-free, oat-free. Jonah, high fat, high carb.
8. My flex money ran out for doctor’s co-pays.
9. Both of my boys have now fallen tremendously in growth percentiles. At least Jonah’s height did not fall, but Eli’s did – due to his milk allergy and us stupidly thinking it was just a lactose intollerance.
10. Geoff isn’t the happiest at his job right now.

I’ll write a top ten reasons why my life is so wonderful. But, tomorrow.

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