Confessions of a Mom

Being a Mom is one of the most rewarding and challenging things Ive experienced, that any of us experience. All of us struggle  with things like, enough food, enough sleep, screen time blah blah blah...I realized that all parents struggle with their own battles everyday. But sometimes being the mom of a child with special needs can feel so lonely and bring me to places I don"t want to be. Confused? ya me too....

Yesterday was the last class of the session for Layla Rose and Anthony's gymnastics at WimGym. Parents and grandparents were invited to watch and the kids did fun activities, trampoline, beam etc. As usual it always started well, my little dragon can run super fast and does such a great job at the warm up...and I watch the clock because I know what is coming. as the minutes tick by I watch her and cheer every extra tick the clock takes . I look at the other spectators and they are smiling, pointing and gushing over the adorable kids and cuteness of the awkward tumbles, swings and jumps. I try not to pay attention or compare but easier said then done.

I look back at my Layla Rose and I see her being to struggle, to battle with what she knows she should do and the lack of ability to self regulate and I know what is coming.  Her coach tries to distract and redirect, but its about to go south. I go to the door and they let me in to help calm the situation.

So in front of all the smiling parents I enter the gym floor to calm and teach my child. I have to dig deep to try and teach her with an audience.To calm the shrieks and thrashing while eyes are on her and i can't help but feel judged. What are they thinking of my child? of me?  All the while wishing just for  one moment to be one of them.

 The moment passes, and I say my kid can do it, she can do this... I got this, I am super mom, and then she lets of a scream and all the kids look at her and I feel like crap again. I'm hoping the whole time that none of the other parents send their kids to camp and recognizes me, and I am jealous of the other parents in that moment and I feel like shit because I feel that way. I mean there are worse things and other parents would kill just to have this...

...this incredible kid, this sensitive soul and electric character. I love her with all my heart but sometimes it is so hard, and I want to feel just a little normal, just once. I want to send her to a birthday party and not have to worry what she will eat , to an activity that she can do, to kindergarten and not wonder how long it will last before I get called.

Being a special needs Mom, is like being a regular mom, we struggle, we question, love, we cherish, we hold them , we cuddle them. But there seems to be an extra layer to this, an extra layer to any Mom who has a non typical child, its a layer of loneliness and guilt. The guilt for feeling lonely and tired and for the milliseconds we periodically experience of wishing things could be different.

But there is also that layer of strength, the armor you put on everyday and say "my child can do anything" I will make it possible for her and feel the exploding pride when she does. The overflowing of emotion when she pedals her bike the first time, when she says Hi, my name is...when she talks to me with her eyes telling me things only I can truly understand. I know that my path is as it should be, but holy crap its not easy. I sincerely wish we could make everything more adaptable to her but we can't and so we march on wearing our armor , making the world a better place for her and kids like her.  There are no 2 ways about it, being a special needs mom is hard and they are worth it.

A chapter now closed

I am not even really sure where to start this post, its been so long since I've written but a lot has been going. Though my, our life is so full of amazing things, people and experiences it has been a tough six months for my little family. Its been hard because we've been dealing with a situation  at home that we've been largely silent about. To be honest, we've been partly silent because we wanted to wait until we had all the answers and partly because we didn't really know how to start the conversation.

So last August i began having some pretty sever symptoms of something being wrong, fatigue, headaches, nausea dizziness among other things. Anyways that's not important. So off to the doctor i went, and to many doctors since then. All this time...these passed six months we have been working to figure out what was wrong with me. One of the tests was a brain MRI at the end of last year and close to 10 000$ of blood tests( we ended up going public but were quoted that privately) during these tests several anomalies were found. Before we continue lets be clear I'm ok, nothing life threatening. but it has taken some time to get here, to know this. I've shared my journey superficially with a few of my closest friends  but not many. The long and the short of it is medically we are working on things and figuring out everything that needs to be tweaked in terms of my condition an progress is being made. but that's not the point of this  post.

For the last six months I've carried what is essentially a secret and it has weighed on me. there were a few weeks when we had no answers and some of the tests were to eliminate some more scary things. during that time you would be amazed at what you think of and what seems important. However now we know that i am ok and we are treating everything it is like an incredible weight has been lifted, one i didn't even know i was carrying until it was gone. At the same time I am exhausted, all this time worrying and thinking, you just don't ever have a moment of peace, because when all is quiet, your brain is not.

Why speak of it at all, you might be asking. Well its hard to say. I feel like since its mostly over now, i can breath and let it out. I have always been the type to wear it on my sleeve and I feel like i've been a little more impatient these past few months ( not that i have much to start with). Hopefully the next six months will bring a lot more relief as the treatments kick in. This forum is like a therapy session for me. I can get it out without having to answer a ton of questions. I find it an awkward  topic anyways and don't necessarily want to talk about it now that its mostly over.

Needles to say i am grateful for those who have helped me make it through the last while whether they knew it or not. I wont lie, I'm quite tired mentally but doing better and am back at the gym , playing hockey and slowly getting it together LOL We've got weddings, babies and vacations in the next year and lots of exciting things I can now look forward to without a cloud.

It's been awhile...

Well folks it has been quite awhile since I last wrote, life has been somewhat rock and roll these last few months. However I am slowly getting together and today something remarkable happened to me and it cannot go unshared. So in the next few days I will catch you all up on all things Mancini but first...today.

So the dragon has been going through so much lately, all kinds of tests and Dr. appointments ( the cause will be the subject of another post) and she can have some pretty intense behaviour both good and bad. So this afternoon after once again not napping we were playing in the base ment and she ask me to watch TV. I said no because I was saving her TV time for when the rain came (the sky was black) this set her off into the toddler tantrum of the century.

 At first I just figured it would be the 2 minute "I didn't get what i want" standard. But it went on longer than normal, she was looking at me while screaming at a piercing level. When i say screaming, I mean screaming to the point it actually hurt my ears. Jokes aside...it was intense. the whole episode took approximately 25 minutes. I was exhausted at the end, but  it wasn't just a tantrum. It was more than that , she lost control of herself and I could see in her eyes that it was more than she could handle, almost like her body took over control of her mind and she couldn't stop screaming. All the while this was going on I didn't lose it, I held her, calmed her, read to her, sang to her, until she was so tired she just sat in my lap hugging me and we rocked. I was feeling really happy that I was able to hold it together and see past the behavior. I've lost my patience before,,,oh yeah, I've had my moments. So all in all feeling ok.

Then it was over.

She went on her merry way and continued paying like nothing happened. about half an hour later She asked to go for a walk , super fun right. So we are all in the portique putting on our shoes to go and she takes my hand and says

"thank you for playing with me"

So i say

"It was fun I love playing"

Then She says "no mamma, ( takes my other hand so i look at her ) Thank you for playing with me"

I look at her, and i mean really look at her and I understand what she is trying to say to me. In her own way, she understood what happened in the basement. Whatsmore is that she understood that I didn't leave her, that I didn't get mad and that I loved her. In her little face I could see a profound understanding of the whole ordeal. It took my breath away.

I crouched down to make sure she understood me, and what I said had so many layers of meaning and I think she understood most of those layers, I said

"I will always play with you"

Great day.

Courage...Sexy...Strong

There are many things in life that I am proud of, and many things I would prefer to forget. But one of those things that I am proud of is what you are about to see in my blog. But if you are not an open and supportive spirit, just stop here and move on to something else. 

It took A LOT of courage for me to do this. 

As a woman who doesn’t meet the norm as to what is beautiful I have often doubted myself. I have never felt pretty ( in a social standard kinda way) . I mean I am confident no doubt in almost all aspects of my life, but I would say that image is definitely not one of them. But I am working on it. See even that statement is yucky…what does that mean working on it… you work on a house or a car until it is perfect, but how can you work on your body and make it perfect? The truth is you can’t. We can try to live a healthy lifestyle and be better version of ourselves, but it should be for us and not to meet some ridiculous standard. Because it isn’t true. The covers of magazines are fake, movie stars have TEAMS of people with the right clothes make up lighting and editing etc.

So to try and help myself see myself as beautiful I followed in the steps of my beautiful friend Tina and decided to do a boudoir shoot. Not to be in a calendar or anything but to try and believe in my own self. To believe in my beauty even if it was outside the lines. I wanted to look at myself and feel the same pride I do as when I lace up my skates. So made a few calls and found a kindred soul in a photographer who doesn’t believe in photoshoping the body wither. Booked the date…and began to panic

I told not a soul except three people who mean more to me then they know. My beautiful Gina, Tina and Nancy. We call ourselves the goddesses ( humble people that we are). Nancy who has been with me for every step of my transformation journey, who has kept my spirits up and pushed me to keep going is also my INCREDIBLE Zumba instructor. I told her about my incredible lack of sexiness and how I thought this shoot was going to FLOP!

She attempted to inspire me…I tried I really did, but I can’t do it. Then she said something in class that changed the way I thought. Nancy asked us when we had lost our sexuality? When did we stop being sexy or feel like it was wrong? To myself I said “ hey Nancy it’s pretty hard to loose what you never had” But then I kept thinking about it…

So I tried to be sexy….FAIL! It just didn’t happen.

The next class I looked at myself in the mirror while I was dancing and I said to myself…WTF…how do I still look like this?!? I mean I have been doing this for what feels like forever…UGH! I didn’t like what I saw. I felt Fat and Ugly…Slobbish really. Why do we say these things to ourselves?

Anyways I did the shoot…and it was AMAZING!! Isabella ( Ella Photography) came and made me feeling like a rock star.

I want to share them with you because sometimes I see my own doubts reflected in the faces of my friends, in the faces of the beautiful women who dance at Studio Benefit with me, who walk down the street whose posts are self-depreciating.

We are all beautiful, we are all sexy we and need to love our selves, find the courage to look at yourself, make eye contact with your soul and love yourself to being a better you.

I would never have had the courage to do this without you Nancy, Tina and Gina . Thank you my Goddesses!

Being a Mom is HARD!!

This was such a great weekend full of highs and lows but really eye opening about what it means to be a Mom. We did all kinds of activities this weekend, from building a gingerbread house, to swimming and gymnastics and saw some family etc. It was great, and Layla Rose is just doing great, her words are coming along and we are working on attention span yadayadayada...

So why is being a Mom hard if everything was so fun...let me explain

I have been against gymnastics since day one. Not because of the sport itself, it is beautiful to watch and those athletes are strong and dedicated. My problem is 2 fold, 1 is the body thing I have been sooooooo scared that she won't fit whatever body they need to wear those suits and what others would say about her. Naturally this stems from my ridiculous opinion of my own body and the struggle i have had and continue to have with  my body image. I wanted to save her from going through the nasty world of body image. the 2nd part is that I am afraid of the injuries she could have. Layla Rose is fearless that borders on dangerous, so my images of her pitching herslef off a beam or soemthing have always held me back.

then the fact that she loves it and is good at it came in... ugh

then the recommendation form her psychologist that she do it...double ugh

And so the internal battle begun...do I do what i feel is right and keep her engaged in other activities or do i go against my gut and follwo the what seems to be the natural flow...not easy. I REALLY don't want her to do gymnastics.

So after fighting it, I finally gave in and brought her to Wimgym in their munchkin program. She was all dressed up in her cute little outfit and away she went. Eric waited down stairs and i stayed with her. She was so good! LOL! she did it all, the bear crawl, the beam the whole nine yards YAY! SO then we switched so Eric could see it also and I went into the waiting room. and IT happened.

So I'm  sitting with my little chunky Buddha playing and 2 Mom's are talking. And they are CRITICIZING their own daughters bodies!! One is saying her daughter gains 7lbs every winter and she looks terrible. the otherone was saying how much she has to spend in new suits because she keeps gaining weight. I DAMN NEAR jumped on them!! Against my natural self i said nothing...the reason for that is it litterally dashed my joy of the moment. I was SO HAPPY that my child was in somehting she was good at, that I was wrong all this time about gymnastics. and then THAT. UGH!

SO as a Mom I sit here debating what to do...i mean she is so natural there, and yet those 2 morons just validated my original fear. I feel like I have no choice because Layla Rose needs every opportunity to build her confidence so no matter what life throws at her she can face it. But how can i protect her from harpies like that.

Being a Mom is hard...hard choices...tough calls... I can only hope to make the right ones

Oh Happy day!!

What an emotional day today was, we went through about a month or so of tests ( not all at the same time) to try and diagnose our beautiful Layla Rose and why she is not developing "normally". As a parent it is extremely draining, emotional, scary to think that your child will not have the same experiences as others, that she will have to go to a special school, or who will take care of her if something happens to me? Its nuts, nothing i write here will truly transmit those concerns or questions, and as many of you are parents you are each facing your own worries and concerns for your own children. That's what being a parent is and each of us are walking a journey that we never thought could be filled with such love and worry all at the same time. So as this all come to a head today was our "D" day. The results were in...we were going to label our child. It kind of felt like we were going to a fortune teller and she was going to layout Layla Rose's future for us.

Obviously that's not the case as anything can happen, but we were dreading the word AUTISM. Now i know many of you say well its not that bad, or there are worse things. Even worse is that I am trained to work with special needs kids and here I was fearing the diagnosis. Not because these beautiful children are pariahs, but because its not what i want for my own child. I want her to be happy and fit in , have friends and have a relatively "normal" future. I am almost ashamed to say these things, but who wouldn't want their child to be as "normal" as possible?

So there we are sitting in front of her and the first thing out of her mouth is that the dragon is NOT autistic...exhale. So, YAY! huge relief to us, then come the actual diagnosis which is a global developmental delay including speech and a sensitivity to over stimulation. I'll explain. GDD is a fancy way of saying that your child is not developing typically in multiple areas for a variety of reasons. For Layla Rose that includes some fine motor skills, social skill and basic life skills. Her language is obviously quite delayed  but is coming along.  So why is this good news? because it is not a life sentence, not for her anyway. Layla Rose has shown through the testing as well as her development that she CAN learn and is interested in learning. She is curious and inquisitive meaning that she will over time and with an enormous amount of time spent in stimulating her be able to develop into what I have no doubt will be a dynamic spitfire of a person. As parents and people who love her, we need to build her confidence, encourage her to socialize ( play date anyone?) and keep loving her no matter what! ( DUH how could you not!) Her early diagnosis makes intervention even more effective since they are at the age of absorbing everything. So for now She is getting all kinds of help in speech and behaviour. We are at the Mackay center starting in January, she has a wonderful therapist in her daycare and simply THE BEST day care educator int he whole world. seriously this woman is a SAINT. As for her over stimulation, well for those of you who know her, this is nothing new. She can't be thrust into new situations with loud noises and lots of people. We simply have to work on coping skills and slowly expose her to a world of new things.

We have a lot of work to do with her, but we feel blessed to have her in our life, as she teaches us to have patience and compassion and what it really means to connect with another person. She makes us better people and int he end better parents to her and Anthony. Ah our little dragon, who knew we could love something as much as we love her and Anthony. I just don't know what or who I would be if I didn't have my kids. Thank you universe for giving me these gifts and thank all of you who are walking this journey with us!

10 Months already!

Wow is october almost over YIKES! well today Anthoyn is 10 months old...it goes so fast holy shmoly! LOL! Lots going on at this time. but most important we have just finished all of Layla Rose's testing phew! and we await the results. This could take baout 4 weeks and then we will have an action plan of how to go about all of this. Either way knowing one way or the other what we are dealing with will be releaving, right now we just keep guessing and frankly its exhausting. So away we go and hopefully we will know where we are headed soon. In the mean time, she is talking much much more and depending on the day she is doing great in with other people in different settings. So a few more fun pics to tide you over :)