Family

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20, 40, 60 and GONE

The single most terrifying moment was about to be upon me.

My dad came over and whisked Lily and I away for a little bit of birthday shopping. Since Lily and I both have birthdays in December, it is easy to get them mixed up with Christmas. He makes sure there is a notable difference and it is becoming a wonderful little family tradition.

After braving the mall two weeks before Christmas, I discovered a little gem of a coat I had wanted for a long time. It was half off! Oh happy birthday to me! We had rented one of those little car strollers from the mall for Lily to enjoy but after a while she was getting bored. So I took her out and sat her in front of a mirror where she could chat with the cutest little girl I have ever known!

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My dad pulled out his wallet and began handing me money. I held out my hand, smiled at Lily and then looked at my dad ……for the count of three. He counted out 20’s and laid them in my open palm- 20, 40, 60… I looked back at Lily and she was GONE.

And I mean GONE. She had vanished. Suddenly the air was sucked out of me, my vision changed to a surreal view of the department store, my hackles raised as I scanned each and every living thing around me. SHE. WAS. GONE.

I hit the floor looking under all the clothing racks and my dad immediately ran the other direction looking for anyone carrying her off…

Frantic cannot begin to explain how I felt. I am actually in tears writing this experience right now (and it ended well). A surge of fury and fear raced through my body, changing me a little- my entire being was tingling. I noticed everything and nothing all at once. I felt like a giant and yet so powerless. As I was about to unleash a primal scream alerting everyone in the store as to my unbridled terror, when an old man touched my arm.

I will never forget the look in his eyes as he said, “He found her.” “Mama, he found her.” His eyes sparkled and I could feel his soul rejoice with the news he was chosen to deliver to me. 

Suddenly everything grew still in my mind and the world played a fuzzy background image to the sight of my dad with Lily on his shoulders.

As you would expect after having such intense emotions rack your body, mind, soul- I needed some release. I felt like I was vibrating.  Only now could I spare the energy and time to cry. And cry I did. After the last tear fell and the last of the terror shook free from my hand, I felt drained and my body went a little limp. My dad, a man who although is very sensitive and passionate, never cries, is never rattled. My dad was shaking. He was breathing heavy and he, like me, was not okay.

We took a moment to just remember how to breathe. Lily was making faces at herself in front of the mirror. She was back in her stroller and safe. SAFE. We collected our material finds and proceeded to check out and then onto home.

I never truly believed when people would say “It only takes a second.” For us it was “20, 40, 60 GONE”. My dad found her 30 yards away. She was having a ball crawling as fast as she could, enjoying her new found freedom.

I share this experience, at the risk of looking like a distracted, bad parent, because I was one, at least for that moment, and because for some, their ending of their story has no happy. We all make mistakes and I am forever grateful that mine wasn’t permanent and this story has a happy ending. Hug your children a little tighter and be safe during the insanity of your life. 🙂 Peace to you all.

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Anger Management?

Anger.

The very word contrives all sorts of images in my head from the very mild to the most violent. Anger is the unspoken emotion that we all feel but rarely feel comfortable and safe to discuss within our social circles. Becoming a parent forces you to confront things, like anger, that you may never have explored before and then in the same breath, expects an answer.

This was a much needed girls night in- wine and pjs and excellent company. Although we all come from varying backgrounds and have had very deifferent life experiences, we have so much common. The biggest thing we have in common is that we are all moms of toddlers. While some of us are veteran mothers and others are newbies (like myself)- we all appreciate the comfort in being amongst a group of people that simply understand that tired, half crazy look you don or the inappropiate yawn that occurs when someone is telling a story and the constant interuptions that steer you away from being a ‘good listener’.

As we sat and chatted about our own realities, our men, our daily responsibilities, we naturally also chatted about our toddlers. Soon we discovered that each one of us is being confronted with the same complex issue: hitting.  Suddenly our sweet children are embracing their inner monster and showing us a whole new side to their personality. The anger emotion is unfolding.

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With my daughter, I have observed her hitting for two reasons: 1) She hits for attention and 2) She hits when she is frustrated/angry.

The first was a rather simple fix for me- Upon holding her hands and looking her in the eyes, I would tell her in a calm but serious voice, “We do not hit.” or “No hitting.” I would watch the realization come over her eyes as she processed this information and saw the wheels turning as she thought what she should do instead. And naturally I offered her a solution- when you need mommy come over and use your voice and I will immediately address you. After a couple of trial and errors she and I nailed this one and within 3 days, she no longer hits to get my attention. (Mommy win! Yay!)

Feeling pretty confident in my discipline technique and very proud of my daughter, I moved on to address #2. Hitting when frustrated or angry. Hmmm. As she lifted her hand to strike me because she was upset over my unwillingness to play the game her way- I proceeded with the above measures -only when it came to telling her how to express her anger differently, I drew a blank.

Suddenly I realized that I had no idea how to appropiately express one’s anger. I was never taught how to express anger or frustration. I grew up feeling as though I wasn’t allowed to be angry. Anger was bad. You were punished for hitting but never given an outlet for the anger/frustration behind the hitting. As I discussed this revelation within my circle of friends, it quickly became apparant that none of us felt we had ever been taught how to express our anger. Now, I am not trying to take a stab at my parents, here, because I have no doubt that they probably weren’t taught either. So my question is- why not? Are we, as a society, so afraid of anger that we cannot allow it to exist even for a fraction of a second? Watching your child hit someone can be a frightful experience for a parent and of course you want to (and should) correct that behavior….but how?

I believe there is a difference between behavior and state of mind. There is a difference between discipline and punishment. Obviously my goal is to stop the behavior of hitting but to really accomplish that, I feel I must also change the state of mind behind it: Aggression born from anger. So once again I must face the question- how should one properly express their anger?

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As my friends and I spoke, we tossed around several discipline theories and debated different schools of thought. And while I definately have my own opinions and thoughts on what I consider to be appropiate and inapporiate, I found it very enlightening to listen in.

Naturally the method of spanking was brought up, as most of us received spankings as punishment when growing up.  One friend had an interesting idea that spankings are a good form of punishment so long as they were delivered appropiately. She stated that a spanking should not occur immediately after the event and should not be done when the parent was upset. This gave me pause- I tried to imagine myself in a calm and loving state of mind, spanking my child in response to her bad behavior. I couldn’t manage to do it. The very act of hitting, to me, was only born from a state of frustration and anger, not calmness and definately not love. I am looking to discipline my child, not punish.

The one time I ever slapped my daughters hand was because I was irritated and angry that she kept hitting me. She was hitting me because she was mad at me and I hit her back because I was mad at her…..for hitting me… I refer to this event as one of my bigger mommy fails.

No, spankings are not a technique I am qualified to use. Next.

So what about time-outs? I like the idea of a time-out. To remove oneself from the moment of anger so you can calm down and begin to relax. However do very young children have the comprehension ability to actually do that? Or do they simply feel like I did when I was little, ‘I got angry then I got in trouble’. It is my understanding that utilizing a time-out effectively includes not only separating the child from the activities of the room for a brief period of time but also to allow and encourage a reconcilaition once its over. All primates, even non-human primates exhibit a need for conflict resolution. Or rather, the need to reconcile with the one they got into trouble with.

I have attempted a time out with Lily 3 times for hitting. I warned her that if she hit me again, she will have a time-out. She hit me again and I picked her up and put her in a designated spot a few feet away from anything else. I told her she must stay there and then I stood nearby with one eye on the clock and the other on her. I observed her getting quiet, perhaps thinking about what is happening, perhaps not. After about 30 seconds, I knelt down and took her hands and repeated to her that we do not hit people. Then I offered her reconciliation- a giant hug. Although I felt that she understood on some level that she was in time out for misbehaving, I didn’t really feel as though I addressed how to properly express her anger.

I appreciate the art of the time out but it still fell short for how to teach her to properly express her anger. Next.

The only other parenting theory that was touched on was that of purposeful ignoring of the behavior. Okay, I get it- even negative attention is attention and so if you give your child absolutely no attention for an unwanted behavior then they will stop it- right? Although that could herald a good response for hitting for attention but does not aid me in helping her with anger. Next.

After conversing within my circle of friends, I held my thoughts on my dilemna. How to teach my children to properly express their anger. After some long meditative moments on this, it dawned on me……what is anger? Anger is an emotion that fills one with such powerful negative energy that one is compelled to forcefully expel it. Not expelling it can lead to destruction (either internal or external) and expelling it in a form of aggression can lead to big trouble. What about providing a physical way to expel this energy that does not cause harm or fuel aggression? What about breathing? A simple thing, taking a breath, expelling a breath. Perhaps it is a silly idea from an overtired, over anayltical new parent but then again, maybe it could work.

I have begun to teach my daughter (and when he gets older my son too) that when I see her getting angry to take a big breath and forcefully blow it out. I guide her through that breath to release the anger and focus on changing her state of emotion. Since I have begun this, I have noticed that when Lily begins to get frustrated or upset, she will (most of the time) attempt to calm herself down. Sometimes by taking that breath, sometimes by getting very still and quiet and sometimes turning away, briefly, from the source of her frustration. I am struck by how grown up she appears to me as I watch her do this. Now, she does still hit out of anger, but it is not often and is beginning to fade as I feel I have finally begun to answer my question of how to teach her to express her anger. As she gets older and is able to communicate verbally, it is my intention to guide her to using her words to help express her emotions. Until that time, I will build on the breath.

A few notes from the bench: I am not citing any sources or claiming to be an expert on discipline because I view myself as an educated but new parent. This blog is made up of entirely my own opinions, experiences and reflections. I choose what is right for my family within the morals and values I serve to uphold. I believe that children should be respected and diciplined, not punished. I view myself as my childrens’ teacher and caregiver, not their owner and master. They are uniquely them and I am both challenged and blessed to prepare them to take on their life.

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DSAM Day 31: Lilyisms

21 Lilyisms:

1. Have faith that God know what He is doing (even if you aren’t so sure)

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2. Be your own advocate.

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3. Everyone needs someone to cuddle with.

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4. Whenever you can, choose happiness over sorrow.

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5. Try not to be too sensitive, most people don’t mean to offend.

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6. Naps are better with a furry friend.

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7. Be bold, be a rock n roll princess.

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8. Don’t be afraid to rediscover the “old ways” of doing things, sometimes they are better.

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9. Peace is found when you can find comfort wherever you are.

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10. Explore your inner faye, it’s worth it.

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11. When in doubt, pinky out!

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12. Don’t be afraid to make a mess- sometimes that’s the best part!

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13. Always have an escape plan.

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14. Dare to stand up and feel the wind in your face.

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15. All food tastes better when made in a faerie kitchen.

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16. Sometimes the best toy is your imagination.

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17. When you need to rest your head, the only thing better than a pilow, is your dad!

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18. Make a funny face every day, you wll feel better.

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19. Hugs make souls smile.

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20. There is nothing wrong with needing a moment to warm up to a situation.

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21. Some color outside the box, others color anywhere they please.

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Yes, there is something about Lily that draws people in.  Lily won’t need to spend countless hours studying eastern philosophies or pay top dollar for spiritual retreats to find her inner peace- she already has it. Everyone can sense it about her- everyone wants that for themselves. I want that. I strive to attain and hold onto what Lily has naturally. I believe that life is made up of lessons that serve to enhance my soul- Lily  holds my greatest and most sacred lesson. I am honored to receive it. I am beyond grateful to be her mother.

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DSAM Day 26: What I didn’t know I didn’t know

We, as humans, know what we know. We also know what we don’t know. But there is a vast array of things out there that we don’t know, we don’t know.

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Becoming a mother changed me. 

I didn’t know I didn’t know that being a mother would be the worst thing I could ever do to myself.

I am now capable of unspeakable thoughts. My mind has opened up a corner of indescribable fury. The very thought of anyone hurting a child, especially my own, sends my heart to this dark, once unknown place of wrath. I find myself equally mortified and pleased with my new found abilities. 

I have a never ending wealth of tears that bubble out of nowhere and fill oceans without breaking a sweat.

I can tap into a level of worry and anxiety that would intice the most veteran psychiatrists to dust off their research hats and sharpen their pencils.

I can experience fear so vivdly paralyzing that I can make my body go completely numb.

I didn’t know that I didn’t know what love is.

I didn’t know that I could fall in love with a person I had never met, never spoken to, never seen.

I didn’t know that I would be willing to die for someone I barely knew.

i didn’t know that I could be so vulnerable yet so brave for another person.

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I didn’t know I didn’t know God

I didn’t know that God could teach me how to endure pain in such a painless way.

I didn’t know that God trusted me to be a care taker to one of His most precious gifts.

I didn’t know that God had guided me on a path so intricately woven with blessings and magick.

I didn’t know I didn’t know that I always wanted to be Lilys’ mother

I didn’t know it would be so natural and so easy to become an advcate for my child.

I didn’t know that I wouldn’t care about my child’s diagnosis.

I didn’t know that even in the worst moments, I would tell God thank you for letting me be this little girls mother.

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I didn’t know I didn’t know about Down syndrome

I didn’t know that I could look at my daughter and not see Down syndrome.

I didn’t know I would feel lucky that my daughter ‘only has Down syndrome’.

I didn’t know I would forget she had Down syndrome.

Once you begin to learn the things that you didn’t know, you are forever altered, locked in a state of awareness that you can never truly turn away from. Since becoming a mother, I have awakened a whole new self and although I sometimes feel as though I live in a half-terrified state of mind, I can honestly say that my life is more vivd and whimsical and joyful than I could have imagined. Who knew?

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DSAM Day 30: Stop It

Everyone has there own little list of things that irk them. Some call it their “Pet Peeve” list. James and I refer to ours as a “Stop It” list. Some items may surprise you!

” God only gives special kids to special parents.”

IMG_4705 What does this mean really? Who gets to define “special”?  Is the mother of a normal kid who is sitting in an uncomfortable hospital chair, half starved because she forgot to eat in her worry for her son who was admitted to the hospital for a high fever- not special? Is the father who comes home from work and immediately seeks out his normal children to play with before reading them stories and staying up late to plan a fabulous family weekend – not special? We are not special.We are parents. Now that being said, I do think we are pretty awesome parents but no different than any other good parent.

“They are such a pleasure.” “Those people are always a joy. “Your daughter is so cute, I just love them.”

Who exactly are they? Is this the same they as in “They are always watching you?” or maybe “They are gonna get you?” If anyone were to speak this way about a race of people, they would be considered racist. Our daughter is an individual, not a they. Unfortunately, such sweet compliments drown in very poor phrasing.

“Down syndrome is the greatest thing that ever happened to me.”

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 I have heard some parents express this sentiment. And while at first I was taken aback, I do believe I know what they are trying to say. My life has changed dramatically since becoming a mother, but becoming Lily’s mother has brought me opportunities that otherwise would not have existed. Opportunities of friendship, creativity, advocacy and confrontation. No, I do not believe that Down Syndrome is the greatest thing that has ever happened to me and truth be told I would take it away or “cure” Lily from it in a heartbeat if I could. I do believe that having my children and my husband are the greatest things that have ever happened to me.

“She will do things in her own time.”

This statement gets thrown around quite a bit when people don’t know what to say or don’t feel like they can help. Although I understand that and yes it is always good to be given perspective, that is not at all what I need to hear. Of course all people will do things in their own time, however sometimes they need a little help. Sometimes the parent who is feeling guilty or inadequate because their child is delayed, needs a little help. This statement actually makes me feel even worse for worrying about it. What would be so much better here would be a statement of reassurance that I’m doing a good job and compassion for my feelings.

“I have to go deal with my children.”

We hear it all the time, “Sorry I have to go deal with my child.” or “How do I handle my child?” Excuse me? Take a quick moment and reflect on what you are saying. Children aren’t things that need ‘handling’ or to be ‘dealt with’. This is so disrespectful and degrading to our children. They are not property or a chore on a list, they are little human beings who are much more deserving than something one must ‘deal with’. We realize that many people don’t think about what they say, but perhaps they should. I imagine most adults would be mortified if they knew people thought of them as something they must ‘deal with.’

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“Staring at my children.”

We see you staring at our daughter, trying to figure out whats wrong with her. We see you staring at our son trying to figure out if there is anything wrong with him. Finally we see you staring at us. Sometimes you look at us with pity, sometimes with admiration and sometimes with embarassment. To you we simply say, Stop It! Our joyful presence should announce to you that we are approachable. Come say hello or move along please,

“How old is she?” “Oh”

Yeah… our daughter is smaller than yours. Our daughter is not abe to do all the things your child of the same age can do. We are fully aware of the difference between our children and are not entering a competition with you so please do not respond with such a sorrow filled exclamation. Do we look sorrowful? No.

“It’s okay, my child didn’t (walk/talk/dance/sing/snore/whatever else) until they were much older too.”

First problem: Maybe it is just us but this sounds like pity. Pity used to be a wonderful expression of sympathy but in todays world it has taken on a whole different tone. Being pitied evokes immediate irritation and sometimes anger. For us, we just don’t get it. Why pity us? We are one of the more blessed familes we know. Second problem: It is NOT the same. I am sorry but it’s not and it’s okay that it’s not the same. We don’t have to walk the same path to show one another empathy. Please stop comparing your typical child to mine.

“You can’t make them do it.”

What does this comment want from us? We are intelligent enough to understand that you cannot make someone do something they either do not want or cannot do. Was this even up for debate? Are you telling us this because you feared we had forgotten this concept? You are right, you can’t make them do it. But you can help motivate them, influence them, give them the confidence they need and so on and so on.. If you truly are wanting to help, then a different, more thoughtful response would be greatly appreciated.

So there you all go, our Stop It list!  This was an interesting write – I hope this post finds you in good humor. If it doesn’t then may we suggest you just Stop It! Lol 🙂

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DSAM Day 24: Becoming a Big Sister

November 2, 2012:

In the midst of closing on our very first home, moving out of my grandmothers’ home and getting used to a pre-toddler who can crawl everywhere…..I had lost track of my cycle and realized with a heart thumping moment that I was 2 days late..

2 days late equaled 4 weeks pregnant with baby #2! Lulu was gonna be a big sister!!

 Now, of course she had no idea what I was telling her but was laughing and smiling right along with me.

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As the first trimester set in, so did the fatigue and sickness. Lily seemed to enjoy the extra snuggle time she was getting as I began to cuddle up with her and take our daily naps together.

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The second trimester brought the baby bump and another oportunity to share the news with Lily. Little did Ozzy know, but at only 20 weeks gestational age, he was already teaching his big sis things. She learned “belly” by lifting up my shirt and playing with my obnoxious looking navel and patting my enormous tummy. At this time I began to use the word “brother”. And soon Lily was proudly pointing to, patting and even hugging my belly every time I asked her, “Where is your brother?”

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But as the weeks flew by I began to wonder, how do I prepare a 1 year old for a new sibling?

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Taking some advice from Lily’s various therapists, I bought Lily a baby doll. (This was a big deal to me because I am secretly a little afraid of baby dolls- let’s just say I have a little paranormal trauma history involving dolls I still need to work through!) After picking out a baby doll that was small enough for Lily to be able to carry and not too creepy looking, I presented Lily with her first baby. She LOVED it! For about a month….then she was over it and on to other activities. So I began to use the doll to represent having a baby in my arms while playing with Lily. I also had Lily practice waiting for things and even delayed my response to her in attempt to simulate what I guessed it would be like for her while I was changing Oz, nuring Oz, etc.

Towards the end of my third trimester, we were both sick of the belly. I began to be physically incapable of playing on the floor with Lily anymore, I was too big to cuddle with her on the couch, I was in a lot of pain and was very tired. The energy in the home was thick with anticpation and everyone felt it. Lily began acting out a little- she would get frustrated with me and sometimes prefer to play with daddy over me. Her emotions intensified and she began whining and fake crying followed also by real crying sometimes.

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The long awaited, blissful moment arrived and little Oz joined the world and our family. While waiting to meet my son, lying on the operating table, I had a terrifying thought- What if I have totally screwed over Lily by having another child?

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I know, I know, it was a little late, lol! But the truth was and is: Yes, yes I did screw her over a little bit. She will no longer reign as the end all be all in the house, she will now find herself having to share everything she knows and holds dear. Of course she will also now have a little brother to play with, confide in, gather support from, and love.

The night Oz was born, James and I decided to have Lily come up to the hospital to meet him right away. You see, when I left our home, Lily stayed behind with my grandmother (Gma)- I was in pain and hadn’t felt well all day so I know Lily was worried. Also, I had never spent even one night away from my little girl and was very nervous about how she would handle it. My mother, brother and step-father brought Lily up to the hospital.

I made sure that I wasn’t holding Oz when Lily first entered my recovery room. I knew I probably looked funny with all the wires and hospital bed and noises. I knew Lily would probably have some memory of her time spent in the hospital when she had pnemonia and the multiple blood tests and other medical treatments she has endured. I wasn’t prepared for how I would feel when I first laid eyes on her- I wanted to grab her and kiss her and tell her how much I love her and how that although our lives have changed, my love for her has not. The look in her eyes when she saw me, made me sad. She was nervous, unsettled. I made them set her in bed with me and we hugged and kissed. Then I began to talk to her about her little brother and how mommy was fine. I was so overjoyed to have both of my children with me that it proved difficult to hold back tears.

My mother was holding Oz when Lily first laid eyes on him. Her eyes lit up and she smiled a smile that made most of my worries dissipate. However as soon as she saw daddy holding Oz and then me- her expression changed to one of concern. It was almost as if she said “Hmmmm….I don’t know about this….”

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I missed her terribly while I was at the hospital but enjoyed getting to know my little man and rest up before the realities of being a mommy of two came at me full force. Oz and I came home on Sunday. Daddy and Lily picked us up and on the drive home, Lily began to break down. The rest of that day was filled with tears. It was like all of the emotional stress the last few days had been for her suddenly poured out of her. I empathized with her as it had been so hard on me to be away from her.

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After that one day, Lily was ready to explore her new role as a big sister! To this day she gets more and more amazing- she gives Oz his pacifier, wipes his mouth, pats his back, gives him hugs and kisses, even rocks him in his carseat and holds up toys for him to see!

She has re-discovered her baby doll now too- she mimics my mothering and I must say she is a very good mommy! Since Oz has been born she has re-discovered boobies! She knows where hers are and will nurse her baby doll when I nurse Oz. Sometimes she brings her baby to me to nurse and when she gets upset she will lay her face on my boob (not entirely sure what to do after that – because she doesn’t remember nursing). All in all it has been so touching and heart warming to see both of my children loving one another.

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Some people question whether or not it is fair to the other siblings in the house when you have a child with special needs. I have even heard people suggest maybe I should refrain from having more children because they wouldn’t get as much attention as Lily because she is special needs and will be more time consuming. To them I cry BULLSHIT.

I realize I am blessed because Lily has no major medical problems. It is true, medical problems take up a lot of time, time away from everything else in your life. But so do newborns….

The arguement that a child with special needs will take precedent over everyone else in the house and therefore take away from other children is probably a more subjective discussion.

In our household, having Lily has made James and I a much stronger couple and much closer. Lily does not take away from our relationship any more than having any child would. Now we have only been a family of 4 for a few months now but currently, Oz is at a stage of much higher maintenance than Lily- he has higher needs and therefore tends to dominate activities right now. But that will change….and then change back….and so on and so forth. See, it remains my belief that when parents choose to add another child to their family, at any given time one child may tip the balance to them.

I do believe that a child with Down syndrome benefits greatly from a having a sibling. The instinctual need to compete for resources is strong in siblings and can serve as an excellent motivator for them to keep trying, keep going. Oz will help motivate Lily to learn and try new things – maybe she won’t be as delayed? and in turn she will inspire him. Of course they will also drive each other crazy and argue and all of the other ‘fun’ stuff that goes with having a sibling (especially close in age).

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Oz loves Lily- he lights up whenever she comes near him. His first laugh was because of her. He will be different because of Lily. He will have advantages others do not, He will know pure joy, pure love. He will have empathy and sensitivity and tolerance. He won’t  have to learn this when he gets older, he will BE this as he grows up. I am not saying he won’t struggle – the first time some kid calls his sister a name or whenever he hears the word ‘retarded’ his heart may break a little. So yes, his journey may be a little different because of his sister, because of Down syndrome but it will still be his journey, his life.

I believe one of the best gifts I can give my children is one another. And who knows? We may just sprinkle in another sibling in the future to add to the joy of our little family!

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I Am….

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We are engagingly looking at a statue when I see her staring hard at my daughter. I look back at her and she quickly looks away.

He stares at me while I politely decline to sign the waiver for my daughter’s photograph to be used in an online publication. Other parents tilt their heads my direction.

They smile with sympathetic eyes while I am enjoying playing with my daughter.

I am crying while I am driving because the music on the radio will disguise the sound so my children don’t hear and get upset. I am not sure if I am sad, stressed, tired or frustrated but the tears don’t discriminate.

I am screaming for joy as I sweat through my shirt, walking in the sun for 20 minutes in a crouched position holding my daughters hands because she suddenly wants to practice walking.

I am on my knees begging God for strength and to be a better mother.

I am allowing myself to be vulnerable to complete strangers to hopefully gain a little insight as to how to better help my daughter.

I am constantly thinking, reading, analyzing and observing every thing. No task is mundane, all must be thoughtful.

I am on a first name basis with and can tell you all the good doctors in various specialities in town.

I am daringly hopeful when I hear the latest research discovery that may help my daughter.

I am awake in bed thanking God that He allows me to be this little girl’s mother, even though I may feel like I am not good enough.

I am a mother to a special needs child.

God didn’t make me more special or stronger than you and He definitely did not give me super powers. But He did give me a daughter and now a son that I will do anything for.

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December Leftovers Dedication

I started blogging because candy crush got too hard.

Just kidding. I have dabbled with writing for years. I have even been published a couple of times and won poetry contests. But I didn’t really begin to feel inspired until I met an amazing group of women.

I joined an app when I became pregnant with Lily. This app tracked my pregnancy, gave me helpful, and sometimes silly advice, and connected me with other women all due in December from all over the world.

My daughter was born in December 2011 and I am still connected to these amazing women. Some of us have gotten married, gotten divorced, had another child, graduated school and even started their own business. But all of us have remained a strong support network for one another.

There are not many safe zones in life where you can vent honestly and vulnerably to another person but I have one. I am one of the lucky ones. This group of women is unlike any other group I have ever experienced. They are able to respectfully disagree, offer you a wider perspective, help you think clearly about important desicions, and guide you to be a better you. There is no ”mob mentality’ here. They do not tell  you just what you want to hear but what you need to hear. We are a diverse group and therin lies diverse opinions on parenting and relationships- but it’s okay. It’s okay because none of us think we are superior to any one else therefore we are free to debate ideas without judgement, without creating an unpleasant environment. How beautiful is that?

These women pooled their resources and saved my family from despair last Christmas and have since done the same for other individuals in need. Many of us have not had the chance to meet in person but several of us phone, text and skype one another. Our children know each other as ‘cousins’. For those out of the loop, it may appear as a crazy delusion that a hundred plus women scattered all over the world can be closer to one another than some family members…but it is true.

I owe this blog in large part due to this astonishing gaggle of girls. Their constant flow of support and encouragement has given me the incentive to make my writings and ramblings public. Thank you fellow mommies, women and friends for you all as individuals and as a group have touched my heart and imprinted my family in ways I cannot explain. I must admit I am having a ball sharing my world in writing. The journey of my life has always taken me to interesting places and my current adventures in motherhood have yet to disappoint. I love you all and hope to keep you close throughout our shared travels in motherhood, womanhood and friendship.

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DELAYED DELAYED DELAYED

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Whether you are a new parent or repeat parent, you will find yourself getting caught up in the excitement of your childs’ milestone achievements. You celebrate all their firsts. You anticipate their next accomplishment and try and wait for it as patiently as you can. Because as they meet each one, two things happen: 1. We know they are okay, they are ‘normal’ and 2. They get more and more fun and beginning turning into little people, not babies. Everything is wonderful until the word DELAYED enters your world.

Delayed is a scary word followed by lots of unknowns. Some things you don’t even know that you don’t know. If you are a parent of a child that has DS, then this was one of the first words you heard about your child.

We were told that Lily will be delayed in motor, speech and cognitive skills. As she accomplished each early milestone, we celebrated just as any parent. Lily was on time for all of her early milestones (rolling over, smiling, laughing, sitting up, babbling, etc). When she was learning to crawl, we got our first glimpse of how hard it seemed for her to learn it. And then how she had to practice extra hard to get the strength to go very far. So when she first crawled across the room, we celebrated hard, like she just cured cancer kind of celebration.

We felt good, Lily felt good, life was good. Her therapists all said she was developing on time and even a little ahead of schedule on her cognitive and speech abilities. Then suddenly everything changed.

As Lily was learning to cruise and preparing to take her first steps- we notice that she had plateaued, meaning she hadn’t made any real progress in many months. She had lost her motivation somewhere. Now, I will say here that we knew she would be delayed in walking at least by a little bit. They consider one delayed if not walking by 18 months old. But she had been doing so well, we weren’t prepared for what a delay would be like for her and for us.

My first glimpse into how a delay could affect my daughter, literally broke my heart. Since almost all of Lilys’ friends are walking, she can no longer keep up with them. There came a day when she was attending a party with some of her walking friends and once they took off outside to play, Lily was stuck playing alone- the look on her face when all her friends left and she realized that she couldn’t keep up with them, would make any mother’s heart ache. Since that incident and others like it, she has lost her confidence around others. My sweet, social little girl is now a shy, insecure one.

DELAYED. This word looks and feels so different to me now. Now I understand what this word can mean. Lily will walk and do all the things others can and sometimes she will be on time, or even ahead and she will most likely be delayed too.

Walking is so hard for her, not because she can’t do it but because she is scared to walk, scared to fall. We are working very hard to give her the security and confidence to achieve her desire. As parents, that is part of our sacred duty. No parent wants to see their child struggle or feel defeated, but we all will. Maybe as a special needs’ parent, we just see it earlier than others but struggles are a part of everyone’s life.

Celebrate your children’s strengths and encourage them through their weaknesses. You can bet we will be celebrating loud and proud when Lily takes her first brave steps!