5p- | Lessons from my daughter

I tell you about Emily’s success, her achievements and how great she is.

That’s what I do!

I look at the positive side of almost everything… I say almost because my husband could tell you that when I have a grumpy moment, it sticks with me for a little bit before I can run through my happy list and get back to my positive self… Emily ruining my Guess flip flops at La Guardia airport making me walk barefoot at the Toronto airport was a “not funny” moment for me! I loved those over priced flip flops….!

What I struggle with is telling you about Emily’s struggles.

Well, let’s look at the conference last weekend. We arrived at the Hilton Huntington on Thursday mid-afternoon. We checked into our room and Emily got comfy.

We went down to register for the conference, walked around and waited for the welcome address.

I tried to smile and chat with other families. This is difficult for me so you can only imagine I’m not the best role model to teach her social skills but I try

We sat in the meeting room, met Rochelle than Adam, Donna and Rachel followed by Alex his little sister and his parents.

It was all going really well I thought until the microphone was tested to make sure everybody could hear the presenter…

That’s when it got bad.

Emily couldn’t stay there, too loud, too much this, too much that…. She needed out of that banquet room so badly.

I wanted to stay so Jon took her out. I thought they went back to the room but learned later that they stayed near by and slowly moved back closer to the room…

My husband is an amazing dad, he could have taken her back our room. It would have been much easier on him to do that but instead he worked with Emily. Helped her calm down and eventually return to the room.

After the welcome address, we had a new family orientation. I really wanted to stay for that and Emily was fine until 8pm came around… She knows her time and knew the new Big Time Rush movie was on so she wanted to go back to the room.

As with everything else, our world is Jon, Emily and I. When Emily can’t stay or doesn’t want to stay one of us needs to go with her, needs to be with her.

That night, Jon went back to the room with her so she could relax and watch her movie.

The next morning, she went happily to fun camp, we picked her up at lunch and got ready for our beach outing.

We had our swimsuits but decided to only dip our toes in the water…

Emily was ready to get back to the hotel before anyone else. We were supposed to be on the 2nd bus but left on the first bus. Emily was teary… She wanted back to the hotel and didn’t care about anything else…

I played her iPhone at the beach, tried to change her mind but that didn’t really work. We took the 1st bus back to the hotel and the ride was quite long. Emily tried to lay down on my lap to relax but that’s difficult at 5’7″ in a yellow school bus.

I made her sing, tried to entertain her with games on our phones but that didn’t work…

We poked her dad as he was napping on the seat in front of us. That provided maybe 5 minutes of entertainment.

I decided to try the music again and that worked till we got to the hotel. Once at the hotel we went to the pool.

They had a nice pool, we played there for maybe an hour. Emily relaxed and really enjoyed herself. She loves to play in water… She loves pools… The ocean is still not something she’s really attracted to.

We got out, showered and got ready for Rachel Coleman’s concert. We got all prettied up, woke up dad and walked to the room. The room was full and it was loud in there. In the hall, there was a teenager and a young adult in tears. They wanted to go in but couldn’t handle it.

Emily joined them, the sad face, the tears, the panicked look… She feeds off of others… Don’t get me wrong, she was completely overwhelmed by the crowd and the noise level in that room…. but the fact that she wasn’t the only one overwhelmed made it more difficult for us to help her overcome the feelings. We tried to talk to her, tried to calm her down but that didn’t work. We walked away and tried to go back but that wasn’t happening.

We sat on the couches away from the room and talked with other families for awhile than went to bed.

I don’t take pictures of Emily when her world is falling apart. I would hate for Jon to take pictures of me when I’m having a grumpy unhappy moment so I respect my daughter’s miserable moments… We give her some space, try to work with her in overcoming what’s happening to her but it doesn’t always work.

We’ve decided years ago to do our best to give Emily a great life… If it means missing a concert or if one of us has to miss a presentation to be with Emily that’s ok, we can live with that. We can brief each other on what happened… and we will continue…

Over the last 2 weeks, my husband, our daughter Emily and I traveled to New York City. For the first part of the trip, we played tourists and for the second part of the trip we attended the 5p- society yearly conference on Long Island.

Over the last 2 weeks, Emily played fashion model for me, I took over 800 pictures.

If you’ve read my blog before, you know that since Emily was diagnosed with Cri du chat syndrome, I have found reasons every year not to attend the conference.

I wanted to go but was scared to meet other kids like Emily. Actually, I was scared to meet some that would have been doing so much better than her and really scared to see the older kids, I was scared to get a glimpse into Emily’s future.

We are all differents, we make decisions and have to live with the consequences.

Now that I have been to the conference, do I believe I should have gone before…?

I don’t think so!

I am sure Emily would have enjoy herself in previous years but Jon and I….? I’m not sure.

I am glad we waited.

I am also really glad the parents of the little ones there over the last weekend didn’t wait.

That makes no sense I am sure but let me explain.

I now know who my daughter is, I didn’t compare her to the other teenagers or young adult presents. I looked for her in the little ones.

Was that wrong of me to do?

I don’t know!

I do know that I saw part of her in multiple kids. And for those of you that were there… I didn’t recognized her in the little ones that were walking around…

I recognized her in the tiny 2 year old that were in their parents arms but were not holding on to their parents… Emily was that tiny 18-24 months old with no back muscles to help her sit straight. No grasp to hold something and no knowledge that she should have held-on to us when in our arms.

She was that tiny girl with her arms folded against herself and her hand on her a cheek, fingers in her mouth… drooling all over herself.

I don’t have many pictures of her looking that way, I always tried to set her up as if she was sitting by herself or as if she was holding her bottle…

It took us so long to have the doctors agree to do some tests… 15 months before we had a diagnosis. During that time, my nephew who was 6 weeks older than Emily kept growing and learning new things while my baby achieved no milestone.

Those staged pictures helped me feel “normal”. Most pictures showing how different Emily was didn’t survived… they were destroyed.

The picture below took us forever to take. It showed Emily the way I saw her when in reality… she couldn’t sit on her own and didn’t sit up straight either.

Was I wrong to do that?

Maybe… but it felt right, it helped me get through the tough days.

So if you were at the conference and you saw me staring at your child… if you are the parent of one of the little walkers 🙂 I was admiring your child, admiring what early intervention has done for your family.

We had no therapies for the first 15 months as everything was “fine” with our daughter.

Once we got therapy, we had 1 hour a month with a PT and 1 hour a month with an OT.

We learned from them, took notes and went home to work with Emily. We lived away from family, we had no support or respite other than Monique… our angel, Emily’s babysitter.

I made an excel spreadsheet of everything we needed to do and track during the day. Emily had a binder following her to daycare. Monique worked with Emily as much as she could during the day, documented all they did and we completed at night.

The following morning we started a new page.

A month later we took the binder back with us to meet OT and PT.

When she was old enough, we added speech.

Jon and I were “it” for Emily. We still are although for the last 8 years or so, Jon’s parents have moved closer to us and Emily does have sleepovers there from time to time.

If you were at the conference and you saw me staring at your child who was that tiny little one… I was admiring a child who looks like my daughter did because I had never seen a child who looked like she did before. At some point, I wanted to ask if I could hold your babies because it seemed unreal to me that your babies reminded me of my baby…

It was a relief to see them, I wanted to tell you that Emily was just like your baby but felt out of place doing so. I didn’t want you to assume that her success and limitations would be similar for you as our kids are all differents. I didn’t want to give you false hopes or make you wish your kids would do better than mine…

I still have no idea how I could have just gone up to you and tell you how beautiful your babies were…

I should have just done it!

Maybe next time I will!