Feelings

 As a I sat rocking with Nathan last night I found myself singing and caressing his little head. At first, I was happy because I realized that I could comfort and give my child the security he needed. He wanted me and cried for me when I put him to bed, so I picked him up and cuddled with him. My little man is entirely dependent on me for everything and has absolute trust in me. It's a good feeling knowing someone feels like that about you. While rocking with him, I then started to weep, the weep turned into a cry and then I just couldn't stop. My feelings and thoughts took me right back to the day he was born. I got mad. I'm still so upset... I thought I had gotten over it and moved on but I don't think I'll ever get passed this. I was fooling myself. On July 17th, 2006, Nathan and I almost moved on to the other side and sometimes I wonder why we didn't? What is it that we have to accomplish here? What's our purpose?

I don't know what it is that I'm suppose to do but I will tell you that since that morning, my life has changed completely. It's changed forever and the hardship is only going to get worse.

Everyday I mourn the "normal" baby I thought I was carrying in my belly. That will never go away. Please don't tell me it will because I know it will not.  Would I change things? Absolutely, in a second I would change things. I would want a normal healthy Nathan. I'm not going to feel badly for saying that either.

Every day that I see a child that is two, I am reminded of what could have been. My heart aches when I see children eating and indulging in cakes and yummy treats, because eating those treats through a feeding tube defeats the purpose of having treats. Why can't my son enjoy treats like everyone else?

So here it is. I'm not going to sugar coat it. It's ugly and that's just how it is:

RTS SUCKS!!!! You hear me? It sucks.

Unless you have a child with this you can't possibly begin to imagine what it's like, so do me a favour and don't even try and for God's sake quit putting me on a freakin' pedestal!

I don't deserve it. I'm only doing what a mother should do and that's love her child unconditionally. My child has needs and it's my job to get up everyday and make sure his needs are met and that I love him and help him in anyway I can each and everyday.

I'm allowed to be sad. I'm allowed to be angry and I'm allowed to wish that my son wasn't like this. I don't need anti-depressants, I don't need counseling (talking to someone who has no clue what RTS is isn't going to help me because they won't get it and I really don't have the time or the energy to try to explain it to them!)- the reality is that this is hard. It's hard on me, it's hard on my marriage, it's hard on my daughter. 

Nathan will not outgrow it; ever!

Every day I'll have to fight for him because no one else will. 

Every day I'll have to continue dealing with the reality that he may never eat orally.

Every day I may never hear my son say, "Mama" or "I Love you."

Every day I will continue to hurt and mourn the loss of my "normal" baby.  

He wasn't supposed to be like this. This wasn't supposed to happen.

I'm really pissed off about this!

To Janet:

You have been my rock through all of this and you continue to be there for me and my family! I could never have made it this far without you and Matt. I love you both so very much. You stood by me in my hardest days. You cried with me, you worried with me, but most importantly you listened when I needed an ear. You never treated us any differently and you never treated Nathan like a special needs child and for that I can't thank you enough. He's just another kid to you and that's the best gift anyone can give our family. Love and acceptance when I perhaps wasn't feeling it.

To Janna:

You too have been my rock. Learning to care for Nathan when everyone else seemed afraid. Calling and checking in on us when you hadn't heard from us in a few days and just being the friend that you are. Thank you

To my RTS family: You truly get it. You are walking in my shoes everyday and you struggle alongside me. You feel my happiness and my pain. We worry together and laugh together. THANK GOD for the Internet. I can't imagine my life without you in it. You are my support group and I love you.

 

Sibblings have a lot in common too

Will and Nathan have a lot in common, they both have older sisters who also have a lot in common. Here's some more examples of what I mean:

 

In 2007 Caroline was Tinkerbell for Halloween, so was Alyssa, she however was missing her sidekick.

Both Alyssa and Caroline met princesses. 

They both like diving into the pool.

They love their goggles.

Separated at birth part 2

In part 1, I said the boys were alike in many ways. 

Here are some examples:

They drive the same cars, just different colours, like their hair!

Will has Mr. Cow (chews on nose)  Nathan has Bunny Bear (chews the nose too)

Myssie found a replacement cow, we found a replacement bunny bear

Won't nap in the afternoon  so they fall asleep on the floor.

Or at feeding time

Is this cute or what?

Separated at birth

The past few months I have been following my friend Myssie's blog. I simply can't get over how much our sons not only look alike but act alike and just how much our families have in common.  It's unbelievable. I did a photo comparison! Nathan and Will could be twins separated at birth. 

The facial resemblance is scary

Do you see what I'm saying here? The only difference is hair colour.

but wait there is more ... (part 2 coming soon)

Christmas Eve traditions

On Christmas Eve, we have our family night. Just the 4 of us and no one else. We have a nice dinner and chat and just make a point of enjoying ourselves. After dinner, Alyssa and Nathan get to open a small present from mom and dad because it's so hard to wait for Santa sometimes. We then get into our PJ's and pick a Christmas movie to watch. Of course popcorn and hot chocolate for all.  What will we watch tonight... Maybe the grinch (Cartoon version)or a Charlie Brown Christmas for the kids and then Sean and I will settle and watch Scrooged after the kids go to bed. Sit with our hot drinks, by our warm fire in the glow on the Christmas tree and enjoy a bit of a date night.

Truthfully, we are both more excited than the kids about tomorrow, because watching them on Christmas morning is the best gift we have.

Merry Christmas to all of you!

What are your traditions?

Snow Christmas, like a WhIte Christmas

Victoria hasn't had a White Christmas since 1971.  It's hit and it's hit hard.  It's been great for playing in but not so much for driving or getting to work in.  Today the kids and I went and did some last minute shopping but it wasn't easy to get around in. We did manage and it was nice to come in a have some Hot chocolate after.

After several attempts outside, Nathan discovers that sledding with Alyssa really isn't so bad after all.

Did we mention it was cold here in Canada. We're going to build our Igloo now!

Nathan wasn't too concerned about his sports utility vehicle, he can get through anything, as long as mommy is pushing.

Okay so here's the story... a month ago I finally got around to getting the bumper on our Nissan X-Trail (like a Honda CRV, these weren't sold in the USA) fixed.  I had my vehicle parked at work and for those of you who don't know, I am a Driver Examiner here at the Driver Licensing Centre and my vehicle was hit at work - oh yah, don't even get me started.... Anyway this guy "hit" my vehicle and took off. So long story, short, I had a witness and was able to get the bumper fixed at no cost to us. 

So a month ago I'm all excited because I have a shiny new rear end (hee hee) and I feel good because my car has been fixed... Well that lasted long now didn't it. What 3 weeks I think!

Remember.... last week... beautiful pictures of us in snow... yeah lots of fun! Well guess what? We need another flippin bumper!!

It annoys me to no end, just because you own a 4x4 doesn't mean that you'll be able to stop on ICE!!!!!!! What's the deal with people, I mean seriously, the following day we had people tail-gating us and I'm thinking, "HEY here's a hint for you..... LOOK AT MY REAR END- you might not want to follow so close and for the love of God slow down already.

How much more obvious does it have to be.

My poor husband was sitting at a red light on his way to pick Nathan up. It had just started snowing and this woman came over the crest of the hill way too fast and didn't have time to stop. BANG! Her vehicle, a Toyota Corolla, a write-off, radiator fluid all over the place, anti-freeze leaking, non-driveable. Our vehicle came out of it pretty good considering the hit....

So back to the car hospital we go ( as Alyssa stated in the past) This is the third rear end in 6 months. Thankfully no one was hurt.

 But seriously... I don't have that nice of a back end!

The hatch doesn't even close right anymore. It's just annoying!

A christmas story

The snow arrived in Victoria on Sunday and Alyssa couldn't wait to get out there and play. It was -17 with the wind, (unusual for here) We had to make sure Alyssa came in to warm up every half hour or so. Nathan played a bit in the snow ( he lasted about 5 minutes), he wasn't too sure what to make of it. He was much happier inside where it was warm, perhaps it's because he was bundled up so much he could barely move?

 Happy Holidays everyone, looks like it could be a white Christmas!

Ta da!!!! Let it snow let it snow!

Great weather for sledding

Alyssa and Nathan playing in the snow

Nathan is just like the kid in a Christmas Story... he's fallen and he can't get up...

million dollar smile

Soccer Star

This past Saturday, Nathan discovered that playing soccer with daddy was pretty fun. We attended the Schneider kids Christmas party (where Sean works) on Saturday.  They had a couple of indoor fields set up where the kids could play ball sports: basket ball, ball hockey and soccer, among the most popular sports being played.  

Our little grabber spent the first part, just running around the net, then he got interested in the ball (he of course did not kick, just grabbed with his hands - hence his nickname) and was rather intrigued with what daddy could do with the ball and his feet. It was so fun to watch! He's growing so fast and showing interest in sports. So fun! I think he could become a soccer star! Mommy is so proud of you little man!

 Show me again how you kick.

and he goes for it, he's gonna get the ball

I'm gonna get it dad!

Finally some GOOD news

Nathan had a hearing test this morning. Up until now, we had been told that Nathan could not hear well out of his left ear. The severity of the hearing loss was not known. We've been back for several test and we always had a difficult time getting the testing done. Today they put little tubes in his ears  to do the test ( They hadn't used them before and I'm not sure why) and although Nathan didn't like them they did the job, each time they fell out they were caked with ear wax. Nathan has unusually small ear canals and with the amount of wax build up in his ears it may have been enough to cause him to have some hearing difficulties.

The results from todays test confirm that he has normal hearing in both right and left ears. It's the first time we've come out of an appointment with good news! Yeah! Today is a good day!

TOY STORY 4- The Party

Toy Story 4 was a "hit" with the kids. It was a bit crazy with 17  preschoolers but lots of fun. Each guest was given a hat, bandana and deputy sheriff star. We started the party with a hot dog lunch, followed it by several activities including, Christmas crafts (making ornaments for the tree)and we also had a coloring station set up. We played pin the tail on bullseye and then had some cake and watched Alyssa open her presents. Our very own "little woody" managed to somehow sleep through most of the party but we did get at least one picture of him in his gear. Thanks Everyone for helping make Alyssa's birthday a special one.

Alyssa's Roundup Gang 

( a few were missing, it was too hard to keep them all still long enough to get a group photo)

Rachel, helping Alyssa get Jessie the cowgirl on to Bullseye.

What a cool gift!  Thanks Nathan!

 Nathan a.k.a little Woody

We played pin the tail on bullseye. 

Alyssa blew out her candles and got help from one of her preschool friends.

Yes, that is Alyssa standing next to Woody!

Three for one more day

Our Very own, Alyssa the Cowgirl, is three for one more day.  Only one more sleep until the TOY STORY 4 birthday party.  LOVE YOU BABY GIRL!

Since Tuesday

Let me begin by saying how therapeutic this blogging thing really is. I wish I had discovered it sooner. I'm very glad I'm doing it.

Thursday Evening, Alyssa finished her swimming lessons. Her swimming instructor stated that she loves the water. Her bubbles are huge and she's very relaxed in her back glide. With a bit more practice in Orange Jellyfish, Alyssa will move up to the next level. We'll sign her up in the new year.

So Wednesday morning, Carolyn came over to meet with me. She is Nathan's OT.  YEAH!!! We finally have an OT and although I don't want to get too excited she has given me a sign that there is light at the end of the tunnel. She was amazed at how advanced Nathan was. I didn't understand because all along I'm thinking he's not even getting purees or anything food related near his mouth. He just has no interest. I put food on his tray and he picks it up and throws it on the floor. He won't even attempt to put in his mouth.  Without an OT on board I felt like it was a loss cause. I guess we mothers DO have natural instincs and I've been plugging along doing things that have gotten him more ready to eat than I thought. YEAH me! Anyway, Nathan's OT is really excited about working with him and it shows. I explained some of my frustrations and she listened. She's asked if Alyssa could be part of the therapy sessions and help Nathan in ways that only children can. "FABULOUS" I said.  Carolyn is very excited and has requested to work with Nathan weekly.  FINALLY, we are going to get the help we've wanted.  

On Thursday... Carolyn went to see Nathan at his daycare. Our little grabber was very receptive to her and played well. Her focus was just to play with him and teach him to keep his food on his tray. He even got bread crumbs in his mouth. WOW!

Trying to cope- today is a hard day!

As I begin blogging I get very excited about reading up on what happening with other RTS toddlers. I feel hooked on what's going on with my RTS family. It's like when I first discovered Facebook, I spent hours looking and searching for friends and trying some of the new games. I find myself now reading and wanting to know what other families are going through and connecting in ways I didn't think possible.

I was reading a couple of Blogs today and found I was excited and thrilled about the progress of other RTS sweeties. Like how Will is signing "HELP" and how Matt is using picture cards to communicate. Then reality set in and I felt sad. I felt sad that Nathan isn't there yet and that maybe it's because I'm not doing enough for him. Maybe I shouldn't be working, but I know that my work is what keeps me sane and what keeps a healthy balance for me. After all I was Christine before I became  Alyssa and Nathan's mom. Then I just felt angry and now I've crashed. I've been feeling sad and I guess It's just an "off" day. I guess I'm still mad that all this has happened to our family. 

I will meet Nathan's OT for the first time tomorrow morning. I would be lying if I didn't say that the system has let us down. Nathan has not had an OT since he left the hospital at the young age of 5 months and I feel we have a long road ahead of us before we can do any kind of catch up. I guess there was no funding up until just recently.  I'm tired of all this crap but will do it because I have to. My little grabber needs me and there's nothing I wouldn't do for him. 

A busy week and it's only Monday!

Yesterday the kids attended a kids Christmas party at my work. Nathan ran around chasing the kids for the first hour and a half and was completely wiped out by the time he got his present from Santa. Elmo is usually a big hit with Nathan but he was just too tired to even play with it. Alyssa spent a few hours running and playing with her friends and was VERY excited about her new beach Barbie and car.

This week we are also getting ready for Alyssa's fourth birthday. We are hosting a Toy Story birthday. Should be lots of fun. We'll be sure to post pictures and update you later next week. This first week of December also marks the end of swimming lessons and gymnastics for Alyssa. We will look into more activities in the New Year

joining the Blogosphere

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Sean