cri du chat syndrome | Lessons from my daughter

I don’t understand why so many people “hate” Mondays.

First, I try to not use the word hate, as I feel the meaning of it is more powerful than any dislikes I might have. I am sure that I am capable of hate, but I hope to never feel it.

Second, if we didn’t have Mondays, whatever day would follow the weekend would be getting all the harsh comments so this is a lose-lose situation.

I don’t mind Mondays, actually, today, I loved it.

1st. I woke up to the sun lighting my room and the birds singing nearby my house

2nd. Emily and I had pancakes for breakfast. When I make pancakes on the weekend, I make too many that way we can have leftover pancakes on Mondays.

3rd. I love my job! Going to work was a break from the chaos when Emily was a baby. It keeps me sane and balance, I love getting lost in my work knowing my family is ok.

As a child, I saw my mom love her job. She was a kindergarten teacher and she LOVED it. She studied at night to better herself and spent some of her own money to better her class. She was a single mom with 3 kids… I never heard her complain.

4th. I love my life!

I take after my mom, she loves life and taught us to appreciate what we had. We were far from being financially rich but we were rich with love. We were rich in essentials. We had a really nice house, we had food, clothes and everything we needed. Not all we wanted… All we needed. As kids, we sometimes felt cheated of things our friends were getting but as an adult now, I can’t believe how lucky I was and still am to have my mom.

5th. Hubby is now working day/evening instead of overnight. He is working from home so Emily as a safe place to be during summer vacations. After 3 years or so on overnight, it’s nice to have him home and to be off together on the weekend. It was nice to wake-up next to him on Monday morning when the house is quiet as opposed to waking-up to the dogs barking when he was getting home.

6th. Over the last week, hubby and I crossed stuff off our to-do list. Still lots to do but this not sleeping all day (for him) on weekends is awesome! I see the light at the end of the tunnel! He even started our small vegetable gardens. This is all really exciting.

So, today was awesome and tomorrow will be awesome too because I will make it! I (and you too) have the wonderful power of being happy. Mom always reminded us of situations worst than ours and to this day, I can find my happy place anywhere.

On a side note, my new notebook (journal) above will help me document my blog…

I am more a journal person than a computer person.

After 2 years of blogging away without a plan, I have realize that I’ve lost track of the stories I told you. 😦

I will take time to document the posts I have written, I will make copies and store them somewhere safe and I will list all the stories I still have to tell you.

That way, I can cross them off as I write.

And because I can’t go to Chapters and only buy 1 thing… (My new journal)

I got a notepad to help me make a plan, 1week at the time.

And a book about decluttering…. hopefully this will give me good ideas on how to organize us a bit more 🙂 And a book full of really interesting recipes.

I can’t wait to try some.

How was your Monday?

Let’s continue our interviews! Today, we chat with Alicia!

1. Can you tell me about your family?

There is just the 4 of us. We live in Hamburg, Arkansas. Natalie was born June 21, 2008 and Dillon was born June 23, 2004.

2. Tell me about your loved one with cri du chat syndrome.

Natalie Grace Wilson, born June 21, 2008 after a somewhat hectic pregnancy. We got her diagnosis when she was less than 2 weeks old. We got the speech of not being sure what she would be able to do. She has overcome so much. She loves to watch nick jr and Disney jr. Her favorite color is purple. She loves to fight with her dad and brother. Loves bubbles and playing outside. Loves animals and most people. She loves shopping. She’s a very social loving little girl who will say hi and smile at anyone.

3. Tell me about doctor appointment, therapies or school.

Now, not so many. We just do sick visits and check ups. We’ve been to cardiologist, Ent, audiologist, geneticist, general surgeon, etc.

She goes to school at noble elementary in Hamburg Arkansas where she is in the 1st grade. She is in special education classes and does pullouts (pe, art, music, etc) with her regular class. She also has PT, ST, and OT all twice a week. They also work in groups and one on one.

4. Tell me a success story.

She has learned to walk, run, climb, etc. Physically, she has no limits (except being clumsy). She has learned to count out loud to 5. She can count and identify up to 10. She can tell you all the colors and shapes. Her main restriction is that she has limited speech, but we are working on this. But she has come a long way. 😃

5. What else would you like the world to know?

This sweet sassy stubborn loving little girl has made it where we look at the world a different way and made us more appreciative of the little things. She doesn’t believe she has any limits and I believe this has been a major influence in how far she has come.