Life lesson | Lessons from my daughter

Today we chat with Brooke!

Hello Brooke, can you tell me about your family?

We are a family of 5, my husband Shane, Kali, Kera and Kasi! Kali and Kera are 6 year old twins, Kasi is 1 1/2 years old! We live in Avis, PA! I’m a stay at home mom!

Can you tell me about your daughters who have cri du chat syndrome?

Kali and Kera both have cri du chat syndrome! We found out Kera has 5p- when she was 7 months old and we found out Kali had 5p- when she was 10 months old! Kera is our adventurous one, she crawls, walks with a walker and recently started walking with one hand held! She is nonverbal and not potty trained yet! Kali is more content being left alone playing with toys that play music and light up! She doesn’t crawl or walk! She had corrective surgery on her foot in Feb 2015 and we are using an up and go to try and get her walking! Kali doesn’t do anything on anyone’s terms but her own, some days we can get her to walk in the up and go like she’s been doing it for years and some days she acts like she has no clue what she is supposed to do in it!

Tell me about doctor appointments, therapies and/or school?

Our doctors appointments for the most part have dwindled off! Kera still sees her neurodevelopment doctor every 6 months because she is on risperidone, Kali sees him every 2 years! They both see there PCP every 6 months still! Every other doctor, orthopedics and cleft clinic(Kera), we see once a year! Their ENT dismissed us now that Kera doesn’t have ear infections anymore and Kali got her tonsils and adenoids out! We drive 2 hours for orthopedics and cleft clinic, 1 hour for our neurodevelopment doctor, I did research and found the best doctors closest to us for the girls! They get PT, OT and Speech in school and then I take them to outpatient PT and OT once a week and I take them to Penn State University once a week for speech also! They absolutely LOVE school, they love being in their mainstream classrooms with all of their friends and they love being in their multidisabilities classroom too because they get to be on the floor and do what they want for a little bit!

Cab you tell me a success story?

We FINALLY got Kera to walk with one hand held, after years of trying! We are getting Kali there, like I mentioned above, she is our stubborn one and only does stuff on her terms and nobody else’s!

Is there anything else you want the world to know?

Our kids understand more than people think they do! Just because they are nonverbal doesn’t mean they don’t know what you are saying to them! If we are talking to them and tell them something funny they will laugh before we do!

Kali
Kera

Thank you Brooke. Your girls sound lovely, I hope to have a chance to meet your family one day!

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.