Our PKU Life: Friends

Showing posts with label Friends. Show all posts

Monday, April 29, 2013

Some Days Are Like That

Let's be honest for a minute. How many of you out there have ever lost your temper with your children? Have you ever shut them in their rooms and gone to the other end of the house for a "timeout"? Have you ever gone out on your porch just to scream? Do you find yourself daydreaming of being on a tropical island with only the sound of the waves washing away all your cares while you soak up the sun with your toes in the sand? I have!

As a typical parent, some days can be very...challenging. Some days can be fun and playful and sunshine and roses. The challenging days are the ones that test us. They test our patience, our faith, our strength, our character. Some days we rise, victorious. But there are days...oh, those dreaded days...when we feel like we have completely failed. There is nothing we can do. We just want to give up, and we feel so guilty for it. Am I speaking just for myself here? I really feel like I'm not alone. I talk to my friends and relatives who have young children too, and this is something we discuss a lot. The days we talk to each other the most are probably those days when we really need support, encouragement, and just to vent.

Now I'm going to step out on a limb.

Carson's Third Birthday...with Friends

Wow! I can't believe Carson is already 3!!! Carson's third year of life was yet another year of ups and downs. During this year, Carson presented with a delay in his speech and had to go through much testing. He had his hearing tested, his speech, language, and cognition tested, and even a blood test on some of his genes. The only action being taken at this time is that he was enrolled in the Early Intervention program to receive speech therapy. A therapist came to our home and worked with Carson every 2 weeks until his recent birthday. Now we are waiting for the school system to take over his therapy on a weekly basis.

PKU Awareness

Since today is the last day of PKU Awareness Month, I wanted to do a blog post and share it on facebook to remind everyone I know and just get the word out about this rare occurence and how it affects real people...people you know. If you have time please be sure to read as many of my posts about PKU as you can, as well as the description on the right side of the page. Even if you've already read it, read it again. Everyone who cares for my Carson or anyone else with PKU needs a reminder once in a while.

I want to reflect for just a moment on the purpose of this blog. When I first started writing on this blog a few years ago, I was desperate for a connection, to find anyone out there with whom I could relate because I felt like we were so alone. That was a successful endeavor. I have happened upon several blogs of people and families who also deal with PKU. One of the first people to send me a message was Shane Austerman. He and his wife and son live in Iowa, many miles from my home here in Alabama, and their son, only 4 months younger than Carson, also has PKU. I have connected with this family, with Jackee, I follow their blog, we have communicated by email and send Christmas cards each year. For that, I am so thankful. To have other people's experiences to read and to share means so much to me.

Carson's Second Birthday

This year Carson's birthday was a little less crazy, but still alot of fun. I decided to have a party just for the kids, my friends who have children close to his age. Then on his actual birthday I had some of the immediate family over for cake and ice cream.

Saturday, August 13th, was the day we had Carson's "friend" party. I wanted it to be small and simple, since it was my first party with kids and I had just found out a month before that I was pregnant again! LOL! I didn't want to overdo it. I just wanted to see how it would be and if I could do it. I wanted to have all the stuff I knew Carson liked to play with, so I chose the Beach Monkey theme. We had beach balls, bubbles, and balloons, three of Carson's favorite things. We also had it outdoors at our house, another first, and had a kiddie pool with a palm tree in the middle that cascaded water from it, and of course he loved that (running water, that is!). It seemed like all the kids had a great time.

For snacks, I made all low-protein foods that Carson and Noah could share with us. I made low protein chocolate and butterscotch chip cookies (which were the biggest hit), low protein tortilla chips for the boys and salsa (store bought), and a Chex party mix from Rice Chex, gluten-free pretzel sticks, and low protein bread cubes. I also attempted to make ice cream from coconut milk, but this is a work in progress. I still didn't get it sweet enough. Shaunna's boy, Lucas, picked up right away that it didn't taste the same. But he loved the Chex mix!

A big thanks to all who came and helped Carson celebrate and have fun at his first kids' party: Shaunna, Lucas, and Callie; LouLou and Chloe; and the Martins, Jimmy, Julie, Cady, Anna, and Noah. We had a great time and hope you did too!

The Three 2-year-old Amigos: Noah, Callie, and Carson

Callie teaching Noah how to blow bubbles

Noah and Carson enjoying some favorites: balloons, bubbles, and of course, cookies!

Showing the love: Thank you for coming to my party Noah! As Carson would now say, "Aww..."

The men (Daddy and Jimmy, Noah's daddy) chasing the beach balls as a storm is blowing up

And for the final entertainment of the day, Marty will demonstrate for the Martin family how to feed grasshoppers to his pet garden spider! EWW!!!

On Carson's actual birthday, August 16th, some of the immediate family came over and had cake and some ice cream and brought Carson presents. We were blessed to have Uncle Eric home with us and he was able to come and visit. Carson was thrilled...just look at the expression on his face when he first saw him! We miss Uncle Eric so much!!!

Others who came were Granny and Pops, Nanny, Nana and PawPaw, and Uncle Jason. I made Carson's low protein cake again and did maybe a slightly better job of decorating it this time, but nothing fancy. It also had a better texture and tasted better this year. I am growing into my role as Carson's low protein chef!