Wednesday, September 4, 2013

I'm back!

It's been a while hasn't it? I've had a renewed desire to blog recently so I'm hopeful I'll be on here more regularly. For today, here's a little picture to get started.  Sorry it's so blurry, it was the most incredible rainbow I have ever seen. It is a representation of what I've been feeling lately.  Even when life is quite stormy there can be amazing beauty at the same time.

Thursday, September 20, 2012

Sad and Happy

Lauren is really into making sad and happy faces lately. I came across these gems on the IPad today.

If these 4 pictures don't satisfy your need to see Lu's happy and sad faces then you're in luck because have at least 200 or more of them! For some reason they make me giggle each time I see them!

-Posted using BlogPress from my iPad

Friday, June 22, 2012


Lauren will be 4 in a couple of weeks! I cannot believe my baby will be 4!

Last night was her first night in her entire 4 years of sleeping without her binkis. Yes that is plural.

These are her most prized possessions. She affectionately calls them by their colors. This set is called white, pink, pink. Did I mention she loves them?

If ever she is not cooperating with me a conversation like this happens:
Me: Lauren, do you want to keep your binkis?
Lauren: YES
Me: Then you need to help Mama.
Lauren: OK

It's been the best bribery ever! But sadly that era has ended and honestly I am probably more sad about it than she is.

Actually she has done great without them. She understood when I said they were gone and hasn't asked for them since. It is strange to send her to bed without them but seriously, she is almost 4, it's about time!

I'll just have to find another thing she loves enough to make her listen to me! Wish me luck!!

- Posted using BlogPress from my iPad


These piles of laundry may look very normal but they are actually quite interesting (to me at least!). The big pile is Abby's and the small one is Lauren's. Believe it or not, they represent the same number of days of wear. This size discrepancy is not abnormal around here. Each time I fold laundry I see this same thing.

The question is, does Abby go through an abnormally large amount of clothes in a given period or does Lauren go through an abnormally small amount?

And the answer is......(I know the suspense is killing you!)...... Sadly it is that Lauren goes through a small amount of clothes. The even worse part is that since she doesn't dress herself yet it is my fault. This is terrible to admit but she will wear the same clothes for multiple days quite often and yes, she wears them to bed too. Why am I admitting this?!

Tonight I decided that as I have become a more experienced parent (older) I find that I am a much better parent in some ways and a worse one in other ways. This clothes situation with Lauren is definitely one of the things that I am worse with! Maybe I'll write a post someday about the things I'm better at but not today.

So, if you dressed your child in fresh clean clothes this morning be proud of yourself. I'll try to follow your example tomorrow!

- Posted using BlogPress from my iPad

Sunday, June 17, 2012

Visionwalk and BBS Conference

Just a quick post here. I'm sitting in the Atlanta
Airport on my way home from the LMBBS Conference at Duke University in NC. It is a bi-annual conference for Bardet-Biedl Syndrome. It's my first time attending this conference. I should say our first time because Nate came also (which has been fantastic!). It was a great conference where I learned a lot and met a lot of wonderful families who are dealing with the same issues we are.
I also wanted to mention that the Visionwalk was his past weekend while I was gone. I was sad to miss the walk but knew the BBS conference was important.
I want to thank all the people who supported us and donated to our team. We were able to raise just over $2000!! I appreciate so much every single dollar that was given. I felt love and support from all of you. The dollars given will be put towards research that WILL prolong or possibly save Tyler and Lauren's vision.
I cannot thank you enough!!!
- Posted using BlogPress from my iPhone

Monday, May 7, 2012

Feeling Down

In the past 2 weeks I've had 3 IEP meetings. The first was for Alex. He has been in speech therapy to correct some letter sounds. This meeting was actually to sign off on ending his therapy. He decided one day that he would fix his sounds and get out of speech! He was diligent and quickly fixed his sounds and he has been very consistent since then. I am so proud of him for recognizing and fixing the problem!!

The next meeting was for Lauren. Her meeting was just her annual meeting to review and set new goals. It was the best meeting I've had with her team and I appreciated connecting with her teachers and therapists better. She has made some great improvements this year in preschool. The biggest struggle she has is that she wants to do everything in her own way and on her own time! The teachers and I exchanged ideas and suggestions and I felt like we were working together to support Lauren. It was great. We also spent quite a bit of time going over her results from NIH. We talked at length about the vision problems that she will inevitably have and discussed things to watch for with her. I was so impressed that I could do that without getting emotional! I feel like I can talk about the future without really connecting that it will really happen. It's a strange disconnect in my head.

The last meeting was to review Tyler's NIH results with his IEP team. Again, it was an interesting hour of talking about devastating realities in a very detached, matter of fact kind of way. Tyler's vision therapist reported on how extremely quickly Tyler is learning Braille, that he has a real gift for learning it. I was so happy to hear that but a thought popped into my head that maybe he has been given that gift to learn because he's going to need it. The thought hurt and caught me off guard. I didn't want to cry so I pushed it aside.

I am starting to learn that I can be strong when I need to be but the emotions will hit me at some point. That point seems to have come today. I think I push the emotions away and try not to feel them and then it makes me feel terrible inside after a while. So today I'm giving myself a day to feel the emotions and hurt a little for my kids. Sharing these feelings are part of my effort to feel them and move forward. I'm sure I will feel better tomorrow but for today I'm content to be a little down.

- Posted using BlogPress from my iPad

Thursday, May 3, 2012

Time with Abby

Today I went on a field trip with Abby and her class. We walked to a local nursery to learn about plants. Here's Abby sitting with her classmates.

I've had a couple of opportunities to spend semi-alone time with her this week (semi because Lu is around too). Abby is such a happy, bubbly, fun person to be around!

I surprised her this week by checking her out of school and taking her to lunch. I've never done that before but I will be doing more of it in the future. It was so fun to steal her away and get to enjoy some time with her.

It's been a fun week with her.

- Posted using BlogPress from my iPad