I honestly can't believe I haven't blogged in so long. I feel like I have been in a bit of a twilight zone. In the aftermath of Kendall's seizure drama, I think I've been very consumed with work and not really acknowledging that we almost lost our girl. It was a very. close. call.
I guess I've been on auto pilot. The days just keep flying by and I'm not doing a lot of over thinking. Honestly, it's been a welcomed distraction. With that said, my emotions vary each day. Today was one of those "over-thinking" days. Should I be working? Am I really doing what I'm called to do? When I think about my kids during the day, I get a lump in my throat. Being a working mom is tough. Being a working mom when your child has a shorter-than-average-life-expectancy creates even more guilt.
I know Kendall is in amazing hands during the day. I know each day I am making a difference in families who are where we once were. I'm literally getting paid to pay it forward....but in the throws of doing that, am I short changing my own kids? Was it too soon? Ugh.
Moving on....We received sad news last week that my mom's cancer is back. Her surgery is scheduled for July 23. Just when you think you're out of the woods.....bleh. Please keep her in your prayers. We are praying that it hasn't spread into her bones or lymph nodes, and that the surgery doesn't involve the plan B.
Kendall Ann started summer school this week. Extended School Year is an ARD committee decision....and for Kendall her loss of self-feeding skills and emerging skills with her communication device qualified her. (The fact that the two of those things are reciprocally responsible for each other is a whole other post!)
This was her first experience on the bus. Things have gotten better, and thanks to her VI team creating a book about riding the bus, she continues to warm up to the idea. It was reported to me (SINCE I"M WORKING AND CANT BE THERE TO SEE FOR MYSELF) that she's gotten better and shed less tears.
Enjoy the photos. I promise to post again soon when I'm in less of a funk :)
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)