I have the word "breathe" above the door to my patio. I often need the reminder...and the past few weeks I've needed it a lot. Where to begin?
I finished up a pretty tough semester of school. I had to take two trips to Austin and leave my family (and new puppy) in the hands of my husband. He did remarkably well. The house was a disaster, but everyone was alive and happy, so I shouldn't complain. Going out of town twice in the last month really took its toll on me. Just simple things like getting caught up on laundry, and helping Kamden finish up his science fair project seemed to take forever. So, blah, blah, blah...I haven't had any time to blog.
Kendall's health is at a stand still right now. That's a good thing. We are still in a holding pattern with her bladder and hips. I'm not naive. I know there are some major things on the horizon, and as she gets older the CP monster and whatever metabolic issues she does or doesn't have will affect her in a variety of negative ways. But for now, we are living life day to day and enjoying the moment with her.
Last week I interviewed for a job. It was something that just sort of came out of nowhere, and I really had peace about it. I found out Monday that I did get the job, so I will be a working woman again in a few weeks. (insert panic here.) In retrospect, I should have agreed to start right away so I wouldn't have three weeks to talk myself out of it. It's not the job, it's the guilt I'm already feeling about leaving Kendall during the day. We still have a few nursing issues to work out for Fridays, but all in all I know she will be in good hands with our beloved nurse who's been with us forever and attends school with her, and my parents who will be filling in the gaps. It won't be easy, but I can do it, and am looking forward to getting out into the world again. My sweet Kamden will have an amazing summer too. With some added income, he will be able to do some camps and activities I otherwise would have to say no to! But everyone in our household's lives will be changing...and responsibilities will be added to all :)
The weather has been nice here lately. Kendall got a new swing set which will soon include a platform swing and a bigger special needs swing with a pommel. We have been spending a lot of time outside swinging, playing with our dogs, and swimming. (all of Kendall's favorite things!)
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 :)