I haven’t posted much lately, not for a lack of things going on and not for a lack of words. I was honored by being asked to write one of the letters welcoming families to the CDKL5 diagnosis on the new CDKL5 website (set to launch end of March!! No worries I’ll link it up as soon as I can!). I did not take the task lightly. It could be one of the first things families came upon when they get home from the Doctor appointment and they type CDKL5 into google. I wanted to be welcoming and informative, yet honest and real. I know what these families are going through and I just wanted every word to be just right. I wrote and deleted and wrote and deleted. It was taking two steps forward and one back. But I got it done, I was very happy with the final product and sent it upon its cyber way. I can’t wait to link the site on here and for all of you to do the same (nod nod, wink wink) Now we have a name, an organization and a website, now it’s time to raise some dough and kick some ass!
On to life as it is now…. You know how some people see change coming and they embrace it with a gooey wet kiss and smothering hug? You know how some people give it an air kiss and pretend they are happy to see it? You know those who see it and run for the nearest exit? Well yeah that third person is me and if my life were a cartoon you would see me running to one door and see the change monster so you’d see me running for another door only to see the change monster there so the last clip would be of me running off a cliff. Enjoy that little mind art? You’re welcome.
Change has not only come though one door of our home, but pretty much through every open crack. First off it was a joint decision for me to stop working for a few months. With construction right now it is slow, and in a field where people are willing to cut others legs off (or fingers;)) for their job, it is even harder. Our overhead is too high and I have the least responsibilities since handing my HR reign over to work from home with my babies. With Andi’s pre k schedule and not having child care for Oliver, it was the only obvious choice was to cut the weakest link. I am not angry, and thanks to Obama, unemployment has never been so affordable! Health insurance is cheaper on COBRA than while employed, but then again while employed I had a pay check. (ahem) But Andrew is working hard, he is supporting us and I pray that come August when the girls are both in school full time I can commit myself to working and (sniff sniff) put Oliver in daycare. It is just a lifestyle change to go from two incomes to one. Change. A scary freaking change.
Then while preparing for our first week of one income we had a meeting with the state nurse whom I was afraid she would be bearing bad news and she was. We knew we were skating on thin ice with our skilled nursing respite care, Lily’s seizures while yes often and frequent, have never been prolonged or life threatening. She is a kid that our neuro said has never fallen from his top 5 seizure kids (hardest to treat) yet she has never been in status. She has never ridden an ambulance because of a seizure (totally knocking on wood here). She is fed by mouth, never needed oxygen. She is the healthiest kid I have. So I knew we were skating by with having the highest paid caregiver possible. But I’m sure as you can imagine with a state that is broke supervisors are looking into cases and finding kids that don’t need that care and are pulling it. So our nurse, whom we have had for 3.5 years, will only be with us one more month. She is like a grandma to our kids. Do you have any idea how nice it is to have a nurse in your home daily? She answers questions, gives us advice. She loves on all three kids, and takes such good care of Lily. Daily she meets her off the bus. They go on daily walks. She feeds her dinner and gives her all her meds. I trust her with Lily and I don’t know how I am going to feel handing Lily over to a care giver that has no medical background. It is a frightening thought. So now I guess I can use my time unemployed and start looking for someone to help care for Lily. Sigh.
So February has not been my favorite month of 2010. Oliver turned one, but that was sad. Andrew turned a year older and closed our age gap from 4 years back down to 3. I did appreciate that, but for the most part February blows.
I am going to pray that doors have been closed and windows have been opened. I know this will all work out; I just like how things were. Ain’t that life though? Never get too comfortable.
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