I know it's been awhile! We had a great Christmas holiday season, and a happy new year. I've been having trouble with my emotions and realizing that my little boy may end up not walking with his brother and sister's. I know that I have him with me, and I thank God for that everyday. Because after living through a child with CDH and following other families, I do know how quickly those lives can be changed and taken from you. My CDH baby is a survivor. Actually she will be 4 next month! But I did the thing that I should have done to begin with, I started googling "very extensive cysic periventricular leukomalacia" PLV for short. And well the stats show a 60-100% chance of some form of cerbral palsy. I'm fine with that, I guess...well really do I have a choice??!! I know that God only sends us special kids for special parents...I just didn't realize how much God must REALLY like me....lol. Sorry sometimes I have to laugh over my situation sometimes. I have to admit that there are times that I do wonder WHY??? Why will my 3 of my 4 kids have to work so much harder to achieve what other's can do with their eyes closed. Why will Courtney have to be that sibling that is going to possibly the snickers and giggles behind the other's back's at school. We all know how mean kids can be as they get older. Who know's what the future will hold. I will raise my children to be proud of who they are, not what they have.
I have people say all of the time how strong I am...really do I have a choice. I didn't choose all of this! It was given to me. These are my children. I love them with all of my heart. I have met wonderful people and families all VIA the internet who can relate to the specific challenges that I deal with daily. I think that one day after Kenny's in school....I may hide out for a year under a bridge and just watch the world go by...lol...just kidding. But I will probably have my mental break then. I can't be for myself right now. My kids need to have what I have set for them to happen to have them be successful in their own right.
I should be able to be JUST a mom, and not a Physio therapist, Occupational therapist, dietitian, Speech therapist, ABA therapist, and well the scheduling manager to make all of this actually happen at the same time. I feel like I'm a part of so many cliques that I would never want to invite anyone into...the CDH clique, the deaf and HOH clique, the autism clique, the brain injury clique, the global delayed clique. Don't get me wrong. The cliques that I'm a part of have the most wonderful families and children along with them. And I have had my ignorance to all of these different challenges put to shame, and now I am more educated. I actually don't know if I'm making and real sense at this exact moment and that's why it's taken me awhile to Blog...lol
But here, I'll leave you with all of the stats that I have accumulated over the last 5.5 years of my child rearing days thus far....
1 in 100 will miscarry from an amnio
50/50 chance of survival with CDH
5% chance of survival before Kristen went on ECMO
40% chance that Kristen wouldn't have survived ECMO
21% is the air oxygen saturation that we breathe
1 in 150 children will be diagnosed with Autism
4-6% chance that one of their siblings will too be diagnosed
60-100% chance that PVL will also carry CP
150cal per Kg Per day to have a baby grow and thrive and have good brain development
1 in 2500 lives births will have CDH
.4% chance of pregnancy after a tubal ligation
4-26% chance of PVL in premature infants before 32 weeks
100% chance that I love all of my perfect children with all of my heart and I will fight for them to the end to help to make them self confident caring adults!
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