Wednesday, April 25, 2012

Not Everyday is a Good Day and That is OK.

So I have been waiting to update the blog until I felt a little more positive, until I wasn't having a hard day.Well I have been having several hard days recently.I decided finally that it was silly to hide it.The reality is that every day isn't easy, actually I have lots of ups and downs.I figure if one reason I do this blog is to let other people join our journey, I might as well be honest.Last week was a struggle with both kids.Kaylee has been having some behavior issues at school.As a parent you constantly blame yourself.Why is she doing this?Is she not getting enough attention?I do everything in my power to not always make things about Carson. We try so hard to do special things with and for Kaylee.We try to make his appointments while she is at school (which scares me this summer since she will be out for school).Ha, maybe we give her too much attention.Every parent struggles with giving their kids exactly what they need and dividing up your attention amongst them.

We also had Carson's first ENT appointment last week.I can't tell you how much I dread doctors’appointments.It is just a reminder of the fact that, yes, my son has Down's Syndrome, and all the health issues that come with it.I leave them depressed and feeling like we will never get a clean bill of health.Carson's hearing test came back a little low.The doctor is not worried about it because it isn't a very accurate test and he seems to hear.The more accurate one would require putting him under and we don't want to do that with his heart.Having said that, the doctor is not worried...Mom is.I know he can hear and never worried about it.Now I am constantly saying his name across the room in whispers to see if he can hear.Sometimes I wonder if going to the doctor just makes things worse.I know the whole point is to get a baseline and be preventive, but it is hard to hear that your kid has anything wrong with them. Actually I would love a doctor to tell me something positive about my child.In all honestly he is doing really well and has been a healthy baby especially with all he has going on.

Kaylee came with me to Carson's therapy today due to them having to reschedule.It is so hard to have to explain to Kaylee why the girl in the other room is 12 and can't talk, needs help climbing stairs, and help doing basic things.I tried to explain to her that God makes everyone different and she is so blessed to be able to use her words and to have strong muscles.She looked at me and asked, "Does that girl have Down Syndrome like my brother?"I wanted to bust out crying.At such a young age she gets so much.I don't know exactly what the little girl had, but I do know that Kaylee gets it.My hope is that this makes her a better person. A more tolerant person, a more understanding person, and someone who realizes how blessed she is.This truly is my hope for everyone.I believe that Carson was put on this Earth to show us true unconditional love, to remind us of how fortunate we are to be able to do things we take for granted.I love my moments I have looking at my family and feeling so lucky (not thinking about doctors, the future, health stuff), because I truly am very blessed.

Tuesday, April 10, 2012

8 months

Wow!!  I can't believe our little man is 8 months already.  The months are just flying by which has been really hard on me.  I can't tell you how much I want to freeze him right where he is.  Before his heart surgery, before he has to struggle, before life gets hard. 

Well let's see since the last post Carson continues to amaze us.  He started sitting up by himself right before his 7 month b-day.  He had his 6 month evaluations from ECI and met all of his goals so we got to add some new ones.  His goals now include crawling (or being mobile someway) and standing up holding on to something.  He is doing great moving in a circle one the floor and tries to inch worm but doesn't get anywhere.  He also stood holding on to the sand table while playing with his sister.  Carson is getting really good at manipulating a toy to make it work.  He is doing so well in understanding cause and effect.  Carson is such a determined little boy and works so hard to do things we take for granted. 

Carson was baptized on February 12th.  All of our immediate family was able to attend and we were lucky enough to have my uncle, aunt, and cousin bring my grandma, Carson's great grandma.  It was a really special event and we are so blessed to have such an amazing family and a great church family.

I have been having a really hard time lately with everything.  I think it is because the doctors appointments come in waves and he is about to have another wave of urologist, cardiologist, ENT, optometrist, etc.  We also have been filling out and reading about everything we possible can for financial help to pay for some of the therapies.  It is so hard to pick and chose what you think will be enough for him.  I think I am also dreading his heart surgery and the closer it gets the harder it is.  It is just so hard to look at my baby that looks perfectly healthy to me and put him through something so hard.  I know he has to have it, but it doesn't make it any easier and I am grateful he isn't showing signs of heart failure and hopefully will never have to.

On a good note we went to the urologist last week and for the first time his kidney is not dilated....Praise GOD!!  It looks like the surgery is working.

This past weekend we had a wonderful Easter with all my family.  We also attended my cousins wedding and Kaylee was honored to serve as the flower girl.  Pictures to come of everything.  The weekend before we got to celebrate Easter with Charles' family and the girl cousins went to see Mary Poppins with Gram and Gramps while Aunt Kay and Uncle Kris watched the boys. 

Thanks so much for all the prayers and support you all have given our family.  Carson truly is a blessing and while we have some days that are a struggle for us to get through, his smile keeps us going.

**Top two pictures by Diana Busch Photography**