Tuesday, April 29, 2014

You look like you have it all together....

Someone told me the other day that I seemed like I had it all together. While I would love to believe that this is true....the good Lord knows better.


I have a faith in the Lord that allows me to put a smile on my face and believe whole hearted that he knows all about the reasons why things are the way they are in this life. But I know that one day it isn't going to matter how life was in this world. He gave me all 3 of my children for different reasons.


There are days when I get down and out or super frustrated. Days when I want to look at the people who are staring at us in Wal-Mart when we are struggling and punch them in the face instead of smiling at them like I have no idea why they are looking at us. I have days when I would like to burn Fragile X to the ground if it were possible but it isn't. When I see other children who are Dalton's age and they are able to be in a General education classroom, or able to play sports with their peers, or understand why they have to go to a doctor's office and can tell them what hurts, the sting is still there deep in my heart.


So, I've learned not to dwell on things that are out of my control and focus on things that I can control. I can make sure that get every possible therapy or help that they need. I spread awareness and education every possible opportunity that I have. I advocate for my children when necessary. These are things that I can control while here on this Earth. So I'm determined to do all those to the best of my ability.


The great thing about God is that he doesn't expect us to have it all figured out. He will never leave us nor forsake us. We just have to know that when we can't walk along this path on our own he is there to carry us.


X


Amazing Grace (My Chains are Gone)

Monday, April 28, 2014

No use crying over spilled milk....

Sunday we enjoyed a great day at Dollywood! The kids had a blast. We were really impressive with how well they handled waiting in lines, the crowds, and noise level at times! We used going as incentive for Dalton to be good at school. I promised him if he was good for 3 weeks then he would get to go.


Then we came home. Well the first thing I notice when we get home....NO MILK!! I don't know about your all's house but in this house that is a tragedy to my children. So I turn around, leave the house and go get 2 gallons of milk. I get back home put away one gallon of milk and put the other on the counter.


I pour 2 glasses out of the gallon for Nick and Payson. However, instead of putting it away in the fridge I set it on the counter for a second to do something else.


Payson comes back and sees the lasso (which had been put up because they try to drag each other around with it) on the counter and tries to pull it down. However she only accomplishes knocking pretty much EVERYTHING else off the counter PLUS the gallon of milk. Jug busted and milk went EVERYWHERE. Of course the kids then saw a slip and slide in my kitchen (at one point or another in the clean-up all 3 of them fell.)


Sometime days I feel like we are walking around on milk on a tile floor. Slipping and sliding every which way just trying to find our footing. Sometimes we get it wrong and fall back down again but every now and then we find just the right spot to step that steadies us back out.


X


Free To Be Me



Friday, April 25, 2014

Let me explain...

I decided after my earlier post I should probably take a little more time and explain the way things played out.


The first FX test that we did was done by a company called JS Genetics it was a free test done by mouth swab. We met a representative of the company at the Fragile X Conference we attended 2 years ago. They had just gotten some type of government grant to do the testing for free. They sent the results to our pediatrician at the time and they relayed to us the results. I had never seen a physical copy of the results until a few months ago.


The reason we requested a copy of the results were because at the time we tested Payson my parents were also tested to see who carried the gene. It was my dad and we were told the results for him we were under the impression that he too was a carrier. He was going to take part in a research study for carriers so my mom had to get a paper copy of his results. When she received the paper copy we discovered that he is not just a carrier he actually has Fragile X Syndrome. He is simply not affected by it for some reason (no worries that are going to use him as a guinea pig to figure out why :) and he isn't the only one in the world but it is way less common).


So that day mom went in and requested to receive a copy of Payson's as well.


The pediatricians office was going by her repeat number when they told us she was a carrier which on the results they were sent her repeat number showed just as greater than 150. However, once I received a copy of the results and looked at the description of the results things got a little complicated. The description made it sound more like she had it rather than that she was just a carrier, because it stated that she could be effective in cognitive or behavioral way (it said this with big, complicated medical terms thrown in there).


Thankfully, the place where dad was going to be part of the research study offered to redo both of their test at no cost to us.


Yes I am mad because they didn't get it right the first time, yes I am glad that we now know for sure after a few months of things being up in the air, and yes I am sad at the same time for my beautiful daughter. However, girls are not always as affected as boys are and until she gets older we will not know for sure how she may be affected by it (that's not to say that they can't be).


I'm not sure how it was wrong the first time or what the issue was but I know that God has a reason for everything even when we cannot begin to fathom what it may be. He will walk with us now just as he always has.


X


Just Say Jesus


Praise You in this Storm









Sometimes they get it wrong...

It's been a long time since I posted last. We have been crazy busy around here. Dalton is getting ready to have surgery again in a week or so on his ears. Everyone say a prayer for us has we head into another one. He also has to have his tongue clipped because they have decided he is tongue tied 6 years in. I asked them about this when he was like 2 and they were positive that he wasn't. Well they were wrong. He also has to have an appointment at Vanderbilt because there is also a problem with his soft palette.


We also found out that Payson's original FX test results were wrong. Payson has Fragile X Syndrome as well. Sometimes they get it wrong.....


My faith in the medical field quite frankly. I know not all medical professionals are incompetent but sometimes they get it wrong and I truly believe we as parents should be free to question them and get second opinions. We are dealing with the news of this.


X


Jeremiah 29:11 NKJV -- For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.