Tuesday, March 20, 2012

To work or not to work?

I think as a mother this is a question many of us ask at some point or another.  It has always been a struggle with us I know and now with everything we have going on, it's an even bigger issue.
Where do we draw the line. I get so frustrated with the you have this much time to take off, you have this amount of time to miss without pay, & you MIGHT qualify for a leave or FMLA but you have to sign your life away & so does your doctor. That's after you pay the doctor $20 bucks to fill out the paperwork for you to take your UNPAID time off. Got to love the corporate system.

Not that I don't appreciate the point of FMLA and I've had to use my fair share of it. But, it's like I'm always torn between well "Are the kids sick enough today or will it be worse tomorrow?" And I hate that feeling or the worrying about "Will I have a job if I have to take multiple days off in a row!?"

So then you start looking at other options. Then you think "Well maybe I can do something from home" Then it is wading through the trash to try and actually find a job that will make you money and not just be a get rich quick scam! There is no ONE good answer for every one's situation. Of course, if your are a single parent that changes the whole ball game I'm sure.

I guess what I'm getting at is there is NO good answer to this question that I have been able to find so far anyway! It's all just one big balancing act and hoping you choose right.

I believe that as long as I put my children first God will work at the rest. That's what I have to rely on for now :)

Proverbs 22:6 Train up a child in the way he should go; even when he is old he will not depart from it.

X

Saturday, March 17, 2012

God's Little Messages

Dalton did very well this week sitting down each day with me and working on some different activities. This week we are going to move up to 35 minutes hopefully!

I've been so stressed out and worrying about the big things that I've been forgetting to relish in each small accomplishment! Which is important for Dalton and myself as well.

By "big things" I mean, will he ever be able to really interact with other children, will he get to play sports, participate and attend in a classroom, or sit through a Sunday school class. However, Dalton increasing his vocabulary and signing, increasing his time that he can sit down, and using the potty "WONDERFULLY" are just as big of reasons to celebrate. Because every little step that we take is one step closer to ensuring that he accomplishes the bigger goals!

God reminded me of this today on our way to the eye doctor. (Charlie slept on the way) So it was just me, KLove, and God. He made sure that they played every song that talked about him leading me through the storm, that he was always there even if it seemed like he was just a whisper in the wind, and that coming to the end of me there he would be.

Deuteronomy 31:6 Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.

X

Thursday, March 15, 2012

Information Overload

Since we figured out what was really going on with Dalton, I believe I have read and researched more than ever! I have been talking to anyone who might have information, I'm reading every book and website, and talking to all these doctors and therapists! I feel like I'm beginning to drown in all the information I've gathered.

But now that I've gathered the information it's time to sort through all of it and decide what it the most helpful for Dalton. Which is going to be the most difficult part I'm sure.

It has been easier, once I got on the right track, to find the right kind of information. Studies, books, and other experiences from families and doctors. But unfortunately for this there is NO "One size fits all" fix. It's all trial and error. So do we start at the bottom of the list and go up or start at the top and go to the bottom of the list?

So at this point we are in a planning mode rather than an action mode. That's what it feels like anyway. Like I'm running, running, running only to look down and find that I haven't moved a single inch at this point.

Hopefully we will soon be on the right track for Dalton to start progressing forward in the weeks to come as we figure out what works best for him.

On a good note, we have made it through 25 minutes 3 times already this week in the mornings working together. Hopefully tomorrow we can make it 4 days. :)

Matthew 19:21--Jesus said to him, "If you want to be perfect, go, sell what you have and give to the poor, and you will have treasure in heaven; and come, follow Me."

Monday, March 12, 2012

Questions

Don't we all have questions. Multiple ones each day.

I read something not to long ago that said the "typical" 4-year-old would ask over 365 questions everyday. EVERYDAY!! Isn't that insane?

I remember when my nieces and nephews were younger and they would ask at least that many questions or more it seemed like when I would keep them. In fact, some days it still seems like they ask that many. It would drive me crazy. I would say "Please give me just 2 minutes without asking me a question! Just 2 minutes!" Of course they might make it 30 seconds before they were yet again asking questions.

And now I'm begging Dalton to ask me a question. I know other FX parents have to feel the same way. I try to coax it out of him in every direction. When he finally asked "Where's the remote?" because he wanted to watch Netflix on the Wii. I was elated! Not only did he say "where's the remote" but he shrugged his shoulders and put his hands in the air! Of course he got to watch Netflix.

Which told me two things. 1. He could say the words where's, the, and remote! 2. He understood the concept of asking a question which is probably the most important thing.

Being able to ask a question is something I have always taken for granted. Now I'm beginning to understand how very valuable this simple thing really is.

Psalm 24:1 The earth is the Lord's, and all its fullness, The world and those who dwell therein.

Psalm 147:3 He heals the brokenhearted And binds up their wounds.

X

Friday, March 9, 2012

The Unknown

The hardest part about all of this--Is the unknown. It's what has driven us to find answers for Dalton's issues and now even with an answer it's what plagues me everyday. What will he be like in 5 years, 5 weeks, or even 5 minutes some days.
I think as humans the not knowing is the scariest thing for us. Well for me anyway. Because the unknown isn't something I can't control or even guess at. Sure there is a certain amount of uncertainty in everyone's life. But there is also a "normal course" that most people's life will follow. So, to know that the "normal course" won't be an option is earth shattering. Because even if the course just slightly changes to the right or left or if it completely diverts to a different direction. You just don't have any idea of what is going to happen.

Of course regardless of whether I know the answer or not God knows it. That is what I have taken comfort in. God knows the plans he has made for me, Dalton, and the rest of my family.
We have made it through our first week of working each morning and sitting down for at least 15 minutes each day. He even sat a little longer for me today. :) Another small victory for us.

So, my husband ask me where I came up with "X Marks the Spot" as the name for my blog. I thought well maybe no one else gets it either. Since he was diagnosed with Fragile "X" and in the games/movies "X" marks the spot for a treasure. I thought it was truly fitting because Dalton is one of our little treasures.

The LORD is my light and my salvation; Whom shall I fear? The LORD is the strength of my life; Of whom shall I be afraid? Psalm 27:1

X

Thursday, March 8, 2012

Where it all began.

When Dalton was born he hit all his normal milestones at the right times. He sat up, crawled, walked, and ate normal foods at all the right times. BUT he didn't start talking. He did say da-da and bye bye before the age of 1 but that's where it stopped. It took a long time before he picked up ma-ma or anything else. At the age of 2 we got involved in our local early intervention program and now he is getting services through our local school district.

This week I have started getting him in a better routine and making him sit down with me every morning to do some sort of learning activity. This week we started with 15 minutes. He can make it that long and that is about it for now but we are working on it.

But every time he says a new word or a new sign I silently celebrate and sometimes not so silently if we are at home :) I'm learning very quickly to enjoy all of the little improvements! Right now Dalton probably has a 30 word vocabulary and 5-10 signs that he knows and uses. Of course if you aren't around him every day all day long you may understand 1/4th of the words maybe.

Dalton can, on the other hand, operate the Xbox  and every door/lock that he comes in contact with. He can't operate the mouse on a computer (yet) but he can tell you every button to hit to get it to where he wants it!

The Fragile X diagnosis threw me for a loop. I never saw it coming. Honestly I had probably only heard of it 1 or 2 other times in passing.  So, as happy as I was to finally have an answer was about equal to how completely confused and lost I felt.  So I have done the only thing I knew to do since then. Researched, read, prayed, researched, read, and prayed again.

At this point the only things I know for sure are: 1. My beautiful little boy has Fragile X syndrome. 2. God will carry us through whatever we may face. 3. Thank God I have a supportive husband and family to help us through.

 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. Jeremiah 29:11 NKJV

"X" Marks the spot Mommy

"X" Marks the Spot

My name is Brittany Marshall and my son, Dalton, has Fragile X Syndrome. Dalton just turned 4 a couple of weeks ago and we found out the diagnosis just a few weeks before that.

I'm still running through some of the emotions with finding out the diagnosis. Mad, denial, sad, devastated, happy to have an answer finally, and so many more. I'm finding myself getting to the acceptance side a little more each day. Because I know that the day that I got the call that told me the diagnosis, it could have been so much worse than "Fragile X Syndrome".

So, now I am at the point where I want to tell the whole world about it and help other people who are dealing with the same things. I know I'm just beginning this journey but along every stage of the journey there will be something that someone else will be able to benefit from.

"X" Marks the Spot Mommy