Fortune Teller : Function-Disfunction

When I left the hospital with Grady, no one handed me a glass ball to rub my hands over, or a magic eight ball to ask important questions to or a business card to the local Fortune Teller. No, we left the hospital with a little baby boy, who deserves to just be a baby, free from inspection, expectation, pressure, examination and generalization. Free from open-ended questions.

So when I get the “is he high functioning” or “what level is he at”… I kind of cringe. What does it matter? and if I told you “low” (or whatever that is) what would that accomplish. He is just the way God made him, each thread of his being has purpose. Sometimes, I think people like to hear that he is “high functioning”, as it takes away from the surprise blow that he has down syndrome. It makes it “ok”. It numbs the awkwardness I see in their faces. Somedays, I tell people what they want to hear because it’s easier that way.

1 Samuel 16:7 “For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart.”

Hang in there with me for a moment, follow me…

 

Grady has down syndrome, he in some way shape or form will show delay, he already has. He may not talk till a little later and when he does he might talk “different”.  Grady may not walk until a little later than his peers, but he will get there.

Today, Grady is 9 months, we are not fortune tellers, and their is no way to tell where he will fall as far as functionality. Just like I don’t know if Mason will cure cancer or become a dad at 16. Just like, I don’t know If I will die at 28 or 88, only time will tell.

Today, Grady is still my baby, and when the day comes when we realize if he is “high” or “low” functioning, you bet your bottom I will love on that child no differently. We will encourage him, love on him, expose him to new things, and fill in the cracks that society leaves with endless love.

do you follow me? can we be ok with either way… because we trust in HIM with HIS  work. Grady is not mine in the big picture, he is God’s… so I will be thankful for another day to just be his mom. I function just fine that way.

Babble, Babble, Babble…Job 33:4

Originally I would have named this post, Gobble, Gobble, Gobble… but sweet sounds have been heard hear at the Ski’s house over the last few days. At 9 months …. 18 pds and about 27 inches long our Sweet Grady started jabbering, babbling, jaw popping, lip smacking…. BABABAB’s and MAMAMAMA’s and DADDADADDA’s. (video clip to come soon!)

So amazing and out of the blue that Daddy had to walk out of Church Service today because Our Baby Boy was babbling too much. I was so proud as other people turned around to see who’s baby was chattering up a storm. I was so proud as peering eyes gave me that look with a grin on their face…. I wanted to stand up and say, Yes that is my child you hear. Wait, hold the Sermon, let’s all listen! ha, Ok, you might think I’m joking, but I am so thankful for these noises.

Babble away my little turkey!…

-Update:

Thanksgiving was peaceful, relaxing and filling. My Grandmother held Grady for a long time, and when she got up and gave him back to me she said to me ” I think I have to get my sweater on, I’m cold without him on me”

Later in the day, Grady fell asleep on Paul’s chest, and out of nowhere My Grandmother got up and walked across the room and peeked around Paul, turned to us and said ” I was just checking he was breathing ok ”

These two happenings, speak volumes.

For the warmth of Grady’s tiny Body, so full of life..blood pumping in all the right ways through all the right veins, warmed her lap for a moment in time…and as she checked his breathing I reflect on this

“The Spirit of God has made me, and the breath of the Almighty gives me life.” Job 33:4

Thankful.

4:08 pm : Thankful and Reflection

I took these pictures just a few moments ago, all three of my men sound asleep. I had a moment to take a deep breath, (it’s been an insane week) and sit in silence and thankfulness with a moment of reflection.

My two sons, tiny hands at rest and their bodies relaxed as they have drifted off into napland.  I am so thankful for them in my life, they are everything God intended, they are my reminders that life should go on, no matter what.

Then my Husband, who dozed off instead of going into the woods, he needs his rest. He has been running on empty with continuous colds the last three weeks, his body needs to just Be. I am thankful even though I don’t always tell him or show him. I am thankful.

At this moment in time, 4:08 pm  my Grandmother is on her way up for thanksgiving. Remember last year… she didn’t come. In this hour she is on her way up to spend time with us. I am reflecting. “Maybe Grady will be God’s Gift to open her heart.”  (qouted from my post from last year)

I am thankful to God that he is transforming her heart, slowly but surely. Thank you God, for my Grandmother this thanksgiving!

It’s 4:08pm, I am thankful. Full Circle.

1 Thessalonians 5:18 “…give thanks in all circumstances; for this is the will of God in Christ Jesus for you”

 

From Potty to Hunting… In that Order

 

Mason at 13 months.

Oh, was I ever so progressive and excited when 13 month old Mason sat on his first mini-potty. Yes, I was that mom, eager, hopeful, excited and oh yeah (clueless). Mason, my first child amazed me with going #2 the first try, how cute?! hahahaha…what a Sap I was….I was always pushing it with him, testing his limits, and moving forward. Unfortantley he didn’t accept  the challenge. We sat him down after the “potty fad” wore off and told him when he learns to go Potty like daddy he can go Deer hunting like Daddy…So we gave him his first hunting magazines and he watched Deer Season after Deer season come and go…and decided to just let it happen. Ok, as age 3 is drawing near and other kids his age have their big boy’s on, I was starting to worry, and dread “potty training”…

He still reads them and sleeps with them!!

UNTIL….

Last Monday, he decided all on his own, without asking, coaxing, begging or bribing, that he no longer wanted to wear a diaper, and he would now go on the potty. Just two weeks shy of his 3rd Birthday, my stubborn little mini-me made a big boy decision. I didn’t have to spend countless hours with big sticker boards and fancy books, nor did I have to wave chocolate across his face to exude excitement at the prospect. Nope, Praise the Lord, all on his own and in his own timing, he did it! We only had one accident all week and not once has he peed his bed at night! It’s kind of a miracle in present day. Wooohoo…

So that could only mean one thing, the time has come, to venture off into the woods with Daddy to go Hunting, years of Turkey hunter, Deer Trail and Bass Pro shops catalogs has come down to this one day…My first Hunt with Dad.

My Sweet, Sweet First Born… you need to be very quiet next time, you scared all the Deer away. But, Dad told me you had a blast checking it all out.

 

 

Health Update & 9 Month Pics

Yes, 9 months already! I can’t believe it. At 9 Months Grady is getting stronger and prop sitting for a few seconds, he is still exclusivley breastfed but solids are in our near future.

We have been dealing with some interesting & concerning congestion, respitory, pooling, coughing issues for 4 months now. So recently I went to the Pediatric Pulmonologist, they are ordering a swallow study to see if he is aspirating, a chest xray to get a closer look, and possibly a sweat test to rule out some other stuff. (stuff being CF) crazy I know!  Thank you for all who have been praying for wisdom for the doctors and patience for mommy and Grady’s health, we feel covered. Thank you.

We are sticking with his meds prescribed this time, as he is going on Prevacid tablet twice a day and Pulmicort breathing treatment ( a low dosage steroid) to calm the inflammation. I’m sticking to it and through it to see if we actually see some results. This is a challenge for me for some reason, hmmm….

Our Bible Study on thursday nights has nicknamed Grady “The Percolator” …as he gurgles and percolates the whole time. Sweet baby boy. Other than that he is a happy and content baby, sleeping and eating like a champ. I have big plans to announce this week as a little project we have going on with him, Check back to hear more this week. In the mean time, here are some 9 month pictures of my beautiful baby boy.

Rainbow Baby…ROYGBIV(L)

Did you know that Grady is considered a Rainbow Baby. Now, I’m not one for cheesy slogans or sayings, but this one works for me.

A Rainbow baby is a child conceived after a storm.

On December 26th 2008, I was 5 weeks pregnant and on that day  He who gives also took away. I folded the big brother shirt back into the drawer and moved forward, not easliy but the motions of motherhood to a 1 year old didn’t leave me any choice. I didn’t want to hear how common miscarriage was, it wasn’t common to me.  I only knew for one week that I was carrying, but in that one week I had hopes, plans and dreams.  This experience knocked me off my invincible baby making horse. I was not in control.

On May 16th 2009, I was 12-13 weeks pregnant and on that God Ordained day, He who gives also took away. (again)  That was one of the worst days of my life as we hurried out of a Wedding reception while trying not leave a trail. I grieved differently this time, I wanted to stay in bed forever, I was heartbroken, confused and in the midst of a storm. No-one seemed to understand even when I was  reminded of the angels I would know have waiting on me upstairs..I felt empty. The plan He had for me was like a deep haze lingering over my every glance and every movement.  What was next…

I captured this two weeks ago, It amazed me to see the rain falling down in the middle of the bluest sky. As always I am in awe at God's handy work.

If your a math whiz or some horoscopic calendar nerd, it doesn’t take long to figure out we conceived our Grady very soon after. Very soon, inconceivably conceivably soon.

Rainbow Baby.

Do you know the biblical purpose behind the rainbow?…..it’s beautiful. of course.

Genesis 9:12-17 (New International Version)

And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come:  I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Whenever I bring clouds over the earth and the rainbow appears in the clouds,  I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.”

So God said to Noah, “This is the sign of the covenant I have established between me and all life on the earth.”

_____

God starting working in overtime, he put a few extra hours in the night we conceived Grady, because he threw in the Love Chromosome at the end of our Rainbow. Not only giving us a rainbow baby, but a baby sporting that much more Love.

ROYGBIV + Love

The pain is gone. Delivered.

The Burly and the Cute!

Hunting  Season is  upon us, and with it comes a very hairy husband who is channeling his inner “all that is man” persona. Well done, hunny.  Sad to say the only one who has enjoyed this extra bit of burliness is Grady. He loves it, he snuggles to it and it has been a sensory overload for him as well. Who knew the beard would be thearputic for our littlest one.

Anyone who has been around me in the last few weeks has heard my gripes about this bearded lumberjack who has stolen my husband. Luckily after this little photo-op he traded in his Old Testament Look for his sleeker well shaven Military High and Tight and smooth face just in time for Veterans Day!   Just the way I like it 🙂

 

My Beautiful Mason, swimming in the shower...where all it takes is a half an inch of water to make his world go round!

Laundry:: Confession

It’s no joke, I let my laundry pile up till it reaches the level where we can declare it a mountain or name it for geological purposes. I hate laundry and when I get busy or my regular helper bales for the woods and Bucks, I utilize my procrastination skills and get buried alive. With no shame I admit it, and luckily for me I have an amazing mom who is always willing to get a good laugh and help me find a kid or two under the pile. (no kiddies where hurt during filming) hehehe.

Mason helped me also de-clutter the sink today. He loves to do dishes like his daddy, I’d like to think this passion will carry on until he actually cleans them for mommy 🙂

Just in case over the last year or so I painted a unclear picture of  my life …. I’ can be a hot mess… I thought this might clear it up. Oh, and if the top pictures don’t do it, I am happy to give a pictorial of my car right now ::)) xoxox

Be Still

Sometimes and most recently I have gone quiet and Still. So so so unlike me, but sooo how I desire to be more like on a consistent basis.  Most recently I have found myself sitting in the middle of  inconceivable firestorms as they are whipping around me.

Firestorm, is my word of the month. In my assessment it is when you sit in utter and complete dissalusion, lack of any control over the situation, sometimes the world is spinning, feeling hopeless, reeling, something that seems out of control, whipping around. Heat. When you are forced to reflect. Opportunity for advocacy.

one example:

I sat at a table of acquaintances recently, one of them while in mid conversation started to jokingly describe this random guy as …. “R-e-” …(he quickly raised his hands to his mouth, turned red in complete embarrassment and looked at me and apologized, ” I am so sorry Erin”.) He caught himself in mid-word in front of a group of people, the word was… Retarded.  Momentary Mamma Bear Firestorm. While everyone got uncomfortable and glanced at me,  I glanced down at my little baby boy, who I don’t see as Retarted. My first encounter with this word in relation to Grady. It felt odd, strange, and inconceivable. I was Thankful that someone was trying to omit the word in my presence but I left scratching my head that my baby is put in the same context as this word to others.  I’m not going to go on and on about the word, I don’t like it, we don’t use it in our house, I have used it in the past, I get it. I think everyone should think hard about the word, and make a personal, informed and prayerful decision on it. If you so feel the desire to use a descriptive word to describe someone try my 2 year old’s vocabulary, it will not only get you farther than using Retarded but probably won’t offend anyone (poopyhead, moosehead or dodo bird). Many people won’t think about it or stop themselves in  mid-word….

My reaction.

I was… Still.  Quickly praying silently in my mind. I’d like to think God is doing a Proverb 14:29 work on me (slow to anger). But this particular situational reaction doesn’t translate in all areas of my life…. But it did in this one small victory.  When I am Still, I am more likely to hear what God is trying to tell me and show me. Advocating comes in many forms, I think one way is just being Still. Not all situations call for a quick emotionally driven reaction, I think If  I would have reacted immediately it would have overshadowed the situation.  The word almost spoken (but heard at the same time) in the same room over my child evoked enough personal evaluation from all parties present.  The awkward fidgeting and silence that spread through the room like  fire looked like advocacy to me. Atleast I’d like to think.

Just so you know, I hold no hard feelings to the friend who sparked the fire for me. I’ll continue to love on them.

I am glad I am getting to know myself better in God in response to situations. Glad I’m not following my emotions as much or what everyone else thinks should happen. I’m praying that it work through me in many more situations to come.

I didn’t share this experience until now. Sharing is good.

Grady's first Train Ride, we went to the Museum of Natural History in NYC with the boys last week!! He loved the train!