Special Needs

It’s funny how sometimes even when you sort of expect something it can still shock you when it happens.

On Friday we braved the snow and slush and went to Seattle Children’s Hospital for another neurologist appointment for Sage. It was the first appointment we had about her microcephaly where the doctor didn’t say, “well, it could be nothing…” the neurologist we saw was thorough, asking a lot of questions and spending a lot of time looking at Sage, checking her reflexes and movements. He was straight forward and clear, telling us that he definitely saw enough to concern him. He told us that her head is now 2.8 deviations and that since her weight and height are on the growth chart it’s called disproportionate microcephaly. He recommended an MRI, saying that it was the best place to start figuring out what is going on and would give us some direction.

And then it happened… He told us he thought we should start having someone work with her and getting her some early therapy. Then he gave us a packet for “children with special needs” It made my head spin…”special needs” I knew Sage had microcephaly. I knew there was a chance that she would have some delays, and although I knew that label was a possibility I hadn’t really imagined it or truly thought of my child as having special needs until that moment.

It was like a reality check for me.

Suddenly I was reminded of when I took a class in college on Teaching Children with Special Needs. I remember feeling convinced during that class, with an irrational intuition, that I was going to have a child with special needs. And I remember begging God to not let that happen. Now I look at Sage and I can’t imagine asking God that I wouldn’t have her and can’t imagine having any other child. But, I still wish I knew for certain that she would be able to live a completely full functioning, “normal” life. But, I knew in that moment that wasn’t a certainty I could have. It may yet turn out that way, but there’s enough concerns that I have to come to terms with the fact that it might not.

I sat there a minute a little stunned still by the term “special needs”.

I couldn’t deny it anymore. I couldn’t justify the fact that she hasn’t met her milestones. I couldn’t keep holding on to the “well, it could be nothing” statements.

All along I have sort of known this was coming. I knew something wasn’t normal. Not in the way you know that two plus two equals four but with an intuitive sort of knowing.

When she was six weeks old I had a vivid dream within a dream where things kept threatening Sage and I had to fight for her and protect her. At the most vivid part I saw a number of wasps and hornets stinging Sage. I woke up still in the dream and preceded to dream that everything that had happened in the dream within a dream was happening in real life. It was after having this dream that I knew we had to schedule Sage’s first well visit with the pediatrician.

Maybe it’s bad for me to say it but I’m glad that we didn’t go in earlier, glad that we had those two months of ignorance, to just be with Sage, bond with her and get to know her. Being able to bond with her without the uncertainties of microcephaly hanging over our head was precious and I’m grateful for it.

But, as we sat with the neurologist I knew that the time of denial was over. It was time for a new season. Time to grow up and face my new reality. Time to do the research. Time to make the phone calls. Time to get the help. Time to do whatever we can to make sure that my special little girl can have the best life possible.

On February 2nd Sage will have an MRI of her head and spine. It will be under general anesthesia. If you pray, pray for her safety, pray that we get the best possible answers, pray that we are able to get the results back quickly (as it is right now our follow up with neurology isn’t able to be scheduled until April – we don’t want to wait that long) and pray that we have no problem getting the MRI pre-approved with our insurance.

Rejoicing in the journey,
Bethany Stedman


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Guest Post: Better With You, But Fine By Myself

Note from Beth: I’m particularly excited to share this guest post with you because it is the first guest post I’ve had on the blog from someone who I don’t personally know. I enjoyed reading it and there was much in it that I could relate to. I hope the same is true for you.


I love astronomy. The study of celestial objects has always been a source of amazement for me. If you can, for a moment, imagine life before the universe was. God in all his great power and awesomeness, surrounded by angels, looked into the vast blackness of the universe and said “I am lonely”. I sometimes look out at the night sky and wonder, if for just a moment, I could see that. Trust me, that is a terrifying thought.

I have trouble asking God for things, just like I have trouble asking people for things. I have always been independent above all things. I have never needed another human being to do anything for me. This becomes hard for all the wonderful men in my life who want nothing more than to help me when it comes to appliance repair or car repair.

If you have never fixed something, I suggest your try it, it’s amazingly satisfying. When the thermostat broke on my refrigerator, rather than calling in a repair man, I spent a few hours online trying to assess the problem. With all the appliance repair websites online I couldn’t bring myself to call in a professional. Five hours later I found myself the proud owner of a working refrigerator, much to the chagrin of every male in my family who was ready to call up his buddy to fix the problem or fix it himself.

Imagine, if you will, not actually needing anyone for anything. You don’t need your husband to fix your car (this drives men nuts, trust me). That heavy package you just got, you will find a way to get it up the steps all by yourself. Sure no one can help you move your couch up three flights of stairs, but you can do it all by yourself. It’s liberating, but lonely.

Since I moved out of my parents house at 17 (I graduated from High School and moved to my college town that summer) I have never actually needed another human being, except in extreme circumstances, and even then I spent hours trying to find a way to get on by myself. When a bad blizzard hit I drove home very late at night. I made it a large potion of the way through many cars that were pulled over to the side. I was within a few miles of home when the someone in front of me, who couldn’t drive in snow, wrecked, forcing me to stop, leaving me sliding backwards down a hill. I parked my car, climbed out, and was prepared to walk a mile and a half home when an ambulance came by and I accepted a ride, only because it was almost 10pm and I was not prepared to fight wild animals. It’s not within me to need another person. I want people, which is a totally different feeling, and for anyone who feels the same, a lot more intense. “Better with you, but fine by myself,” as a wise friend once told me.

It means my feelings are hurt a lot more and I try twice as hard to hold them in. It means when I love you I really don’t expect you to ever do anything for me, but when you do it’s so amazing and wonderful I can’t help but feel so grateful. When I love you, and I don’t see you I miss you like crazy and want so badly to see my friend, my love, my family, but I don’t want to impose. I think that’s how God feels, but his scale is infinitely larger. Here is this great divine creator who actually can get by without us, but instead, chooses to want people. God created us so he could be with us, not because he needed us, and that is a wonderful feeling.

But here is the catch, we need him. God designed us to need him, and we do, it’s imprinted on our DNA. Everyone is searching for meaning in life, when in the end, being with God is the very reason for our existence. That’s where I have my problem, needing God. I know in the end I do need him, as I am constantly reminded in little ways. I still can’t help my nature, wanting to do things on my own and never ask him for anything. But I need to. I need to ask him to help guide me through everyday and be there with me. I need him to remind me that sometimes it’s okay to be helpless and needy.

God, our great creator, made man, and still man was lonely. Man had God and with all that love man still needed a companion. “It is not right that man should be alone,” as it says in Genesis. So true. That’s why God created woman, and man and woman need each other. We are supposed to need one another at some point in our lives and thus need God. So why is it so hard? Why do some of us fight so hard to be independent from everyone. Most of my closest friends are die hard hermits and it takes an act of congress to get them to go anywhere. I am not the easiest person either. We are self sufficient, and don’t realize that we need to need people. We should go to church to fellowship with people of similar faith, because we need the reminder that God is amazing.

I try. Sometimes I have to let a stranger fix my washing machine because I can’t fix it myself. Sometimes when my car blows up, literally, I need a lift. It kills me to not be able to do things on my own, but it’s just God’s way of reminding me that I need to need people. He made us that way. So I grit my teeth and pray for the patience to be okay with it. God loves to nudge me. Some of the situations I have gotten into have to make me laugh and just prove that God has a wonderful sense of humor. I think sometimes that is the only way anyone can get my attention. I have learned to laugh at a lot of things that would make most people cry. So when life throws me a grenade I simply laugh and throw a sandbag on it.

This year when I made my resolutions, my biggest was to need people more, and here is hoping it works out. I am trying to be more patient. Trying to be around people more often and really enjoy their company. In the end it’s what God wants. We are supposed to be a light spread God’s love to the world, which is hard to do by yourself.

Bio:
Lilly Nelson is a Jill-of-All-Trades. She loves life, and family, and anyone who passes her by. A unique lady by all accounts you are just as likely to see her on stage as you are to see her with her family, or completely by herself. No matter what she takes it in stride and feels so blessed and honored with the life she has been given. She writes regularly for Avant Greensboro but contributes to other blogs.


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Blanket

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Right now I’m cuddled up, nursing my babe, while my son snuggles on my side, watching Super Why and the snow falls out the window. Tucked under a blanket that my great grandma made, I am reminded of something I wrote a while ago and decide to share…

The Blanket

I am thin and tattered.
Frayed and slightly unraveled.
I am old with stories etched in every seam.
Yet I am soft.
I am warm.
There are stories left for me to see.
I encircle those I love in comfort.
I wrap those I care for in strength.
I am a blanket,
Yet I am not only a blanket.
I am something more.
I am a symbol.
I am the water that surrounds at birth.
I am the arms of the mother.
I am the sun beaming all around.
I am the embrace of the lover.
I am the earth that welcomes us all to rest.
I am a blanket,
And I am yours.

Rejoicing in the journey,
Bethany


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