My life, that is. As a teenager, I would daydream about my life. We all did. Who I would marry, what my kids would look like, how I would dress them, how I would raise them. You can say my vision included my son a being a little sk8ter boy and my daughter rocking rebellion to the day is long. In someways I got my wish. My son is a little sk8ter or he tries to be. Hardcore he’s not, but gentle and kind. The kind of kid who looks tough but is the kid who is always telling his mom he loves her. I love it!  My daughter, standing up for social injustice. Protecting the meekest and mildest of us all…okay maybe not ”US” but if you have four legs, she’s got your back! Unless your a worm, then she’ll hold you till you dry up.

I didn’t envision being a mom to a child that some could call questionable. I didn’t think I would have a baby that some can say “isn’t right”. Then again, if anyone of my siblings were to be in this position, it should be me. In alot of ways, Hannah, my daughter, is alot like me, except the four legged part. I stand up for those who cannot themselves. I voice my opinion to give those who do not have a voice a chance.

I was standing in the kitchen yesterday, holding Knoah and dancing with him. Thinking about his life and how I would like for it to turn out. Because we know our children’s lives never turn out the way we want. I made a vow to myself long ago, that if I were to ever bring children into the world I would try to teach them to speak their mind. Hum, is that what I really wanted? Yes. My children have learned to speak their minds. I am going to do the same thing with Knoah. I know he is going to be stared at. I know he is going to be looked at as strange or different. I know people are going to point him out. He is going to need a thick skin. I use to think I was in the minority being bi-racial. I thought I stood out in crowds, especially in Monroe. I could not tell you how many times my husband and I walk into a building or function and you can bet 99% of the time I will be the only black there. I know how Knoah is going to feel. Granted, I never had to outwardly deal with people pointing me out or making my race something to be gawked at. Most people are use to seeing African Americans, Asian, Hispanics, etc. Most people have never met a dwarf. The condition is so rare, that it is estimated that worldwide there are only 195,000 people with dwarfism.

I never included in my daydreams a little person.

Is my life what I expected. No.

I worry about Knoah’s health. I worry about my son’s safety. I worry about my daughter’s education. I worry about my husband’s employment. I don’t know what tomarrow will bring. There is a lack of stability in our lives that threaten’s our survival. At any moment, our world could be shattered. 

I sometimes wonder if I would change things if I could. I would. I would have encouraged my husband to not change jobs. I would have pushed earlier in the pregnancy that it was not progressing as it should have and something was amiss. I would have homeschooled my children, instead of placing them in public school. Yes, I would change alot of things. You make decisions based on what is best for your family. Usually, they work out to your advantage. It is those rare occasions that make you wonder why you thought you were doing a good thing.

Is my life what I expected? Definately not.

My children, my husband? Yes. I know what to expect from them.

Knoah has his doctor’s appointment in Feb!! YEAH!! I spoke with the Dr’s assistant yesterday and she is sending me all the paperwork and info we need for the appointment. I am so excited. He is one of the leading doctor’s in the world of dwarfism. I cannot wait to meet him and to have him follow Knoah’s growth. He is going to give us so much insight into Knoah’s condition. Guidence, I am going to get guidence!! He is on the medical review board for Little People of America (LPA) and has written many articles on dwarfism. We are very lucky he has a off site clinic in Grand Rapids. If he didn’t we would of had to go over to Wisconsin. There are only 5 skeletal dysplasia clincs in the United States. So, I am jumping for joy!

I bought him a mobile for his crib today. Let’s just say he is in love. He just stares at it and when he is moved away from it, he cries. Moving him away from it makes him very angry, so cute! His big, blue eyes just gaze at the cloth insects and big sun face. It is very cool, it was made by Lamaze and plays three different songs and even came with a remote control! I think this thing originally cost $50.00, but I got it for the low, low price of $20.00! LOVE BIG LOTS! I enjoy finding bargins, it puts me in a good mood!

I am getting concerned over Knoah’s medical issues. While he hasn’t had any severe complications from the Achondroplasia at this point, doesn’t mean we won’t face them in the near future. I am hopefully going to find out soon enough about an appointment in Grand Rapids in Feb. It’s not too much longer, but consider we are talking about a doctor’s appointment, that seems years away.

He is going to see a specialist that deals with skeletal dysplasia’s and with that will come all of the testing we need to have done. The one I am concerned with right now is Knoah’s soft spot. His head is larger due to the achon, but it can also become larger because of the hydrocepahlus. If not caught in time, it can lead to brain damage. It looks like his forehead is larger than what it usually is.

I have been reading articles where the insurance company’s have denied claims based off of a list they have of “uncovered conditions”, especially where it concerns fetus’s that are known to have a genetic condition. We are hoping that the insurance company will allow us to see the specialist and pay for it. I can only imagine what his fees will be. The last 30 months have been hard financially for us and it keeps getting worse, now we have a baby who has this disability. I wonder how we are going to afford alot of the things he’s is going to need.

For Christmas, I received some money and I am going to hopefully buy Knoah his stroller. Why can’t I buy just any stroller? Well, because of the achon, he cannot be laid anymore than a 45 degree angle. He lacks the muscle tone and head control and with the spinal compression being a possibility, he has to lay flat. So I need a pram type stroller. Young children with achondroplasia often have kyphosis at the thoracolumbar junction. Knoah has this, it is like a hump in his lower back. Typically, this kyphotic curve is seen right after birth and can become exaggerated if Knoah is held improperly. I managed to find a stroller for $150.00. It lays down and will hold him for sometime. Most of the one’s I have found are expensive. One was $600.00! Not in this lifetime! I put him in the stroller my sister is letting us borrow, Knoah’s poor head just flopped to one side. His head is so large and heavy for his body, he has very little control over it.  

On a brighter note, I got Knoah’s apnea monitor today. I bought it off of Ebay and it monitor’s his movement while he is sleeping. Achon infants and children can suffer from central apnea and/or obstructive apnea. So this monitor will alert us if Knoah stops breathing for 20 secs and more. So much for the brighter note.

When my husband I bought our home almost three years ago, the kids were at the age where they would start to remember holiday events, or at least certain aspects of a day. Well, as we were finishing the last touches of Christmas morning before the kids get up. Yes, my children have to be woken up on Christmas morning. Even though they have talked all about it for half a year, the big day comes and they would rather sleep!

So, Will and I decided to make a memory for them. To prove Santa had been in our house, walking around, we make powdered sugar foot prints. We used powdered sugar to prove to the kids, if it was Santa, he is sweet and so are his footprint. Yes, Hannah tasted it. We went ahead and woke the kids up and as they come flying down the stairs, I envision the smiles and giggles to the unwrapped gifts.

It didn’t turn out the way I envisioned, my children at this point unconcerned with what was under the tree exclaimed very loudly “Ohhhh, look what Santa did, he made a mess on mommy’s floor! Are you mad mommy?” They then wanted to immediately get the broom and clean it up. I redirect them and told them it was okay.

Every year we do the footprints. Now instead of fear in my children’s eyes over the mess, Hannah, the official footprint tester, says “Yep, it was Santa”.

Merry Christmas!

“What do you want for Christmas?”
“Nothing”
“You have to want something, what would you like?”
“Nothing”
“Are you serious, I am getting you something?”
“Don’t, I already have my gift.”

My middle child Hannah is an extremely bright child. More in the sense of she get’s life. When we were trying to explain to the children what was going on with Knoah and how he was going to look, I showed them alot of pictures of little people. Jacob, the oldest, had a hard time grasping the idea of people being different sizes. That if you tall doesn’t mean your an adult and if your short doesn’t mean your a child.

As a  parent you try to teach your children to be caring, compassionate, considerate.

You teach them to stare is rude and you don’t say things that could hurt other people’s feelings. So, eventually there comes a point when they will say something that makes you want to crawl under a rock.

Case in point: I took the children shopping one day. As we approached the cashier, (she was tan, with dark hair and dark eyes) my son just natually assumed she must have been Hispanic and proceeded to greet her with, “Hola”. I am thinking, huh? The poor cashier, said “What does that mean?” I told her it means hello in spanish. Jacob then proceeds to ask her if she wants to count with him and starts counting in spanish. I hurry with my transaction to get out of the store before he says anything to embarress me. Jacob then wishpers, loud enough for her to hear, “she didn’t count with me, I thought she knew spanish” My eyes are huge now! I asked him why he thought that and his response was, she looks spanish. “Oh. Um, well, just because someone looks a certain way doesn’t mean that they are and besides you shouldn’t assume anything. You want to know something about someone, you ask first”.

Or when we were explaining to the children about Knoah’s condition and he will not grow as fast or as much as they will, my 6 year old daughter saw a women of short stature. Maybe 5′3 or so and loudly proclaimed “Mommy, baby Knoah is going to be short like her, isn’t he!” After I picked myself up of the floor, I calmly said to Hannah that baby Knoah will be shorter than she is and it’s rude to say things like that, you could hurt their feelings and you could embarress them by pointing them out like that.

She felt bad, but I prceeded to explain that when Knoah gets older would she want someone to say something like that to him. She responded with a no and got my point. I hope.

So, I have been trying teaching them to have respect for other people. Doesn’t always work the way I indeed, but, it’s like anything else…trial and error. 

Edited 12/20/2006: Talk about being sensitive. When discribing someone, I should try to use the right phrasing….Geez!

You know those days when things just sort of pile on for what appears to be no rhyme or reason? I have had one of those weeks. It’s not enough that we have to worry about Knoah on a daily bases, but we have everyday life to think about. Kids and school issues, job issues, daily living issues. Sometimes all you want is to wake up in the morning without someone or something opening the door to chaos.

I suppose it’s just the way it is.

One of my best friend’s bought me a book for Christmas. It’s by Dan Kennedy and it’s about his daughter Becky who also has achondroplasia. Of coarse, I didn’t make it past page 3 without starting to cry. He describes in detail raising his daughter and the medical issues she faced. The more I read, the more I cried. I am only on page 15, but I know I could be reading my life story and it’s terrifying.

Even as I sit here, I am beginning to stress. Every parent wants to give their child the life they never had. I don’t. I want to give my children an even better life than I had and I had it good. I feel like I am failing. It can’t happen soon enough or be more clearer. I am trying, we are trying, but it’s not enough. I wish I could look into the future and know what our life will become. You look back at choices you have made and now wonder, what if. What if I had known this is the path our lives have taken. What would our lives be like if we had made a different choice. We would be making more money, we could take the kids on a trip, we could get the baby the medical care he needs instead of waiting. What if we had known before the second trimester that Knoah had achon. Would we of made a different choice? We would be even more prepared to take care of him. We would have had more time to find the right doctor’s.

Sometimes, it takes all you got to make it through the day in one piece. You wonder were you went wrong. You think, if I had, If I had, If I had. If I had what?

A different choice would you take it?

What do you think so far? Are there questions you have? Do you want a more in depth explanation of something you have read? Please share your thoughts.

 Tonya Sweat

To this point in Knoah’s short life…no pun intended. We have had to prepare for a number of medical issues that could come up. Fortunately all of them can be ruled out through testing.

No sooner was Knoah born; they had to use the rescue breather because he wasn’t breathing. Then they whisked him off to the NICU to attach him to all of these wires and tubes. Some 12 hours after he was born, I was allowed to see him. My husband told me to be prepared. I was. I knew that he would be hardwired like a computer; no one told me he would have an IV, let alone where they have to place it. My son had this tube coming out of his head. I was horrified. I stared at him, he was huge.

*Thought* How are they going to tell me he is going to be a dwarf, but he weights 9lbs 6ozs? He is 21.25 inches? Apparently God does have a sense of humor.

They lifted him up out of the crib and told me to sit down. I did and they placed my third child in my arms.

I had my son and he had survived. My mind was racing, was he healthy, are there any complications. I looked at his feet.

 Club foot could be an issue. Nope, his feet were small but fine. His ventricles, was the fluid elevated? They had not done the head ultrasound yet, but they were going to. Hydrocephalus is a concern. We had detected prenatal his fluid to be elevated. “Water on the Brain” is a complication of the dwarfism. The tricky part is, if he was born with a slightly elevated level and it remained there later, it is just what his brain needs to bathe and to remain healthy. If it has increases, he would have to undergo surgery to have a shunt placed in his head. The thought of him having surgery as soon as he left the womb was not a thought I liked to contemplate. We needed to have a full skeletal exam to receive the diagnoses. Was it Achondroplasia, was it Hypocondroplasia, could it be Diastrophic Dysplasia? We didn’t know. Based off my medical knowledge and everything I had read to this point, he looked like he had achon, but I am not a doctor. He needs to be evaluated for an apnea study. His spinal cord and foramen magnum may not be an adequate size and could cause spinal compression, which in turn could cause him to stop breathing. To find out if spinal compression is an issue we need a CT scan and an MRI. His growth needs to be charted on a special achon chart. He would fall off an average height chart soon enough.

So many concerns. We haven’t even gotten into the complications from the height. Modifications we will have to look at for our home. Adaptive devices, to help him live a self sufficient life.

Then I realized, let me just enjoy the time I have with him. We can deal with the rest later or in a few hours. That was good enough for me.

Well, he’s finally here!! After the excitement and drama from the birth, I have a chance to see what my child looks like. I am partial, but I think he is beautiful. I can see his short limbs. His arms reach his waist and no further. Most newborns arms reach to their hips, Knoah’s does not. Knoah’s legs are short, mainly his thigh or femur. His head is large as well as his torso being long.

With the TLC show Little People, Big World most people I have encountered are becoming increasingly more aware of dwarfism and it’s not just something you see at a sideshow. I think that being a parent of a little person opens up new experiences and you see things you didn’t before. I have heard people say things like, “Oh, I have seen that show and they are so small and cute.” Or “It’s amazing they are normal.”….hence the name of this blog!

I have found dressing Knoah is presenting some challenges. It is difficult to find things to fit right. I have to roll up his sleeves and his legs just flop around in anything bigger than NB (newborn) sleepers. Yes, he is short and cute. His little arms and legs are precious. I adore his little feet, but with dwarfism comes a whole host of medical complications.