July 26, 1930 - August 31, 2007

My Meme passed away this morning.

I was awoken to someone banging on my door at 4:30 this morning.

I am really numb right now. It seems like a horrible dream.

She is my angel on earth. She is my grandmother. She is my Meme.

I am really angry right now.

I don’t know what to do. I don’t know how to feel. I feel sick to my stomach. I feel not real. I want to throw up, but I can’t. I want to scream, but I can’t. I want someone to tell me this isn’t real. God, please tell me this isn’t real.

I don’t want to have to go through the next several days. I don’t want to…

Jacob and Hannah are still sleeping. What do I tell them? How do I tell them if I can’t even get it. How do I?

I know she’s gone, but my mind won’t do anything. I am here, writing, but I can’t actually picture my life without her.

I love her so much. I can’t even give words to my love for her.

My Meme.

I hurt so badly right now. I don’t want anyone to touch me, I don’t want anyone to hug me. I want to be alone.

WHY????

You know, it is one thing to go about life and never really give a smile from someone a second thought.
It is one thing to walk down the street and think you hear a bird chirp, but your not quite sure.
Being thrust-ed into a life you never wanted or never expected does something to you as a person. I think it makes us live. I think it makes us kinder, more compassionate, more understanding.
Even when you think you hit rock bottom, you know you really haven’t.
Having children is a blessing in it’s self. Having a child is chaotic, stressful and fun.

Having a child that has problems with simple things like, remembering to breath, is life altering. In those moments when our child, any child’s life is hanging in the balance and we are forced to examine ourselves as a person. Do you like what you see?

For me, personally, when Knoah had the ALTE and I found out how close we came to losing him, my life changed. For that split second, when the monitors we going off, nurses rushing around and doctor’s placing their hands all over my son’s body, I saw my life flash before my eyes. I saw me, plain and unobstructed. I felt I was a good person. I felt I was compassionate. I felt, entitled to life.
In seconds, it was over with. I no longer felt deserving. I no longer felt rewarded.

I was miserable, I see now. I was searching for something, anything in life to make me feel, alive. I was a mom. I was a wife. I was a community volunteer. I was a scrap kisser. I was a maid.

What has changed? What has made me whole?

Me. My eyes have been opened. I see things now, I didn’t before. I hear things I didn’t, I smell things I didn’t, I love things I didn’t.
Life in it’s darkest and complicated moments are miracles.
Life in it’s brightest and happiest moments are miracles.

One life has helped bring me here. It is in the moment when life is threatened that we step back and see the whole picture.

Sad, isn’t it. At the thought of loss, I decide to embrace everything.

I am thankful. With every breath, I love life.

I am happy. I see now, things I didn’t see. I hear the wind blowing leaves across the street. I smell my neighbors cooking and Knoah’s diaper as soon as he…well you know. I love when my children’s curiosity get the best of them and they explore that “don’t you dare”.
I am a mom. I am a wife. I am a scrap kisser, a maid. I am a good food cooker, I am me.

I cannot change what life hands me, I can only go with the punches. I cannot change what I cannot control and I have found, you can’t control a lot. I cannot change why things happen and pray that when they do, we come out unscathed. I can only change my out look and help others with theirs.

And, life, it’s okay.

His 1st YOUTUBE video!!!

Upholding my “If you nothing nice to say, don’t say it at all” motto. I will write and give you information about the recent Lead concerns in our children’s toys.

To make a long story short, Hannah when she was 2 was diagnosed with Lead Poisoning. It was at her 2 year old check up that they routinely take blood for different tests, Lead being one of them. They do this because at age 2, children are more mobile, they are consistently putting things in their mouth and little body wonder, not always in sight of the parents.

Hannah’s BLL (Blood Lead Level) at the first test came back at 19. According to reports anything under 9 is considered normal.

Her levels prompted a fire storm of authorities to come through our house, right after Thanksgiving to test anything they saw. The walls, carpet, sills. If they could reach it, it was tested. When the report finally came out, everyone was dumb-founded. How does this child have an elevated BLL?

Well, they then tested our back yard. Positive. Our backyard was highly contaminated. The grassy, green play scape our children found refuge in was making her sick.

By sick, I mean, her temperament went through the roof. She started to become violent. At 2! She started to bang her head against the wall, scratching me, Jacob and Will. She started to hit, bite, kick and scream. By this next BLL test, her levels were at 29. Within 4 weeks, she was climbing and any higher, she was about to have medical intervention outside of the daily dose of Iron we had to give her.

When everything was said and done, her levels peaked at 31. She recieved at minimum 30+ blood draws in 3 months. We had to abate the backyard, removing the top 8 inches of soil. Bring in new top soil, and plant new grass. Short of that, the wanted us to encapsulate it. Pour a layer of concrete down and call it a day.

Her levels started falling with the abatement and Iron supplements.

Today she is at 5. Still not low enough for me, but it takes longer to get the Lead out of your system then to get it in.

Why? Lead settles in the bones. As the level increases, bone growth slows. It affects your appetite, mood, everything. Lead causes your body to shut down. It adults this is rough. In children, it could be deadly.

I knew a man, age 40+ who developed Lead Poisoning at age 5. Today, he cannot speak, walk or function on his own. He requires total care from his sister. So, knowing him and then hearing about Hannah, I was determined to help Hannah.

At levels over 50, a medical intervention called Chelation Therapy takes place. It is a long process and doesn’t always work.

It is this reason, Lead Poisoning is especially dangerous for children with dwarfism. Their bone growth is already affected. It could become stunted even more if their levels are high enough. Along with other medical complications, not a good situation.

So, my point. If you have any toys for your children, even if they are not subject to the recall, call you doctor’s to have them preform a Lead test. You’ll thank yourself later!

I am. I have been. I have been trying too.

Be neglectful, that is. Why? Just like everything in life, you have your ups and you have your downs. This week, has been really down.

I won’t go into detail but I will say is geez!

I haven’t posted because I don’t want to complain. I certainly am tired of hearing me complain, I know you don’t want to read about me complaining so I opted for nothing. Leave the blog silent.

So, while my world is full of uncertains, drama need not be’s and the occasional, laugh about the situation because if you don’t you might as well become mental. I will share a few stories with you about other’s joys.

Straight from Sir Grady (You don’t know him, but he does alot of research for us on the Dwarfism list) he presents several heartwarming stories about Little People from around the world!

Thanx Grady!!

4′6 or 6′0, doesn’t matter now! Fashion is all the rage

Dreams come true for one little girl and her cats!

The boy who played in the Simon Birch movie almost 10 years ago now
is all grown up and was given an awesome sweet interview by Roger
Ebert, the movie critic.

His name is Ian Michael Smith; he’s now, 20, and he has Morquio.

I’ve included 2 links on the interview even tho the text is the same
for both, the pictures vary.

“The good life within reach”

A nice article about dwarfism in general. I would have to beg to differ on the “it is more a social than medical” part.

You can also learn more about on the side link called “Little People in the News”!!

Hope you enjoy!!

Well! Knoah had his MRI on Friday!

Needless to say, I was a nervous wreak! We had to leave the house at 8:30 in the morning! He was crying basically the whole time we drove up there. He finally fell asleep just about the time I miss the exit. So I had to turn around and stop at the gas station and ask for directions.

We arrive at Mott at like 9:40am. I run to the Nuclear Medicine Unit to register him for the MRI at 10:10am. We wait a bit and then the nurse calls our name and takes us into a room to get Knoah’s weight, length and information. Then the anesthesiologist comes in with the article I sent them! YEAH!!! He said the he read it and he realizes there are neck precautions for Knoah. I said yes and I thank him for reading it. He explains that it is not a problem and they will be ready for him in a minute.

Exhale. 11:25am.

When they finally come get him, I hand Knoah over. My heart starts to beat a bit faster. I give him ten thousand kisses, tell him I love him and I’ll see him later. His eyes. His eyes were looking at me like I betrayed him. The tech turns around and walks away.

I stand in the room, alone, scared and determined I was not going to worry anymore than I am going too.

I walk to the waiting room and see a sea of faces. Parents waiting for the children. Some are playing cards, others are sitting with their spouses watching T.V..

I decided to take Knoah’s car seat out to the car and drop off his medical book (requires another post). I grab his stroller and I call Will. I didn’t call for any reason, I just wanted to hear his voice. I chit chat for a sec and they make my way to the waiting room.

I give the receptionist my name and she says to have a seat and they’ll let me know if they receive any information.

10 minutes later or at 11:40am, I decide to go get lunch. I wasn’t serving anyone by sitting there looking pathetic. I find the cafeteria and have Garden Cod, carrots and roasted red potatoes. It was actually very good, for hospital food. After 20 minutes, I walk back to the waiting room. I figure 15 minutes of waiting silently isn’t as bad as waiting an hour. I find an OK magazine and read it cover to cover. Heather also calls to see how we are doing. We talk for a bit. It helps.

Why is it taking so long? The receptionist asks if I would like her to call for information, I said yes.

They tell her in about 5 minutes they will take him to recovery and when he wakes up, they call us.

Great!!

It’s 1:50pm. Huh. They should be out by now. I decide to walk. I can’t just sit there and have all of these horrible images run through my head. Like, some thing’s wrong. He’s not okay and they don’t want to tell me. (Our brains, while amazing in it’s own right, simple do not help when we want it to be blank.)

At 2:15pm they call! EUREKA!! I jump up out of my chair and I am as giddy as a toddler on a sugar high! I basically run (OK, I didn’t but I wanted too) to the recovery room. Room 9.

There he is! He is awake and chewing on his foot. “Hi baby!” I lean down to grab both sides of his face, my eyes tear up and a release of emotions are gone. I grab his face and kiss his cheeks softly, he in turn, grabs my face, draws it to his saliva laddened lips and kicks me on the side of the head.

My baby boy!!

They said he did well, there were no complications and they got his neck and complete spine! YEAH!!!! Well find out the results August 24.

After an hour, I am allowed to take him home. They explain the risk for increased apnea and to watch him. Give him Tylenol if needed and feed him as he desires.

Heading home at last!

That night, he is a bit drowsy, but he is in good spirits and I watch him breath, thanking the good Lord for protecting him and allowing me to be him mother.

We have to make a trip to Ann Arbor in the morning. Knoah is having an MRI of the neck and complete spine.

Not a fun day! They have to sedate him. I am not looking forward to that. There is an article that describes sedation in people with dwarfism.

Out of the major concerns are: Apnea, Cord Compression, Visualization of the Larynx, Hydrocephalus with Intracranial Pressure.

The one’s I am really concerned with are the Apnea (self explanatory), the Cord Compression and the Intracranial Pressure.

The MRI will take about an hour, provided there are no complications then he will be moved out into recovery for an hour, provided again, no complications.

I am going to take a book with me, not expecting I am really going to read it. I will probably roam around the hospital. Grab something to eat, make phone calls and think, way too much!

We leave at 8:30am, his appointment isn’t until 10:40, but they want us there an hour early. So I am giving myself an hour to drive up there.

Pray all goes well!!

I also have to publicly say I am sorry to one of my best-est friends. I hurt her feelings and I didn’t mean too. See, a while back I wrote I don’t have anyone to watch the kids. When I wrote it, I wasn’t even thinking about her, it was more my family…well, she has offered a ton of times to take the kids so Will and I can go out. Spend some husband and wife time together, not that way! I have three kids already!! She has offered and I haven’t taken her up on it. Why? Pride, fear, not wanting to push my kids off on someone else.

I have awesome friends! I love them and I know they love me. I also have to realize that when offered a chance to get away, I should take it. Many times I have refused to go out because I have the kids. Running to the mall takes on a whole new meaning with a 8 and 6 year old. Add to that an infant. That is a receipe for destruction! Running to the mall pre-kids took, an hour, maybe two. After kids, minimum 4 hours!

It’s a cycle I won’t visit! I won’t do it. So I stay at home, venturing out to the grocery store when the last morsel of food from the cabinet is gone. I digress.

I am taking her up on the offer! Saturday, Will and I have a date!

Geez, I don’t know what I’ll wear! I have to wash my hair, blow dry it and curl it. Put on make-up. I’ll look like an adult! A real women!

THE JOY!!!

I had a scare last night! At about 5:50 this morning, I woke up and as usual, I looked over at Knoah in his bed. I can see his little chest rising and falling. Some nights I can hear him sleeping. He’s a snorter. He is usually breathing heavy and loud and that reassures me he is okay. Well, last night, I looked over and I didn’t see him moving. I can always touch the top of his head and get him to roll over or take a deep breath. Last night he didn’t. I reached my hand over to feel his chest and nothing. I jumped out of bed and tried to roll him. When I did, he just flopped where I rolled him! My life flashing before my eyes, I roll him again and I realize his skin is cool to the touch.

NO! NO! NO! I thought. NO! YOU CAN’T TAKE HIM! I pick him up and he breaths a deep breath! My heart racing, feeling like it is going to explode out of my chest. I hug him tightly. He settles into my arms and I bring him into our bed. I must of woken up Will because he asks me “What’s wrong”. I tell him nothing and I cover us up. I make a vow to not go to sleep, but I know, if it’s going to happen, I can’t change it. But for a few moments, I can have him next to me, listening to his breathing.

The human mind is an amazing thing. In the few seconds between touching him and picking him up. I envisioned two things. One, he would move and be just fine. Two, he wouldn’t move, calling 911 while starting CPR, the medics coming and taking him to the hospital and then, the news.

I become immobilized at the thought of losing him. With the other two, as a parent you worry that something will happen, but you never have a reason to really worry. With Knoah, not only do I have a reason to worry, but I have seen it. I have held his lifeless body in my arms. I have seen shades of blue and purple on a human body and it usually tells you “their gone”. In my rational mind, my only saving grace is, when he had the ALTE, his heart never stopped beating.

I know how lucky I am. I know how close we came. There isn’t a day that goes by that I don’t say my prays to thank and give praise to God for keeping Knoah safe. For keeping our family safe.

I know I am hypersensitive to this. I know that it is a fear. I think about no less than 10 times a day.

A watchful eye when he is sleeping. Always listening to his breathing. A touch on the head or lips to stimulate a reflex.

Still, I can’t help but worry, will he be the one? I mean, most research suggests that about 10% of children with Achondroplasia could die before their 1st birthday. Common causes are tightening within the Foramen Magnum, Central Apnea (Neurological) or complications from the Achondroplasia itself.

Knoah’s Foraman Magnum looks good. The apnea he did have were all Central. I guess that is why I am so motivated to continue blogging. To continue to share our experiences. It could help someone. It could give them information they didn’t know.
It could save a life.

Knoah woke up at about 9:30am. In my arms, he looked at me and smiled. I kiss him on the forehead and say “I love you!”

“Welcome to Holland”

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

- Emily Pearl Kingsley

A relationship that is. Especially when you your dealing with a special needs baby, two mouthy, demanding children and work.

The demands of work, other people and life in general pulling you all directions. You want to make time for your spouse, your marriage, your life.

I don’t know, but I know Will and I are doing it. Amazingly, after 10 years of marriage, this is a milestone in this day and age.

Our 10th anniversary!

I had always thought that we would take a trip or get away for a few days. Reality is, that won’t happen. We don’t have anyone to watch the kids, no one to watch Knoah and well, there isn’t enough money to have the luxury of a night away.

Knoah has several doctor’s appointment’s coming up here next week. The kids are going to need school supplies and clothing for school and I, frankly wouldn’t know where to go. So, the next best thing is to not worry and place to much emphasis on what I know we can’t have. I am thankful for what we do.

We have three great, amazing kids! Jacob is becoming a young man. At 9 he is still surprising me! At the fair, he knew what a Giant Eagle Owl was!? Then he curtly tells me, “It’s the biggest owl in the world mom!” Hannah is ever more showing that no man will ever keep her down. Ask her if she wants to sit on a draft horse, she’ll back down in a heartbeat! Knoah, oh my sweet baby boy! He is trying his hardest to crawl! His temper is making more of an appearance every day and he likes to use me as his human teething ring. Doesn’t matter mom his losing a pint of blood a day, by golly, he has teeth coming in and they hurt!

We live in a great community! We have family and friends that love us. Since our trip to “Holland“, our family and friends have been amazing! Even our friend’s that want to remain hidden. Until the day I can do the same!

Will is great! We don’t always get along and when he calls and says that he is running late, some days, I am okay with it.

Though with everything we have been through in our 10 years of marriage, I am still amazed that he can make me laugh.

I have found that saying about finishing sentences and knowing what their thinking before they say it true. We can, and you know what, it’s okay!

We have experienced life, love and loss. More times than I can count.

Here’s too many more times!

Happy 10th Anniversary Will!!

I love you!