I have to admit, I am tired. Not tired in the sense of I want to go to sleep. Tired in the sense of my body, mind and spirit is so exhausted that I don’t know what to do. The thing is, it’s not Knoah. He has been a angel. He has his moments, but he is doing well. It’s me. At night, like right now, I know I should be sleeping, not writing on my blog. Problem is, I can’t sleep. I am afraid to go to sleep. I thought it would be easier after we have been home a while. It’s not. I watch his breathing, I analyze his facial color. I look at the monitor to make sure it’s working. I am terrified to close my eyes, because I am afraid that when I open them, it will be too late.

Maybe it’s because I have been spending time reading information reagarding SIDS and ALTE’s and it’s connection. It had been believed for many years that SIDS and ALTE babies were basically the same. The only difference is ALTE babies, like Knoah survived. Now research has shown that while SIDS and ALTE babies are similar, ALTE babies show symptoms of problems before hand where SIDS babies were just found dead.

Dead. My greatest fear. I become paralyzed at the thought of how close we came to lose him. What had I not of gone to the doctor’s that day? I would have surely woke up the morning of January 7 to find my son, gone. I know this in my heart.

I read the story in M.E.N today about the family that lost their 6 week old. I am heartbroken for that family. I can not think about it without crying. How sad! My eyes are filled with tears knowing that could have been us. A little baby, gone. His mother. Oh his mother. I want to do something, but I know there is nothing I can do. I know there is nothing I can say. I can only imagine how she feels. I think she feels her life is over, the pain to great to bear, begging God to just take her too.

I know I did. I pleaded with God to spare the child. I still plead with him to spare Knoah. To, before he decides to take any one of my children to take me first. I have told Will that if something were to happen to the kids, not to come looking for me. Don’t try to rescue me or protect me.

Maybe it’s because I am tired, maybe this is the time, it is hitting me. I said earlier, that it would be a while for me to come to grips with January 6. Well, it’s gripping me. I am a mental abyss of knowledge. I think, maybe too much knowledge. I feel like crying. Why? Knoah is here, he is bascially healthy, despite some issues. Jacob is doing well, we are trying to keep his asthma under control, Hannah is a spitfire. Why am I feeling this way? I know it will pass, but I am scared.

I know I have been blessed by having Knoah in my life. I know God loves me enough and trusts in me enough to take care his these three children. I was the lucky one to be chosen to give Knoah a life. A life worth living. I know that God feels I can handle this, I am willing to try. I am trying. It’s not easy. I don’t and won’t question him on why, there is a reason and I will know it in due time. It doesn’t take away my fear.

I guess when you have children, that fear is just apart of your life, everyday. No matter how old they are.

Through out my life, I have had friends. Everyone does. Some are just friends, others are the ones you count on day in and day out. Then there are the ones who no matter what kind of day your having, you know if you need them, they are there.

First, there is my husband, who is my best friend. Through the good and bad, he has been there. We support each other, get into trouble with each other, laugh with, cry with. He knows intimate details about me and my life in general I wouldn’t want anyone to know. My secret keeper and I his “CQ”. He loves me for me.

Then there is the list of several best friends I have met coming along in life.

***Angie***

I met her when I was in 10th grade. She is my second skin. Over the years we have keep in touch, fallin out of touch, but I know she is there. Anytime. I can tell her things that I know no one else would understand or at least would find funny. We have been through what I like to call the “Piggy Incident”. Anyone who was willing to stand by me during the Pig’s flight to freedom has my heart! She is one of the most kind, sincere, genuine people I know. Her life and spirit is pure, she is the kind of person you treasure and I do. I will always love her!

***Kellyanne***

Our friendship started because our children are friends. I was back in Monroe and didn’t know anyone. Our family had a really rough time living in Toledo and it left me scarred. I didn’t trust anyone, I didn’t want to meet anyone new. I didn’t know if I could trust people again. She not only gave me her friendship, she has been there through the roughest time of my life. She has cried with me, she has laughed with me. She has held my hand during medical tests with Knoah, she has at last minute notice picked up my kids from school. She has been my rock when I have been weak, she has been my kind word, when I wanted to hide. She has been my hug when I wanted to cry.

***Heather***

I met her in the hospital in January when Knoah was there. We were roommates when Knoah had the ALTE. When they transferred us back, they put us back in the same room. I just about had a heart attack walking back into that room. It was THAT room. The one I almost lost Knoah in. I was sitting there, when a voice behind the curtain asked, “how is he doing, I am so glad your still here.” It took a second to realize that this women had been in here as long as we had. Talking with her, I found out she had been in there 18 days and counting. Meeting Heather was a god send! Having her with me was a blessing! Over the next few days, we helped each other. Watching the kids so the other could run to the bathroom, take a shower or just get out for a second. Her daughter is a few weeks younger than Knoah and she, oh that little girl helped us realize we had to help her get her days and nights straight. LOL One night at about 11:30 or so, I had just got Knoah to sleep and Keira decided it was time to get up. So for the next 6 hours or so, she cried and cried. After two days, we decided that the nurse would take her for a few hours to keep her up. I gave in and begged Heather to get some sleep and I was going to sleep too. We let the nurse keep both kids and they had refreshed mommies! (Or so we thought) Funny story…sorry Heather, LOVE YOU! 

We decided to run to the store, I needed a few things as did she, so we walk to the car in the parking garage, we are giddy! Happy at the thought of actually going out into public for a spell. Well, we get into the car, fasten the seat belt, laughing at how good the air smells and we drive. And drive, after about what seemed like forever it dawns on us that we are still in the parking garage. Being extremely tired, we realized we were driving around in several circles. “It is always harder to get out of a parking garage”. We manage to find our way out and all is well! Well, we have kept in contact through email and hopefully we’ll get together soon for lunch!

***Sue***

We are two mom’s who kid’s happen to have achondroplasia. She’ll call me about tests and concerns, I’ll call her. We are living the same life, separated. She understands what I am going through and I to her. She knows. She understands. My thoughts are hers and her concerns are mine.

***Cory***

Although we haven’t had contact in several years, I still carry with me all the things we had been through. He showed me that there were guys out there who you could be friends with, without them having alterior motives. He was the one who I spend hours on the phone with, just talking about music, movies and things. He would bring over movies to watch with me when I was sick. He would keep me company when I was feeling lonely and we would drive around Monroe listening to the radio. We would go to Cedar Point, the Zoo, the Drive-In movie. When he left for the Air Force, I was heartbroken. We would talk a few times, him asking me how I was. I saw him the last time years ago. Although we haven’t talked or keep in touch, he was my model for what I was looking for in a man. He helped shape my idea of what a good man was and what I wanted.  

 Good people with great hearts. These people have helped me at various points in my life and we may not have stayed in touch or maybe it’s a every once in a while phone call, I am lucky, to have met them. I will always have them in my heart. I only hope I have brought half of what they have brought to my life into theirs.

Mr. Knoah has been in rear form lately. See above!

He has been demanding, whiny and just plain…too cute for words! I love this picture of him. I took it today and the only thing I though was “AHHH”.

He has discovered his hands and arms. Not that he can fully get them together, but he is making an effort! It also serves to show how short his arms really are. I was talking with Meme the other day and told her Knoah’s arm length. I told her if you cross your arms in front of you and make both your elbows touch, that’s Knoah’s reach. Where our elbows are is his hands. Make sense?

I can’t help but see this picture and laugh! My Mr. Cheerful appears to have an attitude!!

  I was feeling really low the other night. It was about 2 am and I was wondering through the house, up the stairs, down the stairs, not really looking for anything.

I wanted to go to sleep, but I couldn’t. Something has been weighing on my mind…literally. My weight.

Growing up, I was never considered, slim, slender, thin or waifish. I was what my husband like to refer as “thick”. Thick. Ok. I was, I didn’t want to be called fat. Being a black women, I was destined to have the thighs, round rump, thick lips and big hair.

After I had Hannah, my body decided to lose the baby fat and in the process of 5 years, I went from a size 18 to a 4. No dieting, exercise or pills. My body literally was transforming before my eyes and I was loving it. Then it happened, Knoah wanted to be born.

I was upset, I was going to lose my girlish figure, no more skinny, low ride jeans. No more tight fitting tops. No more size 4. I got over it and enjoyed my pregnant belly.

The longer I was pregnant, the bigger I got. If you saw me, you know what I mean. Still, my belly is the talk of Monroe. I still have women coming up to me, people I know and went to school with saying “You were huge….I felt sorry for you….you looked like you hurt, I hurt for you!” I tried to play it down, I was in denial. I thought, ”I wasn’t that big” OK Tonya!

I hurt, I did, I was in such physical pain, that I wanted someone to just “kill the whale”. I thought, it’s fine, I’ll pop out this baby and BAM, back to me!

Nope. Not only was the not going to happen, but because Knoah had a skeletal dysplasia, one of the indicators is polyhydraminos. I had excessive amniotic fluid. How much fluid? I was carrying around three (3) 2 liters of soda on my midsection, not to mention a baby that was growing bigger each and every day. So, picture this..

*going to be provided an image..some what*

My water breaks while in labor (my water broke on it’s own with Hannah, it was like pouring out a glass of water) and God opened the flood gates. Two Hours Later! Yes, I said two hours later, it was still flowing and it sounded like a water fall! I swear, I was amazed! -*Tom Petty’s song Free Falling*

The water stops, FINALLY and I later have Knoah. So at issue, my belly was huge. I was the size of a women having sextuplets. I saw a picture, my eyes still hurt. Needless to say, I am still recovering. Emotionally as well as physically. It was horrible, it is horrible. The carnage, the destruction. The FLAB!! Poly as it is affectionately called did a number on my abdomen. I am self concious, embarressed and just plain disgusted with my body right now. I am looking into plastic surgery to repair the stomach muscles. They are no where near where they are suppose to be. It causes my back to hurt, I slouch and well, I feel if I fall, I’ll never get back up. The skin. I feel like a deer who has been skinned and left darted against the garage wall.

I REFUSE to wear anything at this point but black. I have gotten rid of 97% of my old jeans. (I am hoping the 3% will fit at some point) I can’t force myself to buy a pair of jeans, I can’t admit it.

“Hi, I am Tonya and I am in jean denial. I believe I fit into a size 6, but, that’s the problem, my BIG butt won’t let me.”

I don’t want to do anything unhealthy, but exercising is nearly impossible right now. I watch what I eat and I know it will take time to got back where I started, but I am looking at options. So, I guess, do any moms have any ideas to help speed along this weight loss???? 

Well, I think he has finally recognized his own reflection. I took him over to the mirror today to show him himself. He looked intently at it as he was confused and then did a “raspberry”. With a little bit of drool falling out his mouth, he does it again and smiles! He made several faces at himself and was delighted to see it smiling back! it was precious!!

On Friday, he had his first PT/OT assessment. He is at age level for responses. He is behind for gross motor, but that is expected for children with achondroplasia. He doesn’t lift his head off the ground yet and has very little head control yet. I have been working with him on tummy time, but he hates it, so I try to compromise with him. When I am holding him I place him a bit higher on my shoulder to force him to use his neck and back muscles. His head is rather large as are all of the kids heads and once it falls back to the point of no return, you have to assist him. We are working on it though.

Right now I am watching his head growth. He has moderate fluid build up in his right ventricle and I am wondering if it is progressive Hydrocephalus or if it is Craniosynostosis. http://www.nlm.nih.gov/medlineplus/ency/article/001590.htm

It is premature closing of the skull sutures. It causes a disfiguring appreance of the skull. In Knoah’s case it is the right side of his forehead. He has an appointment Wed to see the pediatrician. I hoping it’s nothing, but then again, Knoah wants to make my life interesting!

I gave him his bath today and he did wonderful. He didn’t cry or scream. He seemed to enjoy it and it made it that much easier for me. I washed his hair and put lotion on him, got him dressed and he looks at me and says “thank coos”! Haha. Okay, it was just coo, but I know what he meant!

At 4:30am this morning we found out the furnance was not preforming to it’s ultimate capacity. It wasn’t preformin at all actually. BBBBRRRRRR!

So we call the service tech, replace the thermo-cuppler (sp) and bang we have heat!

I am now writing this and I can hear Will upstairs on the baby monitor talking with Hannah and Knoah. Cooing and asking Knoah “who’s the big boy” and “baby Knoah rocks…yeah!” Hannah laughing and Will sniffling. I guess you have to removed from a moment to really experience it. Though I would venture to guess, Will is bundled up under the covers, trying to stay warm….Alaska? please…LOL

I can hear him holding Knoah, patting his bottom. They are watching cartoon’s.

I love that man, he is funny, sweet, caring, sensitive and right now an ice cube!

For me and my husband, what really matters in our life is our children. Most parents have never been faced with the thought of actually losing a child. Most people have never feared on a daily basis that one of their children could exist one minute and be gone the next. Those few parents that have lost a child or will lose a child due to a medical crisis or illness are given a rare glimpse into life that most folks take for granted. LOVE. SYMPOTHY.RESPECT for a LIFE.

I talk about blessings and miracles. I talk about empathy for another human being. These last posts have so filled me with anger and hatred, I found it to be life altering. I mean, when people say that hatered changes you, it does. It eats at you like a cancer for which there is no cure. It is all consuming and toxic that the very thought of evil breeds and infest ates your whole being.

That is not who I want to be, that is not who I want raising my children. You cannot show them the goodness in the world if all you encounter and give out is evil and meanness. You cannot teach your children tolerance and kindness if you cannot show another person the same.

We have been given a gift in Knoah’s life. We have been given a chance to really show the world what matters. Everything else is unimportant. I know there are people walking this planet that breath hatered. I have seen for myself that there are people who under the guise of selflessness relish the thought of bringing misery and toll into people’s lives. Sad. I cannot possible know or understand what has happens in another person’s life to make them this way. Maybe they were not loved as a child, maybe they were disregarded as if their life was unimportant. I don’t know, I’ll never know. I can only show them kindness and sincere concern for their life. The fact that they are here is testament enough that they matter.

I watched Knoah today, scream his little lungs out. He was fine, lying in his bassinet. He was not physically in pain, he had a dry diaper on, his tummy was full. I stood there trying to figure out why he was crying. Then I pick him up. He continues to scream, then it lessens to a whimper. Then he stops. Looking at me with his big, blue eyes. He coos and smiles. There it was, all he wanted was to know he mattered, he was loved. Once he knew I would comfort him, even though I didn’t know what I was comforting, he was fine. I hug him, kiss his forehead and say “I love you”. He coos again and slowly drifts back off to sleep.

It was at that moment, as bad as I thought my life was, I felt a peace fall over me. You lose those moments in the mist of life. You encounter people who as I said breed toxicity, that it filters on to you. Without warning, you become evil too. I am not talking evil in the sense of monsters and ghouls. Evil, pure, uninhibited loathing for another being. It’s scary to feel this. It is even scarier to see someone like this. You encounter them everyday at the grocery store, at work or a stranger glaring at you. You did nothing wrong, they just hate you. Wishing bad things upon you.

I cannot control their thoughts or emotions, but I can control mine, albeit, I struggle as the next person, but I stop, breath and exhale. I cannot ask someone to get to know me or force them to change their opinion of us. I cannot expect them to treat us like a human being or extend the same respect to someone else. Free choice. That is the one thing God gave us that we cannot change.

All we can do is continue to live our life as best we can and make appropriate choices. We can pray for people to receive what they are looking for in life and hope it brings them the peace they need.

I had to really pray tonight. I had to ask for guidance in my life. We are at a crossroad with our lives. We can do nothing or we can fight, but ultimately, we are not in control. God is.

Many nights I begged God to leave Knoah’s life alone and to take mine. Many nights I cried from fear that he would take Knoah from us, then it was my father who said to me sitting in the hospital cafeteria. He said “Tonya, you should be grateful tonight. God is letting you keep Knoah. You could be planning a funeral tonight instead of sitting here in this hospital.” 

Life is more than trying to get what you can for yourself. So much more than material things and possessions. Life is important. Your family is important. Love for another person is important. At any moment, God could call your name and it is all done. What will your book of life say about you? Were you kind? Spiteful? Generous? Angry? Accepting? We all are writing our owns books. Many pages filled each day with our thoughts, feelings and actions. I know what I want mine to say. I want my book to reflect my willingness to look past those who only show hatred. I want to see the good in each life, regardless of what pain they cause in my life. I want my children to see goodness in others even when they hurt you. I want to say, because you are a child of God, I love you. Okay, that’s corny, but I want to say, honestly without ulterior motives, you have made the choice to make my life difficult. I make the choice to continue to pray for your peace, whatever that may be. I want to find serenity in my life.

I was given it and didn’t even know it. One of them just walked down stairs, the rest are sleeping. I hope you find your serenity and peace. If not, don’t worry I will be praying for you. We have had enough people praying for us these last few months. It is all I can do.

 So I attend the city council meeting to express my concerns of there not being a response from anyone within the city govvernment and the administration that claimed to be concerned and commpassionate, yet, I haven’t seen it. There is a post on the MEN forums talking about what is currently going on with city council and alleged illegal activites.

So the reason I bring this up is this, after watching the city council meeting I am struck by a few things.

1. Mr. Brown’s reaction to my comments. placing his head in his hand’s and making the statement “I don’t know where the communication difficulties are coming in?” The communication difficulties are coming in because WE were never consulted regarding the out come of “the meeting with key people.” a simple email would have been fine. If really find this statement facinating as this is the SAME issue my husband has been dealing with at work. People claiming “communication difficulties”. Huh, wonder where everyone is getting it from?

2. The treatment of my concerns as if I were a second class citizen who doesn’t warrant a right to speak my concerns. I am reminded of the things my father had told me about blacks not being able to drink out of the same water fountain or attend the same schools as whites. I certainly don’t see at any council meetings other citizens being disregarded as I was. Does race play into this? Is it because I am a black female? It is commonly believed that when a black women speaks, she is often said to be “causing trouble” or a trouble maker.

3. Why is it that when I sent an email to my city officals, it is ignored, yet a neighbor can recieve a response within 2 hours?

4. I have had a handful of conversation with Mr. Lewis, none with Mr. Brown or the Mayor. Yet it appears based off of Mr. Browns reaction, I have conctinually contacted them as if I have nothing better to do. As far as I can tell, they, our officials are civil servants. You respond to people with “Aghs and lowered head motions? Professional? No.

5. Mr. Lewis continues to state that we do have off street parking as we have a space in back…the same space I refenced earlier that was “taken”away from us. We pay taxes, but do not legally own it. 

6. The key people who had met regarding this issue according to Mr. Brown were himself, Chief Michrina and Mr. Lewis. If the a solution had been reached and with Chief Michrina sitting on the Board of Director’s, did he not feel it appropriate to discuss the outcome with at least my husband? I mean, I understand him not directing any disccussion with me. I have been directed, sort of, from him to my husband that I am not to have ANY contact with him. Why? What was it I did that was so offensive or wrong? I certainly haven’t done anything illegal, so it must be…I haven’t figured it out yet.

7. Too many people are associated with the Board of Directors and the City of Monroe. Chief Michrina (Chief of Police, City of Monroe), Mr. Tom Ready ( City Attorney, who building is right across the street from my home), Dorothy Edwards (City Council-Appointed Position), Ed Paisley (City Council-Elected by the Board), Florine Mentel (County Commissioners-Appointed Position). There are other members who sit on the board who are not associated with the city in a public servant fashion.

I am looking for a common denominator to all these issues that should not be issues. One could say it is us. Okay, we are tax paying, law abiding citizen who have a right to speak our opinon regarding the way the city handles things. Opps, that’s right, however, our life can be made difficult by those in power who make decisions regarding our living. Hum, so how do I deal with that? Keep my mouth shout and let those who apparently have no regard for people in general continue to bully those who choose to do what is right. *Think  ”A FEW GOOD MEN” Court scene with Tom Cruise and Jack Nicholson.

A Few Good Men
written by Aaron Sorkin

Jessep: You want answers?
Kaffee (Tom Cruise): I think I’m entitled to them.
Jessep: You want answers?
Kaffee: I want the truth!
Jessep: You can’t handle the truth! Son, we live in a world that has walls. And those walls have to be guarded by men with guns. Who’s gonna do it? You? You, Lt. Weinberg? I have a greater responsibility than you can possibly fathom. You weep for Santiago and you curse the Marines. You have that luxury. You have the luxury of not knowing what I know: that Santiago’s death, while tragic, probably saved lives. And my existence, while grotesque and incomprehensible to you, saves lives…You don’t want the truth. Because deep down, in places you don’t talk about at parties, you want me on that wall. You need me on that wall.
We use words like honor, code, loyalty…we use these words as the backbone to a life spent defending something. You use ‘em as a punchline. I have neither the time nor the inclination to explain myself to a man who rises and sleeps under the blanket of the very freedom I provide, then questions the manner in which I provide it! I’d rather you just said thank you and went on your way. Otherwise, I suggest you pick up a weapon and stand a post. Either way, I don’t give a damn what you think you’re entitled to!
Kaffee: Did you order the code red?
Jessep: (quietly) I did the job you sent me to do.
Kaffee: Did you order the code red?
Jessep: You’re goddamn right I did!!
 

Oh, that was what the point was. We apparently can’t handle the truth. Or as it has been spun, we don’t know how to state the truth.

Being the kind of person I am, I fear three people in the this world, My mother, my father and God, himself.

If people choose to listen to others without taking it apon themselves to get the know the person, then how really is to blame? 

As I said at the meeting, we have our issue resolved. We recieved a Handicap permit. The City had been sued over this exact issue a few years ago Jones V. City of Monroe. Interesting case, you should read it.  

My concern now is this, if those who’s salary we pay through our tax dollars are allowed to act in a manner that is questionable, isn’t it our responsiblity to hold them accountable for their actions and not let them dismiss us as common servants? This is the way I feel we have been treated. Lied about, whipped and left to die. What else could justify Mr. Brown’s reaction at the meeting? We certainly have never spoken with him. It must be someone else doing the talking. Oh, I have to add, at the November 6, 2006 council meeting the Mayor directed someone to contact us, NEVER happened. Mayor Pro-Tem Burkett also directed Mr. Brown to contact us, even if it is “send someone over to their house”. Funny, as of yet, NO ONE has contacted us. 02/12/07 @ 3:00p.m. So am I surprised we haven’t heard anything? No, they don’t even follow the directions of the Mayor.

Communication, Honesty, Integrity, Civility.

Words I live by. I don’t know about others. But then again, I am a black women who is intelletually challenged and I spew nothing but falsehoods and genealizations. Then again, this is only my opinion.

So, what does all this have to do with raising a child with achondroplasia? It is to show our children, especially Knoah; Strength, Dedication and Resolve. We as people, regardless of our limitations must always be prepared to stand up for the right of society.

KINGDOM OF HEAVEN (2006):

Be without fear in the face of your enemies. Be brave and upright, that God may love thee. Speak the truth, even if it leads to your death. Safeguard the helpless; that is your oath.