Happy New Year!!!

What an interesting and exciting year for our family. We have had lots of good memories and like any family, some not so good ones. Last year at excatly this time, I was sitting at the hospital after having Ethan, waiting to be discharged. We got home about 6:30 that evening and went to bed shortly after. I slept right through the new year.

Ethan's first month went pretty smoothly. About a two weeks after he was born he started to get congested. I took him to the doctor who assured me that he just had a little cold and some clogged tear ducts. I got in contact with the MISD and started getting therapy set up for him. He was still very congested a few weeks later and I kept taking him back to the doctor. They kept assuring me that he just had a cold. Finally after another week of this I took him to my doctor who diagnosed him with having bronchiolitis. She said if he gets any worse to take him to the ER. The next night Ethan started to have very labored breathing and I took him to the ER. They took a chest x-ray and diagnosed Ethan with bronchiolitis and pneumonia. He was in the hospital for a full week. They were very close to moving him to the PICU and putting a breathing tube in. Thank God that Ethan held his own and we were able to avoid this.

A week after Ethan was realeased from the hospital we headed to Florida for our annual family vacation. It was wonderful and very realaxing. Exactly what we needed after being in the hospital for a week.

In march, Ethan started therapy with the macomb intermediate school district. He recieves physical therapy and occupational therapy.

The next few months passed and nothing worth mentioning happened. Ethan stayed stuffy and congested off and on for the next few months.

In May, my Grandma passed away. She had been batteling colan cancer for quite some time. While it was hard to lose my Grandma, I was glad that she no longer had to suffer. Also I was very glad that she was able to meet Ethan and hold him before she passed. The saddest part of everything is that she had a shirt that had been made for her years ago with the names of all of her grandchildren and great-grandchildren. She was buried in that shirt.

Also in May were Dax and Emma's birthdays. We had a joint party for them. Emma turned two and Dax turned four.

We were able to travel a bit over the summer. In June we attended our annual family reunion in Tennasee. After that we went to Myrtle Beach for a family vacation. My Grandma lives there along with my Aunt and cousin. We brought Grandma back home with us to work with Ethan and provide some respite services. She has been a huge help.

The next few months has kept us busy with therapy and kids. We have stayed fairly healthy. Ethan contines to do great. He is an amazing little boy with a personality that just draws people in. He has come so far in just a year. I am amazed at that little boy.

In December Ethan celebrated his first Christmas and three days later his first birthday. He made out like a bandit for Christmas. Of course he didn't care about the toys. He just liked the paper! We will be celebrating his first birthday on January 10, 2009.

So anyway, I hope everyone had a very Merry Christmas and a wonderful Happy and healthy New Year!!!

Christmas

Well Christmas is only three weeks away. I have not even started my Christmas shopping. I had better get my butt in gear!

We are all feeling a little better. Ethan is still a little congested. I ordered the nose freida for him. We got it a few days ago. I have used it a few times but I am not sure if I like it or not. The whole concept for using it is kind of gross. You pretty much stick one end in the nose and the other end in your mouth and suck the boogers out. Gross right? I have heard good things about it so I will give it a chance. I have noticed that he dosen't cry and fight me when I use this as opposed to the bulb syringe. I do have to add that it has a filter so the boogers do not actually make it to your mouth.

Well, I hate to cut it short. I will try to add more later. Ethan has woken up from his nap.

another boring day

Today was pretty uneventful. I woke up not feeling well. My head hurts, my neck is stiff, my throat hurts, my ears hurt and my nose is stuffy. Sometimes it sucks being in such close quarters with little kids. Ethan just got over being sick and the week before that Emma was sick. It just never ends. Next week it will either be my son ar my husband that gets sick. I cancelled therapy for Ethan today. It gave me a chance to just relax. Sometimes keeping up with therapy gets so tiring. It is only two days a week but I swear when I take him there he either cries or lays there with his mouth hanging open and acts like he dosen't know how to do anything. It is kind of annoying because at home he is such a different kid. He is vocal and will sit up and army crawl. Sometimes I think that his therapist don't really believe me when I say that he can do stuff.

I did get to take a wonderful 3 hour nap this afternoon. It is something that rarely happens but I LOVE it when it does. I still feel tired though. One of the joys of being sick I guess. I had a chance to run errands and pay some bills earlier. It was nice to get out of the house without lugging around three kids. Well, I really hate to cut this short but Emma just spilled water all over the place. AHHHHHHH!!!!!

Ayla is one!

Today Ethan's Girlfriend Ayla is a year old. I can not believe that it has been a year since she was born. Where has the time gone? For those of you who don't know, Kadi and I met at a support group meeting when we were both pregnant. Kadi was due about a month before me. I remember so clearly when she walked into the room crying. I had never even met her before but I had this strong urge just to hug her. I felt so bad for her yet I knew exactly how she was feeling. We exchanged e-mail addresses and discovered that we had a lot in common. We both even had the same doctor. We were exactly what each other needed. At the time we met, I was still struggling with the diagnosis but had already cried my tears. I was starting to accept it. I think Kadi needed someone who knew how she was feeling. I was struggling with knowing if I would be able to do this. Since Kadi was due a month before me I saw everything that she was going through and I knew that we both would be okay in the end. Sometimes I think God puts people in your life for a reason. Really what are the chances that everything would happen the way it did? Anyway, I remember the day she called me and told me that she had the baby. I had so many questions for her. I wanted to rush over to the hospital and see Ayla. I swear I could have kept Kadi on the phone for hours. But you know what, the most important thing for me at the time was just seeing that she could do it. She made it through the delivery and did love her daughter. Knowing all that made it bearable for me. I remember the first time I saw that sweet little girl. She was sooooo adorable. I just felt so much love for her. I just can't believe it has been a year. I can't believe how far me and Kadi and our little ones have come. I look forward to many more years of having that sweet girl in my life and her mommy too! So Happy Birthday Ayla!!!! Ethan and I love you very much and look forward to watching you grow into an amazing young women.

Okay, I have been horrible at keeping this blog up to date. Things have been going really well lately. Ethan is still doing pretty much the same things as before and is still NOT sitting on his own yet. I know he can do it, he just refuses to do it. His therapists have been working extra hard to accomplish this goal. I hope to have him sitting by Christmas. To him it is much less work to lay on the floor with a toy than to actually use his stomache muscles. He is a little lazy poop :) Just kidding. He really is such a joy in my life. He the the sweetest baby, the cutest too! I couldn't imagine my life without my little guy.

Yesterday Ethan had a little playdate with his girlfriend Ayla. It was so cute. I just love seeing them together. Ethan rolled all over the floor and tried to take off Ayla's socks a few times. Ayla just sat staring at Ethan. I guess she was mesmorized by his good looks. My friend Kadi and I sat them together on the floor to get some pictures. Ayla beat up on Ethan a little bit and he just sat there and took it until she turned her head and then he got a fistful of her hair. I took some cute pictures of them.

Videos of Ethan

ready to enlist!!!

Ethan is army crawling!!!!!!! Tonight we had some friends over and we were playing video games. Ethan kept tugging on the cords and getting tangled in them. So I moved Ethan to the other side of the living room away from the cords. A few minutes later I see Ethan rolling to one side and pushing with his opposite leg. Then he rolls to the other side and pushed with his other foot. He made it all the way across the living room. I almost burst with pride. He still is not sitting up yet but he sure knows how to get what he wants. I made him do it several times just to make sure it was real. When he got tired of doing it he took over the attitude, "I'm done, just give me what I want." It just goes to show that kids are capable of much more than they let on.

Also, My friend Kadi and I were interviewed a few weeks back by CNS news here is a link to our stories.

Kadi
http://www.cnsnews.com/public/Content/Article.aspx?rsrcid=37599

Mine
http://www.cnsnews.com/public/Content/Article.aspx?rsrcid=37509

Buddy walk

We had our first Buddy walk on Saturday and it was amazing. There were so many people there. I almost started to cry when I saw everbody walking down Garfield in their blue shirts.


They had a lot of stuff for kids to do. They had games and crafts and face painting. They also had a pie eating contest which my husband and son really enjoyed!



Okay, I"ll admit, I enjoyed it too!


I took so cute pictures of Ethan and his girlfriend Ayla!

Here is Ayla pulling up her shirt for Ethan. HA HA

Here are some more cute pictures of the little lovebirds



I can't wait until our next buddy walk!

Buddy Walk

Tomorrow is our Buddy walk and I am so excited!!!!

Overheard today from my son. "Emma, throw those toys at my head. It won't hurt"

Of course, I had to investigate further only to find that my son was wearing a hard hat. Too cute!

My sweet boy

The other day I was at therapy with Ethan and I met a new mom of a 10 week old baby. She was still having a hard time with her son's diagnosis. I felt so bad for her. I remember being there too. The only difference is I found out during my pregnancy and she found out after. I have heard some people say that they are glad they didn't find out. For me I am really glad I knew. While at first it was hard, it did give me a chance to learn about Down syndrome before he got here. I also had my chance to grieve. I remember so clearly in my mind the day I got my amnio results. I really felt like I had just lost a close member of my family. I remember not being able to even drive to work because all I could do was cry. I can't imagine what people thought of me. Some family members thought I was worring for nothing. They didn't understand the pain I was feeling though. I tried my best to put on a happy face, but deep down I was a wreck. People told me "not to worry because as soon as I saw my son I would fall in love with him." I don't care how many times I heard it I just could not believe it. Now here it is 9 months later and I can't believe how much I DO love my son. I couldn't imagine my life without him. I feel so bad for that new mom and hope that she can get to the place I am at soon. As a matter of fact, one of my friends, who also has a daughter with Down syndrome told me at our support group meeting that she thinks I am going to be the president of our support group one day! I had to laugh at that. Watch out Lucy, here I come! My little man is still not sitting up yet. It is funny though, just as I am focusing on one thing he does something completly different to shift my attention. He is waving hi and bye now. I have to admit, he might be behind in his gross moter skills but he sure does not seem to be lacking in his social skills. Here is a little video of him waving!

conversations with a 4 year old.....

ABUELA: Little miss Muffet sat on a Tuffett

DAX: What's a tuffet?

ABUELA: It is a seat. Eating her curds and whey.

DAX: What are curds and whey?

ABUELA: It is kind of like cottage cheese. Along came a spider.

DAX: Was it a friendly spider?

ABUELA: Oh just forget it!




DAX: What if someone kicks me while I am at school?

ME: Tell them that it is not nice and you won't be their friend if they keep kicking you.

DAX: What if they won't stop?

ME: Then tell your teacher.

DAX: Well what if she dosen't make them stop?

ME: Then kick them back

GRANDMA: Dax, you don't have to worry, Jesus and his angels are watching over you and they will protect you.

DAX: What will Jesus do if he see someone doing something bad?

GRANDMA: Well, he will still love them and protect them. All you have to do is tell Jesus you are sorry for being bad and not be bad anymore.

DAX: Mommy, what happens if someone kicks me at school?

ME: Okay Dax, we are done.




DAX: Mommy, How will Ethan recognize me when I put on my costume?

ME: Where did you get your vocabulary from?




Anyway, Last weekend we took the kids to the cider mill. The weather was perfect and the kids had a blast. Ethan was so good. He really enjoyed people watching. While we were there I saw a little girl who had Down syndrome. I wanted to talk to her parents but I couldn't gather enough courage. I don't know why I feel so scared to talk to them. I have a fear that they will get upset at me or that they will say something like, "My child does not have Down Syndrome" And give me a dirty look.. I know, silly right? I secretly hope that they will notice Ethan and approach me. Here are a few pictures from this weekend.






This weekend is our first buddy walk and I can not wait. It should be a lot of fun. The weather is supposed to be 71 and sunny. I am excited for my family to see everything that goes on. We are having a FEDS meeting tommorrow to give us the details of the buddy walk. Which reminds me, I need a sweet snack for 50-60 people. Better get started!

What was I thinking????

Alright, today I decided to be brave and take the kids to Sam's Club by myself. What was I thinking? I had Ethan in his carseat in the front of the basket. Most of the time was spent trying to keep track of Dax and Emma. I got about half of what I needed then decided to call it quits. I just finish checking out and we are getting ready to leave and Dax somehow got in front of the cart and I rammed his heel with the cart. He starts screaming and crying at the top of his lungs. I am trying to console Dax and Emma starts crying that she has to go pee pee (remind me again why I decided to start potty training her?). Then Ethan hears both of them at it and he must think "hey why not me too!" so he starts crying. So here I am on the verge of tears myself lugging 3 crying kids and a shopping cart full of stuff into the bathroom. Oh man people must of thought I was crazy. So Dax and Emma go to the bathroom and we make it top the parking lot and everyone is unloaded and in the car ready to go then Dax says "mommy I have to poop" ARE YOU KIDDING ME!!!!! Sorry kid your going to have to hold it until we get home. Anyway, I had to wait until Dax got home from work and we went back and got the rest of what we needed. I will NEVER do that again!!!!!

AAAAHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My kids are driving me CRAZYYYYYYYY!!!!!!!!

AAAAHHHHHH

My kids are driving me CRAZYYYYYYYY!!!!!!!!

Check it out

Ethan's fundraising page is up for the buddy walk. Please check it out at http://www.firstgiving.com/ethanclarke Thanks so much!!!

Love, The Clarke Family

8 months old already

I can not believe it has already been 8 months since Ethan was born. It went by so fast!!! He is doing so well. He is rolling all over the place and ends up under the living room table most of the time. He is still not sitting up and dosen't even seem close to sitting up but we are working on it. He has great social skills and is always babbling, smiling and laughing. He has brought so much joy to my life. Still there are days that I wish he did not have Down syndrome but I will admit they are coming less frequently now.

Have you ever heard of the Duggars. She is pregnant with her 17th or 18th child and is in her 40's. It makes me wonder how someone can have so many kids and not have anything wrong with them. I hope I don't offend anyone and don't get me wrong, I love my little man but why can someone have 17 normal kids and I couldn't have three. And I was only 25. I guess I still struggle with this being my fault. I know it is just something that happened. I just look at my little guy and I want the world for him. It just isn't fair that he already has such a disadvantage in life. Even though I love him and see him for the amazing little baby he is it makes me sad to think that some people in this world would rather he not exist. I probably should stop rambling on and on. I think I may have already offended some people.

A few years ago I worked with a special needs girl named Paige, who loved to swim. One of my Aunts has an inground pool and was having a pool party. I asked her if I could bring Paige to go swimming and she told me she would not be comfortable with that. I wonder if she will think the same about Ethan.

On a much different note, please pray for me. I had quite a stressful year and a half (nothing to do with Ethan) and I think it is starting to catch up with me. I am feeling very run down. It takes all of my energy to make it through the day. I have very seriously thought about talking to my doctor about starting on some antidepressants but for now I don't want to go that route. Well thats all for now, I am going to try to update this more often, but like I said before, I am feeling very run down.

A year ago today

It has been a year since I got the call that I hoped I would never get. It is amazing how much my feelings have changed in a year. I put together a little montage. Enjoy!

Make an on-line slide show at www.OneTrueMedia.com

Personality

My little boy is starting to develop quite a little personality. He is very curious. He can't nurse for a minute without breaking free and looking around. Also when I hold him and I have something in my other hand he is always grabbing at it. You can just tell by the look in his face that he is really trying to process things. He also just started rolling over from his back to his belly today. Now we just have to work on sitting up.

It's coming up on a year

It has been almost a year since I got the call that told me my son would have Down syndrome. I will remember that day for the rest of my life. I don't know why it is such a defining moment in my life. I guess at the time it was one of the most tramatic things that had happened to me. I fast forward to a year later and I feel so guilty at my reaction. I look into my sweet boys face and I can't believe I ever cried over him. He has helped me to learn and grow. Sure there are still days where I feel sorry for him. I just want him to be like everyone else. And then I look deep into his blue eyes and realize that he is just like everyone else. He will do everything that my other kids will do. It might take him longer but he will do them. Anyway, I can't help gushing over him. I just love him so much.

The other day, Ethan went to visit his friends Ayla and Evie. I met Ayla's mom Kadi at our first support group meeting. We were both pregnant and Kadi had Ayla four weeks before Ethan. I always tease that they are going to be boyfriend and girlfriend. Here are a few pictures of our day. I do want to add that Evie is going to be moving next week :( Ethan and Ayla are going to miss her.

Ethan has a new friend

There is a girl that goes to our church. She is 18 years old and also has Down Syndrome. She loves babies and always points to Ethan and says "baby." This past Sunday I let her hold Ethan. Her mom is very nice and asks me how we are all doing everythime I see her. Here are a few pictures.

Feeling a little sad.

Today my cousins baby came over to visit my grandma. She is a month younger than Ethan. I didn't realize just how much it would sting to see her doing so much more than Ethan. I know he is behind, I guess I just still had hopes that he would do everything on time. She is already rolling over and grabbing her toes, she is almost sitting up and grabbing things a lot better than Ethan, she is even holding her own bottle. I don't even know why I am comparing them. I know every baby is different and I love Ethan for who he is. I just have incredibly high hopes for him. He recently had his 6 month check up and the doctor put him at a 4-5 month level for his gross moter skills and a 6 month level for everything else. I feel so bad for him. I know he is a happy little guy and doesn't know that he is behind. My heart just aches because I want for him to be able to do everything that everyone else is doing. Anyway enough feeling sorry for myself. Next Saturday is our support group picnic. I am excited to see everyone but I am a little nervous.

Hi there

It has been a little while since I last posted. We got back from vacation and have been trying to get back into some type of routine this past week. Vacation was awesome. We did a lot of nice things. We spent time at the beach, went to Ripleys aquarium, had lunch at Hard Rock Cafe, walked around Broadway at the beach went to a waterpark but most importantly spent time with family. The kids were so good during the whole trip. Ethan enjoyed his first time in the ocean. Here are some pictures.

back home

I haven't posted in a while because we were on vacation. It was WONDERFUL!!! Ethan went into the ocean for his first time. He loved it. I will post some pictures and more about our vacation when I have some more time later.

My letter to God

Okay, I am going to get a little personal here. I was reading through a journal that I had and I discovered a letter that I wrote to God after Ethan was born. It was written in January 15, 2007

Dear God,
There are so many things that have been weighing heavily on my heart lately. First off, I want to ask for your forgiveness on losing my faith. When I first found out that my little boy was going to be born with Down syndrome I was mad at you. I thought I was being punished. It just wasn't fair. I was only 25 years old and was not even ready for a third child, let alone a child that was going to have special needs. I spent most of my pregnancy sad a depressed. I had to grieve the loss of my "normal" child. I was not so sure I could accept anything less. I was worried about how I would feel towards this child. Would I be able to love him? It was so hard to put on a happy face when deep down I was hurting so bad. Nobody understood exactly how I was feeling because I wouldn't talk about it. Some people understood that I felt sad here and there but deep down I was terrified. I was the most scared I have ever been in my life. I am so sorry God that instead of turning towards you for comfort, I turned away. I guess my pregnancy would have been a lot easier had I not lost my faith in you. Now Ethan is here and I can't believe that I ever even questioned you. He is amazing and perfect. I never thought that I could feel this way towards him. I am so head over heels in love with this child that it hurts. I stare into his beautiful blue eyes and I can't imagine my life without him. Thank you so much for putting him in my life and for showing me that it is possible to love something I didn't think I wanted. I wouldn't trade this child in for anything. He is so sweet and handsome. I may not know what the future holds for my little boy but I do know that I am putting it all in your hands. You have blessed me in ways I never imagined that you could. Thank you so much for Ethan's health and thank you so much for Ethan. I pray that you continue to keep him strong and healthy and thank you, thank you, thank you, for entrusting me to be his mommy. It means so much to me to know that I was chosen to be the parent of one of your very special children.

Love always,
Amanda

Almost 6 months!

I can't believe Ethan is almost 6 months old. Time has gone by so fast. It feels like just yesterday that I was crying my eyes out after getting the diagnosis. What a different person I am today. If only I had known that my life would be filled with such joy and happiness. That little boy continues to amaze me everyday.




On a much different note our friend Ayla, Who also had Down syndrome, had to have surgery. Please keep her in your prayers for a speedy recovery. Ayla is seven months old and had to have surgery to repair a hernia in her diaphragm that her stomach was pushing up through. Her mom reports that she is out of surgery and doing well.

Only 2 days until we leave for vacation!!!