Thanksgiving Vacation

On Wednesday I had to go to Delaware to pick up my older nieces and nephew (they are 16, 14, 13 &12). I dropped Brendan off at my mom's work because I drive a minivan and can only fit seven people in it. When I dropped him off Brady was very upset and cried for almost a half and hour. I pick the kids up and went back to my mom's house. Everyone visited for awhile and then we all went to my house. We heat our house with a wood stove and the upstairs sometimes doesn't get very warm so we set up mattresses in the living room for everyone to sleep like a big sleepover.

On Thursday we went to my mothers for dinner and had a great time. We ate dinner, played cards and just enjoyed each others company.

On Friday, Jessie, Brendan and my nephew Mac left for the eastern shore to go hunting. Myself, Katie, Brady, Myndi, Cora and Kirsten headed to there house in Delaware. We got there around 2pm and by 4 pm my kids were driving me crazy. I was supposed to stay until Sunday but I woke up Sunday morning with my monthly friend (.) and the kids were still driving me crazy so we packed up and hit the road around 8:30 am.

On the way home Brady kept crying about getting out and my cramps were so bad I thought I would die. We were going through the drive thru at Mc Donalds and Brady of course got out of his car seat and I was dying with cramps so I parked the car and began to cry. Brady just started laughing at me and then realized I was not faking and said mommy stop crying. Katie of course was being an angel. She is very good in the car unless she is sitting next to someone and then she has to irritate them. We proceeded to head home and ended up stopping at Jessie's mom's house. We stayed the night there so I wouldn't have to worry about starting the wood stove to warm the house.

Well today Jessie and Brendan came home early and we really wanted to go get our Christmas tree but it is very rainy so it will have to wait until another day. But I can't wait to decorate.

Another crazy night

Once again I am having a crazy evening. Katie has been into everything since she got home from school today. While I was on the computer trying to find out how Jessie can get a replacement card for his hunter safety course he took 17 years ago, Katie decided to pretend she had to go to the bathroom so she could get into stuff. I was looking stuff up when I heard Brendan yell. Katie and Brady were dumping a bottle of stool softeners down the drain. This isn't the first thing to be dumped down the drain, last time it was a whole bottle of peroxide when Jesssie was home with the kids. That time I had to call poison control just in case she drank any but luckily she didn't. I pray that everyday is a step closer to being sane again.

What I am thankful for

With thanksgiving approaching fast I have been thinking a little about what I am thankful for.

First and most important I am thankful for my family each member for a different reason. First my mother because she is always there when I need her and she is truly my best friend.

Second for my dad, he is not my birth father but he is the only father I have ever had and I couldn't love him more if he helped my mom create me.

Next for my husband he is best husband anyone could ask for, he puts up with my never ending attitude and loves me no matter what. And of course for my children, Brendan is so smart and such a wonderful help I don't know what I would do without him, Katie she brings a smile to my face everyday and has taught me to appreciate the little things in life and then there is Brady he might be nerve racking sometimes but he is just so darn cute.

I am also thankful for the friends I have and the friends I no longer have, each one has affected my live in many ways good and bad and made me the person I am today.

I hope everyone takes the time to think about what they are thankful for and appreciate everything and everyone in there life.

The ability to do anything.

Today I was sent an email from a person I new in high school and it got me to thinking. In the email she said "You are brave I don't know if I could handle having a child with a disability". I think of it this way god only gives you what you can handle although he pushes pretty hard sometimes. Also I don't think of Katie as having a disability because she will learn to do everything anyone else can it just is going to take her longer. When I look at her I don't see a disability I see the ability she has to do anything. To everyone in our family she is just Katie not the kid with down syndrome.

WHO MOTHERS THE CHILDREN WITH DISABILITIES

WHO MOTHERS THE CHILDREN WITH DISABILITIES

This year, nearly 100,000 women will become mothers of children with disabilities. Did you ever wonder how mothers of children with disabilities are chosen?Somehow I visualize God hovering over the earth selecting His instruments of propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger.Finally, He passes a name to a angel and smiles, "Give her a child with a disability."The angel is curious, "Why, this one, God? She's so happy." Exactly smiles God."Could I give a child with a disability to a mother who does not know laughter? That would be cruel." But has she patience?" asks the angel." I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy"."But Lord, I don't think she even believes in you." God smiles, " No matter, I can fix that.This one is perfect. She has just enough selfishness.The angel gasps,"Selfishness? Is that virtue? "God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes.. here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says " Momma " for the first time she will be present at the miracle and know it!When she describes a tree to her blind child, she will see it as few people ever see my creation."I will permit her to see clearly the things I see...ignorance, cruelty, prejudice.. and allow her to rise above them. She will never be alone. I will be at her side every minute of her life because she is doing my work as surely as she is here by my side"

The week seems to be getting better

Yesterday when Katie got home she was so lovable. All she wanted to do was give me hugs and kiss all night. I love days like this. When I see her smile, laugh, or give hugs and kisses it makes everyday worth it. Thanks for making my day Katie I love you.

My crazy life

So it's not looking like a good week so far. Last night Brady was eating Nerds (the candy). After spilling them on the floor I saw him putting one up his nose. I immediately went over to him and got them out of his nose and checked the other side and didn't feel anything. A few minutes later he was crying and my husband noticed his nose bleeding. I made him blow his nose and guess what more nerds came out the other side. Well we got all the nerds out and he was fine.

Today I was attempting to get a shower while he was watching a movie and the other kids were in school. I looked out the shower curtain into the living room and he had toilet paper all over the place. I asked him to clean it up and he put the roll of toilet paper away but left the rest where it was. I thought Katie was a handful until I had him. He just does the craziest things. He is always full of energy.

Mommy

The other night while I was cleaning up Brendan's room Katie came in and called me mommy for the first time. She has called me ma for the longest time and when she actually said mommy I wanted to cry.

Shopping

Not that everyone hasn't already figured this out but my life is a little chaotic. Yesterday Jessie needed to get new glasses so we went to Lancaster and I dropped him off at the eye doctor.

I decide to take the three kids to Toys R Us. I should of know better. Katie and Brady wanted to touch everything and of course Brendan wanted to show me what he wanted. Well needless to say we weren't in the store long. We picked out what everyone was going to get and went to the register. While I was trying to pay the kids spotted a pogo stick in the front of the store and immediately went there. I was trying to pay while yelling at them not to get on the pogo stick.

After picking Jessie up we decided to go to the outlets. While trying to shop Katie kept trying to run away. I was having trouble holding her hand and looking at stuff so I attempted to put the child harness one her, big mistake. She began to scream like someone was killing her and Jessie ended up taking her to the car.

After the melt down I was ready to go home. I definitely am not going to give up on taking them shopping but maybe next time we will only go to one store.

The chaos drives me crazy but the few time that I have went shopping by myself I have been bored and missed them like crazy.

Dinner

Dinner is always a crazy time at our house. Brendan will sit and eat but as for Katie and Brady that is another story. Brady doesn't want to sit and eat and is usually running around. This of course gets Katie mad being the mother she is. She is usually chasing him or yelling and signing eat at him. Once we get everyone to sit we have the problem of Katie trying to take his food or wipe his face.

We use to take the kids out to dinner but rarely do now. When we have tried to go out to dinner lately it is really stressful. Brady of course doesn't want to sit and is up and down in his seat and this makes Katie want to do it. We usually can get her to stay seated but it is impossible to get him to sit.

I hope and pray that one day we will have a nice peaceful dinner!

Speech

Katie's biggest delay is in speech. We think that this is due to her having a trach for the first 3 years of her life. She does say a few words like, mommy, ma, daddy, ready, sorry, eat, pop pop, mom mom and a couple others. She will sign some too. She is very smart but I don't think people realize this because of her speech delay. I worry because speech is the biggest part of life.

I see other children with down syndrome and they are talking and I think why can't she do it but I know I shouldn't compare but it is hard not too.

My Story

I am the mother of three wonderful children. My oldest son is Brendan who is 8 years old. My daughter Katie is 6 and my other son Brady is 2.

I had a normal pregnancy with my first child so when I became pregnant with my second I wasn't worried at first. During the beginning of my pregnancy I felt like something was wrong. My mom told me that maybe I felt different because I was maybe going to have a girl.

After I had my AFP test (Alfa fetal protein) done I got a call that I was at high risk for down syndrome. My husband, myself and my mom went for genetic counseling and were told that my risk for my age (23 at the time) should be 1 in 1000 but by my due date on the ultrasound they were 1 in 216 and by my due date of my last period they were 1 in 76. After the counseling we had a level two ultrasound and they notice that the baby had problems with the heart. We also found out at that time the it was a girl. We were giving the option of an amnio and they of course mention terminating, but of course terminating was not an option because this was our baby and we were going to love her no matter what. We went home and decided that we wanted to have the amnio done because I didn't want to wonder for the rest of my pregnancy.

We had the amnio done and were told that we would have the results in 7 to 10 days. On the 7Th day I got the phone call. The doctor asked me if I was sitting down and told me that the baby definitely had down syndrome. I was not surprised neither was my mother. I knew it in my heart that she had it from the time of the first call about the AFP test.

During my pregnancy I would go every two weeks to the doctors for echocardiagrams of the baby's heart. When I was 31 weeks and 4 days I went for my scheduled doctors appointment and my doctor was running late so I had to wait. I was also scheduled for an echo that same day and my doctors was taking so long that I had to leave without seeing him and go to the echo. When we went for the echo they told me that I needed to go right away to the hospital that I was going to deliver because the babies heart had got worse. When we arrived at the hospital I was told that due to the size of the babies heart I would have to deliver. They also said that if I went to full term she would not make it and that there was a good chance that she wouldn't make it if I delivered now. This was on a Friday and I was told that they were going to give me shot for the babies lungs over the weekend and induce me on Monday. I was induced Monday and did not deliver until Tuesday.

Katie was born in June 18, 2002. She weighed 4lbs 1 oz and was 15 1/2 inches long. She was taken immediately to the NICU and put on a ventilator. She has ups and downs for her first week and when she was 9 days old I got a call early in the morning and was told that they were going to do her open heart surgery right away. Katie has a variant of Epstein's Anomaly. She also had a small ASD. They told us that Katie had a less than 50 % chance of making it through the surgery but she was a fighter and did very well.

For the next 7 weeks they tried several times to take Katie of the vent but had no luck. When she was 8 weeks old they gave her a trach. She spent her first 11 weeks in the hospital and when she came home she had a trach, oxygen, feeding tube and various machines to monitor her.

She was in and out of the hospital for the first few years of her life. When she was about two she started to only need oxygen when she was sleeping. She had her tonsils and adenoids out when she was 2 1/2 and when she was 3 years and 1 month old she had her trach removed. After removal of the trach she no longer required oxygen.

Katie is now 6 and in 1st grade. She still has medical issues and will require another open heart surgery to replace her value but she is doing great.