Our Story

October is Downs syndrome awareness month. And this is the year my daughter turns 6 this month. It's hard to believe we've come this far. I remember when I was pregnant, and I went swimming with my friend Tina and our kids. I wondered aloud if I would ever be able to teach this baby to swim. Today, I have no doubts, she will probably swim by herself next summer, if not before. She walks, she talks, she's potty trained, she knows her letters and colors as well as most kindergarteners. She takes dance and tumbling lessons. She is pretty normal.....and yet not. She takes more time to learn these things, and she is stubborn as heck about NOT learning to keep her hands to herself. She really loves to love on others....with her whole heart and hands.

We knew Desirae had DS before she was born. I had an amniocentesis, my doctor insisted because I was 41. We also had very extensive, modern ultrasounds and found out she was a girl before we knew she had DS. My doctor told me the results of the amnio at my ob appt in June of 2003. I was heartbroken. When Dave and Nick came home, they thought I had miscarried, I was that upset. They took the news very well, and propped me back up. Being pregnant turned into work at that point. And I was working full time on my feet all day as well.

I had the best OBGYN that money could buy. She was a gift from God. And she made sure we had the best medical care possible. I worked in a hospital kitchen, and one day she came through for lunch, and told my supervisor to "go get her a chair, there's no reason why my patient has to stand while she cashiers". He did. She also told me that "based on our experience, we cannot determine the happiness of another". Wow....that hit me to the soul. Because....

Growing up, we had a family friend with DS. I've referred to Wade before. He really shaped all my thoughts and opinions on the subject. Other than knowing him, I was ignorant. One day when we were playing, running about as kids do....Wade had to stop and sit down. He was born with heart problems. I sat down with him, and he shared that he did not like being different. As a child, I saw his pain, and felt very sad for him. Why I didn't see his joy is beyond me. Later, when we think about life and what might happen, and our options, talking with girlfriends, etc.....I decided that abortion might be a good option for these kids. They should not have to suffer our society. Did you know the brain is not fully developed until age 25? And then it develops in the directions that we take it. I never gave the subject any more thought than I did in my teenage years.

So, one of the people you first talk to is the "Genetics Counselor". And there's more tests, fetal echo cardiogram, extensive ultrasounds that weigh and measure each organ in the baby, monitoring for growth and any developing defects. When the genetics counselor saw us....for the very first time, she had never met me before, she automatically asked....first question....Abortion? Dave and I hadn't seriously talked about THAT. It was the moment of reckoning. And I burst into tears. Dave put his arm around me, and said to her "that won't be happening". It was very odd....she really did not know what to do with us after that point. We asked questions that she couldn't answer. Finally we asked for recommended reading. She got on her computer and googled books on DS. Later I asked the specialized OB doctor (not my regular OB) how many people abort and he told me that it was my own personal decision and I didn't need to know what other people did. I took that at face value. It wasn't til after Desi was born that I learned the abortion rate is about 9o% or higher.

People assume that I am conservative, pro-lifer when they hear that I knew Desi had DS from an amnio. Well, I'm certainly not pro-abortion! I had a talk with a friend recently, we share the exact same views and she calls herself pro life and I call myself pro choice. It was a good laugh, because it showed us how limiting that "label" is and what WE attach to it. Recently I heard someone refer to herself as moderate pro life. I liked that. Maybe I can be a moderate pro life person. Labels become who we are in some ways. Changing the label feels like putting on a tank top in the middle of winter!

The support of our doctors was phenomenal. Not once did I hear a negative of any sort. In August, the ultrasound showed a 2 lb baby instead of the expected 2.5 lbs, and the doctors took me off work. 3 weeks later the end of my 7th month, baby grew a lot, and that was my last ultrasound. We knew she had hair at that point! She was very active, irritatingly so! I used to complain during work, when I was tallying menus and calculating how much food was needed for the next day....I had to THINK and she wanted to turn somersaults.

The only negative came from a close family member of mine who decided my retarded baby was all about her. I was told "you don't know what it's like having to tell people about this". I guess someone had to feel the shame, but it wasn't me. Dave's family was great. His mom came and stayed with us for 10 days when Desirae was born. I was so grateful because I had a c-section and couldn't drive.

Desirae's apgars were 8 and 9. Good scores. She refused to nurse. Her tongue thrusts made latching on impossible, but she drank from a bottle just fine. I tried to nurse for almost 2 months before giving up, even had a lactation consultant and buying special shields, driving myself crazy. My whole life was try to nurse baby, feed baby, pump, over and over all day and night long. Finally everyone gave me permission to give up, so I did.

Desirae Faith is a perfectly healthy child. She's had 3 or 4 ear infections in her entire life. One thyroid test was abnormal. so we tested thyroid yearly until she was 5. She can't hear in very low frequencies and she has astigmatism, needing glasses. Pretty normal stuff. She just let her teeth be cleaned for the very first time yesterday. She has 2 cavities our pediatric dentist is keeping an eye on. She was toilet trained by age 5, with occasional back sliding and accidents. We joked that our puppy caught on to training faster than she did. We have a sense of humor about this, and we say things occasionally that the rest of the world might not think are funny. You know....I remember asking my son if he were stupid when he did a stupid thing. Well, Desirae does many stupid things, but that word is just not PC where she is concerned. Says who??? So, her parents aren't always PC and sometimes we just laugh when we "shouldn't".

We may not be PC, but God considered us to be good enough parents for her. It's a good thing I was already on the road to being the person that God would have me be...Desirae adds to the journey. The life lessons she presents are never ending. How else would I know what strengths and patience lie in reserve if I never needed to use them?

October is Downs Syndrome Awareness Month

There are those out there who are going to blog 31 for 21. I am not that ambitious! I promise to do nothing of the sort. I will try to focus a few blogs on DS in some way. Some of these bloggers blow me away with their dedication to DS. It's a fact in our lives that I accept, and with God's help, we "just do it". I borrowed that saying from Nike and never gave it back. It seems to fit my life nicely. I've learned that perfection is for the other guy. I just do it.

So you see my daughter or someone just like her-----PLEASE use the moment to educate your children on exactly what special needs means. Someone who has special needs has NEEDS! So often I hear "special needs" but I don't see that it's understood what those needs are.

My daughter needs friends. She needs good role models. She needs to be loved and accepted the way she is. She needs flexibility in the people dealing with her. She needs to be held accountable. She needs compassion. She needs forgiveness. She needs the other person to be the better person, because she is not capable of this. She needs someone to take her hand and show her the way, and give her a smile.

Please feel free to USE her and children like her to teach your children. I can't emphasize this enough. So often we teach our kids not to stare, not to point, to stay quiet, to be polite.....but we forget about life's lessons. Kids are naturally curious. And most kids know nothing about DS and other conditions that cause special needs. I've heard from children...."she looks scary", and "is Downs Syndrome a disease?". "How come she acts the way she does?". "It's good that she can talk at her age" (she looks younger than 5). "How come she talks funny?" "Is she going to grow up someday?" And sadder..."Desirae germs" from some really nice children. I've seen a cousin roll her eyes at my daughter. I've seen cousins come to her birthday party and not even acknowledge her presence.

Worse than the pointing and staring, is the not understanding that she is a real person who feels very strongly, and loves very deeply. So USE her as a teaching tool. If you want, you can ask me anything. You can say hi to Desirae, she would love it. Mom's with kids who have special needs want your children to be better educated on this subject. Better education means fewer "Desirae germs", and more real SMILES!

I'm done with the Blackberries!

These berries have been a thorn in my side for all of Aug and Sept. I finally gave up. The freezer is full enough. I gave up when I started getting hives from picking. I will have to wear surgical gloves in the future.

The above picture shows the guard canes the plant throws out. Huge thorny branches we have to cut back to get to the berries.

Pictures of the brambles under the berries. Tigerlily likes to run out and hide in these. Roy avoids them at all costs. Reminds me of the Brer Rabbit stories I read to Nick as a child.

The bushes were loaded this year. It was a beautiful sight. I have enough put away to make jam, to make cakes and cobblers, and I could have done way more, but it rained, and the rain dilutes the flavor and makes them mushy. They turned sour on the branch. Summer is over.

School Days

Desirae is modeling her new haircut.

Saying good bye as the bus comes

Here comes the bus!
Roy is so excited! Our girl is coming back home!

The dog walks the girl back to the house.

Where they play in the sand box together.

And Desi feeding her doll dinner to end the day.

First day of School

She is so Happy, she loves school and teachers and kids---and learning. I am so happy to find my house getting cleaner, having some free time. These past 3 weeks have been very hard. The constant multi-tasking took it's toll, and I just wanted to shut down. So grateful for school starting.

Desirae is napping right now. She came home just worn out from her second day at school.

The new camera/phone is great, and I have alot of blogging to do in the future.

Busy, Busy

August flew by, not sure where it went. It buzzed past me in a whirlwind. This gardening stuff is very time consuming. Watering by hand, because we are on city water and pay for it, takes 2 hrs. We've had 20 days of over 90 degree heat. In that heat, I have to water everything every day. Add the harvesting, and the cooking from scratch.....I discovered my days are centered around feeding the family. What happened??? Because of our holistic approach to eating, I imagine. Next thing I'll be raising chickens for eggs. This is the little house with the white picket fence, where I get to be a stay at home mom. I never dreamed it would be for a child with special needs who needs alot of supervision.

With Dave losing his job last October, and also our health benefits....I am now campaigning in my own way for Universal Health care. So, a portion of my time is devoted to reading and learning, and posting on my Face Book. I was afraid of doing this. I don't want to push people away or offend them, but God has made me fearless in this endeavor. I have a few friends who support this and that's all the encouragement I've needed.

I used to use my blog on Multiply in a more thoughtful way. With this blog, I discovered using pictures. In the future I hope to incorporate the two a bit more.

Desi starts school on Tuesday. I am so happy! The bus picks her up at 7 am and drops her at 12:50. That's almost 6 hrs a day of freedom! I can make jam starting next week! I love my girl to death. I also love my free time. This summer I had mostly girl, and free time was a huge luxury I didn't get but a few times. I think I might miss her a bit about the second or third week in.

Mr. Hoffman is finally employed full time. We should have health benefits in 3 months. I will never forget the fear factor of David knowing his meds were going to run out and not knowing how to get more. God was good, and we found out that he doesn't need meds, he just needs to eat right. But I pray for those who have to choose what to go without each month in order to buy their medicine.

I'm also excited that life will return to normal, and I won't have to pinch every penny twice very soon. I made a game of it, but at times, it was tiring.

The camera has been packed away since our last camping trip. I'm getting a new phone soon with a camera and a chip that will load directly into my computer. A Sprint upgrade. I am excited about it.

Well, laundry need folding, there's a bucket of plums looking at me and more to pick from the tree. Blackberries need picking. Life awaits....

My words to live by

My cousin posted her words on her site, so I'm following suite.

If

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";

If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man my son!
~~Rudyard Kipling



Prayer of St. Francis of Assisi

Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.

For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.