Thursday, August 26, 2004-in my house

My daughter is 9 months old and she has Down syndrome. That may mean different things to different people but to us, it has come to mean strangers in our house coming to evaluate her. This is what I mean: First person, a nurse from Help me Grow came to “evaluate “ her. She said it was because I was breast-feeding, I know it was not because I am a young first time mom. 2nd- Help me grow service coordinator 3rd Board of MR/DD person 4th Family relations person from County 5th Public Health Nurse for BCMH 6th County EI specialist 7th FCLC EI specialist 8th FCLC grad student 9th mom from so called ds group 10th nurse from oxygen company to check on home o use 11th nurse to evaluate condition after hospital visit 12 nurse from children’s home care to evaluate for home therapy 13th home ot evaluation 14th home pt evaluation 15th new County EI (got rid of one cause thought too many people involved but was told to get services from county needed one so got another) 16th Board ot evaluation 17th Board pt evaluation 18th Board speech evolutions 19th Board nurse to evaluations for Calico 20th Board Director of Calico to evaluate for Calico (Calico is a special needs daycare and preschool ran by the county. There is no room for our little Elise, so the evaluation was a waste!) btw-Elise is doing fine

looking back.....Saturday, August 28, 2004

Saturday, August 28, 2004

Love me, Accept me, I am Yours
The day I was born my 8 year old big sister, Emily, was getting tested at a big hospital. She was taking medicine for a disease she has had since she was born called Juvenile Rheumatoid Arthritis. She has it in her legs and her eyes. Her medicine that helped her walk and see was making her liver sick. Grandma was so happy to tell mommy that Emily was ok and that her liver was better. But my mommy was sad and told them that I had a problem. My name is Elise and I have Down syndrome. After I went home, my mommy cried all the time. Sometimes she did not even want to hold me. One day my big sister, Emily yelled at my mommy. Emily said that it did not matter if I had Down syndrome and that my body was not perfect. She reminded mommy that she has JRA and that mommy still loves her. “Down syndrome…so what”, she said…”everyone has their own problems to deal with…I have arthritis and well…mom you know YOU could stand to lose some weight!” Now, my mommy holds me all the time. She still cries once in a while but I know that she loves me very much. I heard her tell my Daddy that she would do anything for me. If there is something that she thinks that I need, she will spend hours on the phone talking to people about how to get it for me. Daddy smiles at mommy and says, “you’re doing good honey”. My big sister is my friend. She was there with me on Christmas Eve when I was in the hospital. She slept in my room on the couch in her sleeping bag and made decorations for my room. She held my little hand when I had to have a needle stick. Emily knows…she goes to the doctors all the time and she has gotten many blood tests. Our family spends a lot of time driving to doctor appointments and a lot of time waiting in doctor waiting rooms. Emily likes to stay cheerful and she makes our mommy laugh. They have a joke about what a “doctor minute” is. When the nurse tells you that the doctor will be in to see you in just a moment, that really means in about 20 minutes and if they say the doctor will be in a minute, it means in about 30 minutes! Someday I will be old enough to tell that joke too and to laugh with them about it. Until then, I am just happy to be loved, held and taken care of by a family who is not perfect. But then again, who is? …Even our doctors can’t tell time!

here is the press release

FOR IMMEDIATE RELEASE

***PRESS RELEASE***

AREA DOWN SYNDROME GROUPS COLLABORATE TO HELP ITALIAN FAMILIES IMPACTED BY EARTHQUAKE

Families from Northeast Ohio Down syndrome organizations are working together with the Associazione Italiana Persone Down in Italy to help families affected by the earthquake on April 6th 2009 in that country. The majority of the damage occurred in the city of L’Aquila and the surrounding villages. Around 300 died and today, 35,000 are still homeless, living in tents. The families in Ohio and Italy may live an ocean apart and speak different languages, but many of them have the common thread of a loved one with Down syndrome.

A local mom, Dawn Brunkalla from the Down Syndrome Support Network of Stark Co, will go to Rome in September to visit her husband teaching with WalshUniversity’s Rome Experience. While in Rome, she will personally meet with officers of the Associazione Italiana Persone Down. As a gesture of support and friendship, she will present donated items for the families affected by the earthquake. “It is important that families support each other in time of need. With the Down syndrome termination rate as high as 90% in some areas, fewer families are choosing to have children with Down syndrome and the rest of us need to show that they are not alone and that we care and are supportive”, says Brunkalla.
Assisting in the effort is the Down Syndrome Association of the Valley (DSAV). “It isn’t often that you have the opportunity to help people in another country. We are happy that Dawn has spearheaded such a noble endeavor and are pleased to help these families.”

To make a monetary donation for earthquake relief make checks payable to:
NIAF/ Abruzzo Relief Fund
The National Italian American Foundation
1860 19th Street NW
Washington, DC 20009
Or
American Red Cross/ Abruzzo Earthquake Relief
P.O. Box 37243
Washington, D.C. 20013
###

NE Ohio families connect with Rome Down syndrome group

While in Rome, I am going to meet with an Italian Down syndrome group called the ASSOCIAZIONE ITALIANA PERSONE DOWN. As a gesture of good will and solidarity, I am going to backpacks filled with letters of friendship and items for some of their families who have been affected by the April earthquake. Several groups and families from NE Ohio have contacted me wanting to help. On April 6th 2009 a major earthquake occurred in central Italy. The majority of the damage occurred in the city of L’Aquila and the surrounding villages. Around 300 died and 50,000 were homeless. Today, there are still 35,000 homeless living in tents. The Rome office will give the items and well wishes to their office in L’Aquila.

With the Down syndrome termination rate being almost 90%, I believe that people need these postive connections.

She stood tall and calm

Today something happened- something totally unexpected. My 7 year old spoke up in support of her sister. Now she has always been her sister’s advocate trying to carefully read labels and asking if products have gluten, holding her hand in parking lots. She IS a great big sister. Today was different because today there were others involved; she had a choice to remain silent or to speak up and speak up she did. We were at the library which is our favorite place to spend an afternoon where apparently two boys were laughing at her little sister. Her little 5 year old sister was playing with puppets and I guess the boys were making fun of her and so she asked them to stop. She told them that she has Down syndrome and they should not laugh at her. She then came over to get me and while I while still trying to figure out what was going on, I heard her say to the now embarrassed and very quiet little boys- I told you that my sister has Down syndrome and it is a disability and that means that you should not make fun of her. Now I understand what had transpired. I looked at the boys who looked at me with an uneasy nervousness and I quietly asked them if they had any questions about Down syndrome and they both meekly said no. I then told her that everything was ok now and took a small turn into the adult nonfiction and fought back tears. At that moment I loved my 7 year old more than I thought I could love her—I saw in her stance and her words passion and strength beyond her 7 years. She stood tall and calm and firm. My youngest who happens to have Down syndrome has many gifts and one of them being that her very existence brings out the best in our family.

strike

Did you ever go on strike? Did it work in getting what you wanted? Some go on strike for better wages. Some go on strike for safer working conditions and better benefits. I went on strike for a better relationship with my mother and brother. Actually, this strike has been going on now for three years. Sometimes strikes cause disruption and turmoil. They have been known to disrupt the state of commerce, to ground planes and to stop productions. My strike is different because it hasn’t affected anything. No one has noticed. Everything is the same. Some might say, why still strike? But it still goes on in the hopes that one day, my strike will matter and that they will see, they will be effected. I think this kind of strike can last a long time….a real long time.

walked again-
Today I received the letter saying I did not get the job and also 2 others told me that they would not be asking me for an interview. It is getting so hard to keep my chin up. The look on Kai's face hurts the most....I wonder how long he still will keep believing in me. Emily yelled at me and told me to stop blubbering. This time her crassness hurt.
I tried my best but it wasnt good enough. Not sure what to do next. At this moment I want to quit is all- stop all of the Ds support meetings, stop the volunteering, stop it all. I am angry.

walked

Walked today with Kai and Polly.-

Never really was a Jackson fan but I have to say I watched the memorial and it was very moving. The poem from Myla Angelo was so apporpriate and to see Michael's daughter Paris tell the world what a great father he was , just made him so seem so real and human to me.

Walked Polly today. If I would just walk her every day, I would HAVE to lose weight. When I was a young girl, I would see overweight women and tell myself that if I ever would get that fat that I would kill myself. Now here I am…but I don’t want to die...I just want to be thinner. So, we will walk walk walk!