Guest Post: Meet the Smiths

(Posted from Crazy Beautiful Love)

A few nights ago I posted about a beautiful little almond eyed girl by the name of Renee. Tonight her parents are posting as my guests. They are not bloggers but I wanted them to have an opportunity to share about their experiences with a T21 rockin' toddler.
If you ever meet these guys in person, you can tell in an instant when their eyes fall upon Renee that they are desperately in love with her. They are proud of her; you can see it in every thing they do. She is their only child and so like all new parents, they are experiencing for the first time the unexpected joys of parenthood while also wading new waters with Down syndrome.

And now, without further adieu...Meet the Smiths.

In the words of Emily (aka mommy).....

A perfect representative of Down Syndrome means:  Beautiful, sweet, determined, loving, inquisitive, intelligent, teacher, shy, chatty, excited, strong, able, and just plain perfect the way she is...my Renee!

I was scared for her future after we were told over the phone when she arrived at the NICU in Albany, GA that she might have Down Syndrome.  What does this mean for my Renee, the child that I loved even before she was conceived?  My husband and I tried for 3 years with many miscarriages, fertility treatment, and finally surgery to conceive our little girl.  After a pregnancy filled with preterm labor, partial bed rest, and a footling breach presentation, Renee was born exactly at 38 weeks.  She had problems breathing and possible "seizure like activity".  She was transported to Albany while I was still in my c-section medicated fog.  I had to stay at the hospital for 3 days without my little girl.  My husband Todge, stepped up to the plate daily as he came to see me and then drove the 1 1/2 hours to see Renee and then came back to my hospital room to show me the pictures of the day and to provide me with updates on her health.  I was left sitting in my room surrounded by my friends just lost in my thoughts and research.  Everything that you are told is so negative...she will have delays in development, she may have eating problems, etc.  I mourned the loss of the child that I thought that I was having and fell in love with Renee (she is way better than the child I thought that I would have).  This past 14 months have been a challenge filled with Renee's 12 days in the NICU, Todge's deployment to Iraq, Renee's 5 hospitalizations with reoccurring pneumonia,  changing doctors, specialist in Jacksonville, FL (120 miles away), breathing treatments 24/7 for 4 months straight, changing from daycare to a great friends home because of Renee's health, physical therapy, speech therapy, occupational therapy, and Georgia Pines for hearing impaired families, all while working full time as a United States Air Force Paralegal.  Through it all I had the continued love and support from my husband, our families, and our friends.  Todge and I are Renee's biggest advocates and will do whatever it takes for her to have the best opportunities in life!  I would do it all over again in a heart  beat....as long as I have Renee in my life, I am a better woman and fulfilled mother!    

In the words of Todge (aka daddy)...
I was a little worried at first that having a child with DS; that it would end up being an almost insurmountable obstacle. I said to myself, how can you take care of this special little girl? You don't even have an typical child that you have taken care of and have not even had a decent track record with house plants or fish. But after the first time I looked into those piercing icy blue eyes, my mind was set at ease. Don't get me wrong, I still most likely can’t keep a house plant alive, but my baby girl Renee, she has blessed my life in ways I never thought possible. It is still a challenge being a new father but I don't really fear or worry about it anymore. I revel in the fact that I have a loving, healthy, rambunctious little girl. God has blessed Emily and I with Renee.  I would not change it for the world.

Make sure to come back tomorrow everyone where the linky should be up and running. I'm over the moon excited about a blog hop on the 21st to show support for all the designer gene beauties in the world...like Miss Renee.

Happy Friday!

-erin

Guest Blogger- Donna Johnson

For the full post, please visit Crazy Beautiful Love.

"Great Expectations"

Guest: Donna Johnson

“That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it and think how different it's course would have been. Pause, you who read this, and think for a long moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on that memorable day.”  -Charles Dickens, Great Expectations

I am sure many of you have had days which stick out in your mind as an "epic" day. It is a moment in time that creates a ripple in the timeline of your life. A day which you can define as life changing. For me, one such day came on the morning of a beautiful Easter Sunday.

Katie was born the day before Easter and less than 24 hours after her birth we would hear the words, "we think your daughter has Down syndrome". These words would be the formation of the first link in my life to a world that I had not ever been a part of. Three and a half years have passed since those first words were spoken to me and the formation of the links keep on growing. I am changed in ways I never dreamed possible. My chains are definitely made up of gold and flowers, tulips if you please. (Now mind you I have loved tulips long before Welcome to Holland came out. If you have no clue as to what I am talking about, google the phrase Welcome to Holland.)

My husband, Kiley and I have been married for 16 years. We both work full time, me in oncology and my husband in prison management. We were married for 4 years before our son arrived. Blake is 12 and in the 7th grade. It would be 9 years after his birth that Katie would arrive, a surprise baby after a wonderful vacation. Blake and Katie share the same type of heart defect, Tetralogy of Fallot. When I heard Katie had a heart defect too, I was so upset  to know that I had two heart babies.  Never mind the Ds diagnosis. Katie would be shipped off to the NICU in Florida due to her CHD diagnosis. We stayed in the hospital for 6 weeks during this time dealing with breathing and feeding issues. Once we got home, we worked on keeping Katie healthy for her heart surgery. Blake underwent heart repair at 19 months in an emergency surgery--he was undiagnosed until two days before his surgery when he underwent a heart cath. Katie had her heart surgery at 5 months of age. It was nerve racking to have to see both of your children undergo such a complex procedure; they are both doing wonderfully now. Blake even plays football for his middle school team! Katie also was diagnosed with a form of seizures called Infantile Spasms at 8 months of age. Of everything we went through, this was by far the hardest thing for me to handle. After several months of nonstop seizures, they were able to get her seizures under control and she has been seizure free since. I am happy to report that health wise she is doing amazing now. Really, the biggest challenge we face is that the 9 year age difference in our children is like raising both of them as only children! Talk about having our work cut out for us. I would do it again in a heartbeat though. I just don't want another 9 year age gap between them!

I have been asked several times to describe to other people what it is like living with a child who has Ds. To be honest, some days are good, some are bad, just like it would be had I not had a child with special needs. The National Down Syndrome Congress promotes a slogan stating "More alike than different.". That is certainly the case in our lives. We do everything any other family would do. We go on vacations, Katie goes to school, she likes to play outside, she loves to watch tv, she has her favorite foods, and she loves music among many other things. In short, she is living a regular life. But what about all of those other things you ask--things such as therapists, support groups, IEP's, early intervention, and delays? Well yes, they are part of our everyday life too, but we are not defined by those things. I like to think of our lives as being enhanced by these things. Society's perception of Ds for the most part has been one that believes our children are the iron and chain links. That we are bound to a life of doom and gloom, that we and our children are suffering, that they are a burden to society. Have we become so selfish as a society that we would put less value on a child who has special needs? That their life is not worthy because they have a little extra genetic makeup? I know that we face many challenges ahead, but what family doesn't? Who is to say that I won't have more challenges in life with my "typical" child?

I find it a privilege that I am allowed to raise my two children. I look at my daughter and son daily knowing that I am blessed. I have learned more about life in these last three plus years than all my other years combined.  You cannot see my thoughts or feel the emotions that come from my heart, but let me tell that it encompasses a very deep emotion within me. I can't imagine my children any other way, especially Katie having Down syndrome. I like to think that she is the best parts of me and her dad put together. I have never been more proud then to have her beside me as I navigate this life here on Earth.

Your links are what you make of them--will yours be made of gold and flowers or iron and thorns?

 A word to any expectant mom or newly diagnosed family---love your child first. Down syndrome is a part of your child, but is not all of your child. You may have many thoughts and emotions in those first few days, weeks and months after you are told--"I think your child may have Down syndrome.....". It won't seem like it at the time, but everything will work itself out. You are not alone in this journey and everything you feel is normal. Again, love your child first, all the rest will fall into place. Katie and the rest of us Johnson's can attest to that!

-Donna Johnson



Happy Down syndrome Awareness Month!!

Greetings everyone.  As we go into the fall season, we are celebrating many things here in Georgia.  Things such as fall football being in full swing, the cooler temperatures, the gorgeous changing of the tree leaves, and many fall festivals.  Did you know that this is also the month to celebrate the extra 21st chromosome?  Before my child was born, I had no clue.  This is just an extra way of really bringing Down syndrome into the mainstream.  We have to continue to be advocates heard on every level in order to promote acceptance and understanding of what Down syndrome is. 

We will be joining other teams for the annual Buddy Walk in Tallahassee, Florida next weekend (October 8th).

Pre-registration is now closed, but you can still register the day of the walk.  The event takes place from 9 am-12noon.  Please remember to wear sunscreen and be prepared for warm weather.  The walk is a fun mile.  We plan on walking together as a group.  For those of you who have pre-registered, shirts will be issued the day of the walk.  Please let everyone know to plan on changing into their shirts after we receive them once we check in that morning.  Concessions will be on hand for food and drinks.  For more information, please click here.   We look forward to representing our group and collecting ideas as we move forward in hosting our own walk here in Valdosta next year. 

In other news, the group had a fun outing to Leapin’ Lizards Fun Zone here in Valdosta for September. This is a great place in a safe environment to allow your children to play.  For more information on Leapin’ Lizards, look for them on Facebook or here. 

 

We are still in the process of securing a regular meeting place for our group.  Please continue to follow us here or on Facebook for updated meeting information.  Our next scheduled meeting will be November 12, 2011, meeting place to be announced at a later date. 

We also had a chance to represent our group in our first community awareness outing.  Moody Air Force Base held a grand opening for their new Child Development Center and invited us to be present at a table with our information.  This was a great way for us to help get the word out in the community about our group.  We networked and presented our group information to many different agencies.  Please look for an updated post in the next week as we highlight what these groups have to offer the special needs community here in Valdosta and the South Georgia area.  Thank you to Emily Smith and Polly Chase for going out to Moody to sit at the booth. Another great big thanks to Emily for helping to coordinate our group being at this event and thank you to Moody Air Force Base for allowing us to participate

 

Our table that we had set up at the event. 

 

Emily at the booth.  Her beautiful daughter Renee in the photo sitting in the chair.  Maggie is another one of our beautiful kiddos.  She is to the right of Renee in the photo.

 

Part of the playground at the Moody Child Development Center.

 

Emily and her brother Parker trying out the playground equipment.

As we continue to move forward with our group, please continue to spread the word that we are here for our Down syndrome community.  We have many great ideas for the future of our group.  Thank you for your continued support.  As always, if we can do anything for you, please do not hesitate to contact us. 

 

Happy Down syndrome awareness month!  Spread the Ds love!

Buddy Walk Oct 8, 2011 9am-12noon
Location--Tallahassee, Florida


Just a reminder that if you plan on walking with us, this Friday, Sept 23, 2011 will be the last day that you can register and be guaranteed a t-shirt from the walk.  Registration will still be ongoing even the day of the walk if you can't register before this Friday.  If our team can get 20+ walkers on our team, they will put our team name on our shirts too!  Even if you can't walk, consider supporting us and being a part of our team.  You can register HERE. 

Here is some of the fun things they have planned....

SNEAK PEEK AT EVENT ACTIVITES:

¨ Ring toss, bean bag toss, ball toss.. oh my! Carnival games with prizes for the entire family!

¨ Face Painting/ Temporary Tattoos

¨ Bounce House

¨ Art and Music Activities

¨ Fire Engine and “Sparky” the fire dog

¨ “McGruff” the crime dog

¨ Race Car (½ scale) display

¨ Springtime Tallahassee parade float- bring your camera and snap a shot of your family with one of the elaborate and majestic Springtime floats!

¨ Music and stage performances

¨ Special entertainment appearances throughout the day…. You don’t want to miss this!

¨ And more! All activities are free!

¨ Food and concessions will be available for purchase. Featuring: Street Chefs, mobile food truck specializing in fresh, homemade comfort food

Most importantly----you get to come out and help celebrate the 21st chromosome!  We would love for all of you to come and join us!

DSA Meeting

Please join us as we meet on Saturday, September 17, 2011 from 10 am- 12 noon at Leapin Lizards Party and Fun Zone.  If you need directions, please call them at 229-469-4406.   They are located at 416 Dale Drive, Valdosta, GA.  This is located one mile south of the Valdosta Mall on St. Augustine Road.  They have something for the kids ages 1 and up.  Cost is 5.50 for ages 1-3 and 7.50 for 4 and up.  Parents are free.  Please let them know that you are with our group at the door and you will receive a discount for each child.  Drinks and snacks are available for purchase there.  They are still working on their website--you can visit them on Facebook and here.  We look forward to seeing old and new faces!  If you have any questions, please feel free to contact us. 

September Meeting- Date Change

The September meeting for the DSA of SGA will be Saturday, Sept. 17th. Please note that this will be the 3rd Saturday this month, not the 2nd. As we are searching for a permanent home for our meetings, the change was needed for September. The time is still the same: 10am-12pm.
Exact location to be posted soon!
Please pass this information on to others.
Thanks!

August DSA of South Ga meeting recap

Hello everyone!  I am hoping to recap whatever we do/discuss at our monthly meetings for those who are not able to attend the meetings.  If you haven't joined us yet for our meetings, we welcome you with open arms as we fellowship with other parents/caretakers/siblings of those whose lives are touched by someone with Down syndrome.  We meet every 2nd Sat of the month from 10 am- 12 noon.  If a meeting is canceled or a special activity is taking place instead of the meeting, we will give you advance notice as they occur. 

We are gearing up to take a team to Tallahassee, Florida on October 8th, 2011 for the Buddy Walk.  The Buddy Walk was established in 1996 by the NDSS.  This is done to celebrate Down syndrome awareness month in October and to promote acceptance and inclusion of people living with Down syndrome.  We kept the name that we used last year--Title Town Tots and we added Down syndrome Association of South Georgia  to the name so that we could also get our group some exposure to those who do not know we are up and running.  The walk is from 9 am- 12 noon.  You can register your team members here.  Each person can register for a fee of 12.00--a shirt will be given to those who register ahead of time.  You can also refer your family and friends to the site if they would like to donate any funds in honor of your family member.  We would love to see you there! The Buddy Walk will take the place of the October meeting.  

We will also be announcing a special meeting that we hope to have in October.  Tammy Greenway of SOSkids of Valdosta is coordinating a joint meeting/group discussion concerning special needs trusts for our children. (SOSkids is a general support group for parents of a special needs child here in Valdosta.) We will have a lawyer speaking at this group and the kids will be able to play at a local play center here while the parents listen to the discussion.  Date to be announced as soon as all the details are worked out.

We are still looking for some adult volunteers to help watch the kids while we meet on Saturdays.  If you are willing to help out or know someone who would be able to help, please contact us.  We are fortunate to have some students helping us from the local high school too, so if you know of a teenager who is looking for volunteering opportunities, we welcome the chance to talk with them too.  

Next month we will present a technology presentation.  This will be full of great resources for those looking for the best apps for your child, websites to reference and groups to join.  Our next meeting will be September 10th, 2011.  Meeting place to be announced. 

We had a special guest join us at our August meeting, Stephanie Meredith, co-author of the book Diagnosis to Delivery--A pregnant mother's guide to Down syndrome.  You can find a link of her book here.  I actually read this book online months ago as I was looking for rescources we could share as a group for any new moms with a prenatal diagnosis.  It is an excellent book and we recommend this to any expectant parent.  Thank you Stephanie for sharing with our group.  We look forward to you coming to visit again. 

We have many things we are working on as a group.  Please continue to share any feedback you have with us.  We welcome all comments as we look forward to serving our Down syndrome community.