Guest Post: Meet The Smiths (Day 14)

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: Great Expectations (Day 7)

Day 7: Guest Blogger- "Great Expectations"

As part of the 31 for 21 campaign, I have decided to add guest bloggers to the mix. Today, I have Donna Johnson who blogs over at Loving Life. Donna is the mother of two children. Her youngest, Katie, is three years old and has Down syndrome. I met Donna a few months after the birth of Eslea and together with a core group of five other families we have formed the first DS support group in our area.
Take time to hop over to Donna's blog when you have a chance. She has also accepted the 31 for 21 challenge and I know she would love your comments.
Speaking of hoppin'...
Don't forget about the blog hop on the 21st. Giveaways and so much more to come!
I'm always looking for guest bloggers so if you think you have what it takes to write a post for Crazy Beautiful Love (and I'm sure you do) or the new blog I'm working on (The Designer Gene Club), just click here to find out how.

And now....

"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



Guest Blogger: Helping to Find a Voice (The Lindsay Foundation)

Lately I find myself thinking more and more about Eslea's future. I'm not referring to graduation, friendships and other topics I often write about. More so I am thinking about her medical and therapy needs. I am blessed to have a job that carries wonderful medical coverage and thankful every time I get a therapy bill that has been paid before it even reaches my hands.
Speech therapy, occupational therapy, physical therapy, ENT, cardiologist, eye exams, and the list goes on. There is never a day I think for even a second that I would trade Eslea for million "typical" babies. She is worth every dime I spend. Yet, again, I worry about her future. More and more lately I hear stories of people with designer genes that lose coverage as they get older. Companies begin to drop coverage, bills start to mount. Eslea may not need help right now, but maybe in the future.
I depend so much on her services and fully believe that without them she wouldn't be meeting all the wonderful developmental markers.
What about other children with special needs? There are those that need services yet insurance denies coverage or well, the hundreds of other reasons why a medical service is lacking. What do they do? What will we do when it happens to us?
There are organizations out there that think about such things. They focus on our special kids and the long term care that they may need. Through donations, fundraising, and grants they find ways to help children reach their medical goals. Once such organization is  The Lindsay Foundation. This foundation is applying for a grant...a huge grant. They need it so that they can continue to help children, like ours, that need them.
For the first time I have a guest blogger. Mary Clare Tarpley is a real life and blogger friend whose family has personally been impacted by The Lindsay Foundation. I ask that you take time today to read her story and hopefully you too will feel moved to help this wonderful foundation. Your simple daily vote can mean the world to so many more children....including one like Mary Clare's son, Luke.

Finding and Funding Luke's Voice

Guest Blogger: Mary Clare Tarpley

I always thought that we had pretty good insurance, that is...up until my child was diagnosed with Apraxia of Speech and needed intensive speech therapy.  I received the first denial from UnitedHealth Care soon after my son had his first speech therapy session and  thought it was just a coding error on the submission.  6 denials and 4 appeals later, I now know that it wasn't a coding error.  UnitedHealth Care just flat out refuses to pay for any of the speech therapy that Luke needs to be able to communicate.  And before I get on a soapbox, I will get to the point.

To know that your child needs something and that you can't provide it for them is probably the worst feeling that a parent can have, a feeling of complete and total helplessness.

This is a feeling that I hope none of you will ever have to know. 

When realizing that our insurance company was not going to budge or even provide some speech therapy, I made it my mission to find a way.  If it meant that I would have to tell our story and go out of our comfort zone and ask for help, I would do it.  Pride has no place when it comes to the health and well being of your children. 

Enter The Lindsay Foundation and Laurie Hammond McMillan.  Laurie fought insurance companies for the 15 years of her daughter Lindsay's life.  She knows what helplessness feels like and after losing Lindsay, she formed The Lindsay Foundation so that no other family had to experience it.  The Lindsay Foundation's mission is to help families provide medical treatment, therapy, and equipment for their special needs children. www.lindsayfoundation.org

The first time that I spoke to Laurie on the phone I felt an instant connection.  She shared experiences with me, advice, and inspired me to keep fighting for Luke.  I think we spoke for over an hour that first night.  The thing that resonates most from that conversation was one word. 

Catastrophic.

I had never considered Apraxia of Speech to be a catastrophic, before then. 

I even tried to correct her and say that what Luke had wasn't catastrophic,

But it was...and before that conversation, I had no idea the real definition.

Catastrophic illness is defined as any illness that requires lengthy hospitalization, extremely expensive therapies, or other care that would deplete a family's financial resources, unless covered by special medical insurance policies.

My child has a neurological condition that could have a good prognosis, IF he had the proper treatment. Treatment that our insurance company called a luxury.  You read that correctly, UnitedHealth Care actually said that speech was a luxury during a phone call.  EASY FOR THEM TO SAY....they have a voice.

The Lindsay Foundation has provided a grant in the form of intensive and frequent speech therapy for Luke. 

I can honestly say that he would not be progressing as well as he has been without this therapy and for that I am forever grateful.  I may have never been able to hear these little words, if not for The Lindsay Foundation's help.

http://www.youtube.com/watch?v=r7Hh7PZnqM8

Please take a moment and register to vote for The Lindsay Foundation in the Vivint Gives Back Facebook Contest.  Each facebook account that likes Vivint can vote one time per day until August 27th.  http://www.vivint.com/givesbackproject/charity/24

You can read more about Luke at www.maggieandluke.blogspot.com,

Unlocking Luke's Voice facebook page https://www.facebook.com/home.php#!/pages/Unlocking-Lukes-Voice/127569687314344 and www.unlockinglukesvoice.com.