It will be worth it all....

As I sat in church on Sunday and they were singing "It will be worth it all," the prayer teams were gathered at the front of the church fervently praying with people that needed that extra prayer. As I looked around, I noticed an adult male with Down Syndrome praying with one of the prayer teams. I cannot explain my feelings of that moment, but I realized that no matter how challenging some days may be, "It will be worth it all."

Got Milk??

I have been MIA for a while now, so I thought I would take a moment to update everyone on the goings on in the Mays house.
Whew! It has been a crazy few months.
Emma is doing awesome in school and comes home with new words every day. She looked at me and said "Duh" the other day when I asked her a question. I wanted to laugh, but tried to keep a straight face as I told her that was not nice. I am so thankful for the school district we live in. Halloween was a blast around here. She absolutely loved trick or treating and was the most delicious cookie ever!
Sweet story for you all. Emma has a boyfriend, Owen. We call him Owie and she has a picture of him on her bedside table. I walked in the other day and she was sitting on her bed with the picture in her hands. She was kissing it and saying "You sit here Owie." I got teary eyed because it was so sweet. The thought of them growing up together warms my heart!


We participated in the Buddy Walk under the team name Emma's Army. We had a wonderful day!! I hope we can do it every year!
As for me, I never knew school would be so challenging, but oh how I love NURSING!! I should have done this a long time ago. It is so rewarding to be with that patient that just needs a little love and care. I will be doing OB/Pediatrics next semester and I am soooo excited for that!

I will try to be better about updating! I don't know what I did with all my time before I went back to school......

Time for School

It has been a while since I have been able to sit down and catch up on the happenings in the Mays house. This past week has been a busy one for all of us. Emma started school this past week and what an emotional time it was.
I am not reminded every day that Emma has Down Syndrome, in fact a lot of times I forget. Our lives have formed into what we know as normal and we do not dwell on the fact that she has special needs. I was however, reminded this past week that we are on a different path than most, not a bad one, just a little off the beaten path. Emma started Early Childhood Learning Pre-school at the elementary school nearby at the young age of three. My girl walked proudly into that school with her backpack on and was ready to learn! What a proud and sad moment that was! I thought I would be ready for it, but I don't think anything prepares you for your baby going to school. As we drove away, Greg looked at me and asked if I was okay. Of course my teary eyes were hidden behind my enormous sunglasses so I said I was fine. I knew that Emma would be okay, but it was hard to swallow that she is allowed to start school at the age of three when typical children do not start kindergarten until the age of 5 or older. I worry about her lack of communication skills and being able to tell me how her day was and if something is bothering her. I know it is natural for a parents to constantly worry about their littles, but this is one of those worries that reminds me that Emma does have special needs. This program will only benefit her and her progression in learning and I am hoping that she makes some lifelong friends. Let the fun begin!

Emma's Army

This year we will be participating in the Buddy Walk located in Nashville, TN. Emma has a page that has been created to help her raise money for the Down Syndrome Association of Middle Tennessee. This is an event that raises money for a cause very dear to our hearts. http://www.firstgiving.com/emmajmays

Dumpster Diving...sort of

Every day when Emma wakes up at 5:00am, I wonder what will peak her curiosity. She has a way of being very sneaky, especially when she knows I am going to tell her no. Over the last few days, I have caught her splashing water in the toilet, drawing all over her legs with an ink pen, and throwing away very important items in the trash can which has enabled me to add dumpster diver to my resume.

Part of this trash obsession that Emma has acquired is my fault. We have really been working on her following directions and so we do the happy dance when she takes trash and puts it in the can after I tell her to. I guess I will now check the trash every time I hear Emma clapping and saying "YAY!"

I walked into the kitchen to find Emma in only her diaper. Guess where her clothes were?? You got it, in the trash can! When I went to get my wallet out of my purse and it was missing, guess where I found it?? Yep, right again. And the stack of mail on the counter?? Use your imagination! I have found myself digging in the nasty trash can more over the last few days than I care to. It is disgusting, but how can you be mad at this sweet face?? It gets me every time!

For you, Nana

Today is my Nana's 85th Birthday so today is all about her. There is so much that I could tell you about her, but I will just touch on a few things. Nana is the matriarch of our family and the one that everyone turns to when they need to talk. She is the mother of three, grandmother to 12(Soon to be 19 if you count spouses), and great grandmother to 10 littles. She was married to Granddaddy for 62 years and shared a love with him that was unlike anything I have ever seen. She is a woman that knows what she wants and will tell you when she doesn't like something. She is everything that defines grandmother and then some. She is the host of lunch every Wednesday at her house and the center of every major holiday. There isn't much that doesn't involve Nana.
Nana's house is a safe haven for all who know her and even for those that don't. She is Nana to all who know her and even to those who have not met her.
I am very close with my Nana and consider my relationship with her to be unique, but
I am constantly in awe at the special bond between Emma and Nana.

There is nothing like it. Emma loves to sit in the floor and rub Nana's hose

and then to pat her on the back.

They share a special kind of love that is beautiful to see.




Nana, Happy Birthday and here's to wishing you many more! We all love you so very much!

Little Did I Know

Soon after I found out I was pregnant with Emma, I notified my supervisor that I was expecting. Some of the things that I was required to do as a Special Agent were not necessarily safe for a pregnant gal. I worked for an awesome agency that really considered the dangers of a pregnant woman out in the field and they put me on a special assignment during this time. The conversation that I had with my boss, "Mr. I", the day I decided to break the news still runs through my head now and then. After he congratulated Greg and me on our baby news, he asked me if I planned to return to the job (many women do not return after having babies). My response to him was that yes, I planned to come back to work unless we had a child that had special needs and would require extra care. Eerie huh? I think about that conversation and wonder why I would have even said that. We had no reason to believe such a thing would happen. Little did I know that exact scenario would happen and I would resign from my job as a Secret Service agent. Once I resigned from my job, I knew that I would most likely not return to a career in law enforcement, but I did know that I would like to return to work someday.

During Emma's stay in the NICU, I became extremely interested in watching the nurses around me and thinking about how rewarding their job must be. They were a much needed support system for us during a very difficult time, and their compassion towards the babies and their families was moving. I decided that when Emma was at healthy point in her life, I would return to school to become a nurse. I am happy to announce that starting in August I am doing just that!

I got my feet wet so to speak by taking Anatomy and Physiology I and II over this past year. It was very difficult getting back in the saddle and learning how to study again. I was the dorky old lady in the class that was actually interested in what the professor had to say. Hey, I got two A's out of it! I remember laughing at those people back in the day...

I got accepted into a competitive Nursing Program at a college in Nashville for Fall of 2010. I have to say that I am nervous, but oh so excited! I can't wait to be that nurse that can put my arms around a family that is going through a hard time and give them a great big ole hug, or laugh and smile with them when times are good! I know what it is like to be that family and I am looking forward to returning a dose of the compassion that was shown to us.

Little did I know that the conversation I had with my boss one day would not only become reality, but lead to a complete change in careers.

Stubborn She Is

When Emma was born, we were told by numerous people that she would be sweet and loving. We were not warned just how stubborn she would be. We realize that Emma is a typical 3 year old in most of her behaviors, but I am pretty convinced that her extra chromosome gave her a little extra umph in the stubborn department.

Emma recently went into the hospital to have her tonsils and adenoids removed. She also had a bronchoscopy due to a couple of cases of pneumonia she had earlier this year. We were told that Emma would stay at least one night for observation, but possibly several. I did not question the doctor when he said this because Emma has had issues in the past with her breathing after she has been under anesthesia. The smirk on his face should have told me he knew what was going to happen after the surgery. Note: He knows Emma pretty well....

The surgery went well and as expected she had some breathing issues, but once she bounced back she seemed ok. I fully expected Emma to get released the next day, but she had other things in mind. The doctor said she had to be drinking before he would let her go. Of course, she refused to drink, but she had no issues eating ice cream and pudding.

Emma also freaked out when anyone in scrubs walked in. Homer, Emma's care partner, was the only person that she would allow to take vitals. He actually got her to the point of holding her arm out for blood pressure reads without throwing a complete tantrum. This was very sweet, but I was ready to get home and didn't care for Emma to think the hospital as her social outlet.

Vanderbilt Children's Hospital has a great volunteer program. They really make an effort to make families and patients feel comfortable. Every night, someone with a guitar would come by and play music for Emma. Being that she loves music, this went over very well with her. In fact, she looked forward to it each night with the exception of the guy that sounded awful, and midway through the song she loudly announced, "ALL DONE!" That was embarrassing, but kids always say it like it is.

Day 5 rolled around and Emma still refused to drink. I finally convinced the doctor that I would get her to drink once we were home. I explained to him that she was being the STUBBORN Emma that we all know and that she was trying to win this game. He finally agreed to let us go home, but explained how important it was that she was drinking.

We get home and she still won't drink! We tried everything. We have been down this road with her before so we knew it was going to be a battle of the wills. Emma loves her Uncle Andrew and will usually imitate whatever he does so we got him to come over and help us with getting her to drink. They played a little game together where he took a drink and then Emma took a drink, except that Emma would not play the game once she realized how happy we were that she was taking sips.

The next day we were on our way back to the hospital because you guessed it, Emma would not drink! As soon as they admitted her and she was back on the same floor as just the day before. She started jumping on the hospital bed in excitement! WHAT?!? She is excited to be here? Oh no! I was not having that! All of Emma's nurses and Homer came by to say hello and Emma was thrilled to see them. Her doctor came by and gave me the "I told you so" look and then proceeds to tell me that record for a hospital stay after a tonsillectomy was 9 days. I quickly decided we were not breaking that record! The musician came by and played Emma her private concert, and still Emma would not drink.

A few days later, Emma still would not drink, and I was about to lose my mind. Stubborn was the word of the day from all of the medical professionals. STUBBORN! I had a discussion with her doctor and begged him to let us go home. He agreed to let us go home later that day if she would take a small amount of fluid, even if it was a milkshake. I put my game face on and prepared to win this match! Me against Emma! Now most of you that know Emma, realize that she can usually get what she wants. However, I was not losing this time. I started offering her everything that would count towards her fluid intake. I was all but pouring fluids down her throat. Once I reached the intake number, I had the doc paged. He came to the room and said I was one of the most persistent people he had ever met. Is that a nice way of calling me a B*&^h?? Who cares, just sign the discharge papers for Emma.

So we get home after spending way too long in the hospital, and the moment we walk in the house Emma says, "JooSH", meaning juice. Of course, she started drinking like a fish. She better be glad we love her and her stubborn self so much!!

Does it get better?

About a year ago, I met a mother in Sweet and Sassy hair salon who had just given birth to a baby girl with Down Syndrome. Emma was getting her hair cut and the mom was there with her son getting his hair cut. I noticed that she kept looking at me and then at Emma. It was about the same time that I noticed a hospital bracelet on her wrist. She then approached me with tears in her eyes and asked, "Does it get better?" She then proceeds to tell me about her sweet baby girl and how she was born with Down Syndrome and is in the NICU. To ease her mind about her precious daughterm I told her to look at Emma who was then eating a lollipop and proudly getting her hair styled. I explained to her that Emma does everything a typical child does and that yes, it does get better. We are now good friends and have been great support for each other. I could relate to the question she asked because we spent so many heartaching days in the NICU when I would ask many people the same thing. There were days when we didn't know what we were facing with Emma's health and then on the days when things were calm we would begin to worry about Emma's future. It is okay to feel whatever you are feeling, but oh my goodness does it ever get better!! I can't imagine it any other way!

Bare with me...

April 29, 2007 is a day that brought many changes into our life. Bare with me as I try to catch everyone up and bring you to where we are now.

Prior to April 29, Greg and I were both working as Special Agents in Washington, D.C. We had just received transfer orders to move. I was going to be assigned to the Field Office in Philadelphia, PA and Greg was going to be the Resident Agent in Charge in Atlantic City, NJ. We bought a house in Sewell, NJ so that I would be close to child care when I returned to work after having Emma. It was a long commute for Greg, but he was okay with that. We also picked that location because I thought Emma would be born in NJ and the choices of hospitals were much better. Sounds easy enough, right?
Little did we know, she did not want to be born in NJ. We sold our house in Alexandria and were going to stay with friends, Shelley and Jason, for a few nights until the moving truck made it to NJ. That few nights at their house turned into a month. Our first night there, Emma decided to attempt an entry into the world. I ended up being taken to the hospital via ambulance in Fairfax, VA. The doctors were able to stop delivery at this point, but put me in the hospital on bed rest. I was only 27 weeks at the time. We had several false labors between the time I was 27 weeks and then when Emma was actually born at 31 weeks exactly. My placenta abrupted so Emma was born via an emergency C-section. Things were shaky for a while, but I was finally taken to recovery. Greg followed Emma with her team of doctors to the NICU.

When Greg made his way back to recovery to see me, I immediately knew something was wrong. My husband, who is so emotionally strong, looked like he had been through the roughest of storms. I knew Emma was not breathing well when she born so I feared the worst. I looked at him and asked how Emma was doing. He took my hand and said, "She has Down Syndrome." I don't remember much after that except that it was a very dark night for me. I remember waking up in my room that night and hearing a baby crying down the hall. I was so mad. How could this happen to us? Why can't Emma be in the room with us? I needed to hold her. We had many people that wanted to visit with us, but we did not want to talk to anyone. It was not until 10 days later right before her heart surgery that I could even hold her. She was born with several medical issues, most related to prematurity. She stayed in the NICU in Fairfax, VA for 3 weeks and then we had her transported via ambulance to a NICU in NJ. What a diffucult, dark time that was for us. July 4th was the best day ever!! We got to bring Emma home from the NICU after 9 very stressful weeks.

We lived in NJ for two years. I resigned from my job, which was a no brainer, but diffucult to part from. I knew that Emma needed me full time. A lot of events that occurred during that period were a blessing in disguise. The house that we picked in NJ was very close to CHOP (Childrens Hospital of Philadelphia). Someone upstairs knew when we were on our house hunting trip pre-Emma that we would need to be close to this amazing facility. She had awesome doctors and therapy there during our time up north.

Greg was selected for a position in the Nashville Field Office in April 2009. We moved back to my home!! It has been such a blessing to have the amazing support of family and Emma is never short on attention...

Fast forward and Emma is now 3. I never knew a child with Down Syndrome could be such a blessing. She is the light of our lives! I will be very honest and tell you that it took me a long time to accept Emma's diagnosis. I didn't want to be told it would be ok because in my mind it wasn't. On the night Emma was born, a co-worker sent out an all page to every Agent in my office to announce the birth. He said in the page that "mom and baby are doing well." I remember being so angry about that because in my mind, I wasn't emotionally doing well and Emma was not physically well. I now look back on that and wonder how I could have ever felt the way I did that night. I know that it is all normal and that a grief process is okay when you have a child born with special needs.
There is nothing better than a kiss and pat on the back from my sweet Emma. She let's you know just how much she loves you even if she can't say it yet!

April 29 changed my life in so many ways. I went from Special Agent to a very Special Mom in a matter of moments and that is a job I would never resign from.