it begins...

      I grew up in a small town where there wasn't a  lot of kids with special needs because there wasn't the resources they needed in the area, I don't have anyone in my family with special needs, or in my husbands family. I have never known a person with Down syndrome so bringing a precious boy in the world with Downs is very scary because I'm uneducated in this area. So I thought it was time to educate myself  I  read several books on kids with downs, their rights,  raising a child with special needs, other parents stories, I also talked to several other parents who have babies with Down syndrome (which was more for my support so I didn't think I was crazy and alone.) I quickly found that support was a priority because people who don't walk in my shoes  on a daily basis can shrug my feelings off, tell me they know how I feel (they couldn't possibly) and down right judgemental. 

      After doing my research I learned what Mason needed and what the military would provide. I got a phone call that I will be forever grateful. It was from caregiver, shes the one who decides all the care Mason needs and gets a team together basically shes the one with the answers to my questions and she takes care of business.Before she contacted me I made several calls, was given the run around, not getting answers and was feeling defeated.

       The day she first came to my house I filled out paper work, she asked me what I was most worried about. INSTANT tears, I held Mason close to my body and said "we moved here 3 months ago and I haven't been able to get answers, He hasn't started any therapy I'm upset, angry and worried"  She got up, got my a Kleenex, calmed me down by saying she can see that he is in good hands also just by  looking at him she could tell I have worked with him a lot and he is doing quite well. She promised me she would get everything going ASAP and god bless her she meant it. Before I knew it I had an occupational therapist, home nurse, physical therapist, speech therapist, care taker,developmental therapist in my house for weekly visits. I instantly felt a sense of relief and a HUGE appreciation to Masons caregiver.

Keeping the door shut...

When our door is closed we see Masons progress and we are SO proud of how he is doing and this adorable little guy he is becoming. Sometimes we open our door we see other kids younger then Mason crawling, starting to talk, standing, much bigger in size...some walking or just the little giggle we dont hear from Mason yet. A Sadness, and a  little jealousy comes over me. Everyone tells me "DONT COMPARE, DONT COMPARE"  but I would like to say its easier said then done. I know these feelings are normal and hope one day these feelings will go away.    This is a poem that is dear to my heart that I read often... I think I posted it in my blogs before but I feel like sharing again.                
                                                             My face might be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As god in the heavens

Looks down from above

To him I’m no different

His love knows no bounds

It’s those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I’ve chosen

Will help me get started

For I’m one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I’ll do as you do

But at my own pace.

Keep on keeping on...

     Holding Mason, talking to him he puts both hands on my cheeks, smiles and talks to me. So precious. Mike and I notice progress like smiling, rolling back to front, front to back, jabbering, and finally being able to hold his head up. Mason will be 8 months old in a couple of weeks which kids his age can talk,feed themselves, pull themselves up to walk and know what is going on around them. Last week at the doctors office we were given a check list of things kids his age should do and unfortunately we weren't able to mark off one thing.
      I was unpacking boxes yesterday and In one box it had Dylan's keep sake box which was full of cards,things received at the hospital, stories of his first year and everything he accomplished, and so much written in his baby book that I wrote on the borders,and on the inside covers. Also in the box was Masons baby book, Calender, and keepsake box. Tears roll down my face as the only things in his box is book after book, paper after paper about Down Syndrome,also phone numbers of people to contact for Downs, his baby book empty because he hasn't started all of his firsts, and there are only a couple Congratulation cards. (we mostly got questions, and "I'm sorry"
      Venting to my best friend, crying not because I am disappointed, or I don't love my child just simply because in some way I feel I failed my baby, I feel the joy of having Mason was taken away from me because of all the fear, negative feed back, and worries. I have recently become friends with ladies who have kids with Down syndrome and I feel selfish, unappreciative because they go through so much more. Mason stayed 2 weeks at the hospital while a friend of mines baby stayed 5 months. I know I will go through things that people never will and I wont go through things or can imagine going through certain things that my friends go through.
      Mike and I have learned to be patient,not compare Mason to other kids his age, don't take things for granted, and most importantly let Mason be his sweet little self and let him guide us. Keep on Keeping on...and always seeing the ups of downs! Its a learning process but I am learning and staying positive that I can make the best out of every situation.

Compassionate Reasignment Approved!

      Its the lastnight before the movers came, I stood at Mason's door peeking in on him while he was sound asleep. Reminding myself everything I do I do for my kids. I didnt want to leave Alaska things were great there but I wanted Mason to accomplish everything he could and have all the resources available which was not in Alaska. Looking around his room remembering when we first moved in the house how it was going to be an office not a babies room made me giggled. Remembering the excitement of preparing his room,remembering the fears of pregnancy,but also remembering the joy when I finally got to bring Mason home.
      Colorado Springs was where we were headed they have a downsyndrome organization, support groups, physical therapy, speech therapy, occupational therapy, pediatric cardiologist, and our family was 12 hours from the springs. I was looking forward for Mason to be in the hands of people who work with kids like him.
      Handing over my house keys Saying goodbye to all the people who stood behind me through my pregnancy,and looking down at Alaska as we flew off was emotional and very difficult, but kissing Mason as we flew off reminded me I was doing what I needed to do.

Doctor "Lets start with the face..."

      Doctor appointment after Doctor appointment has began to take over my life. Walk in, Sign in,Wait...repeat. Doctor walks in, "How are you Mrs.Killion?" the small talk starts. She informed me that she was soon getting out of the military and she was no longer going to be able to take care of Mason. She asked if it was okay for the doctor who was going to take over her position to sit in on this appointment. Well of course its okay I said. She leaves the room, comes in with the soon replacement doctor. Again with the small talk. "How are you? Nice to meet you."
      I lay Mason on the table, who is in his diaper only...and his normal doctor says " okay lets start with his face, what do you notice that is different?" The other doctor replies saying " his eyes are further apart, his nose is flat, he has a small round face..."
I looked at the two doctors in complete utter frustration. I'm thinking to myself  "What the hell do they think they are doing?"
      They continue on... "Do you see how he has a very thick neck, and his ears are lower? Now lets look at his hands" She pointed out the Palmer's crease (which he has on one hand) and also pointed out the chubbiness of his fingers. I couldn't even speak I was so frustrated and angry. One doctor picked him up, having him in standing position, laying over her arm and she says " Down syndrome babies have poor muscle tone and they "drape" like a wet towel." Just then Mason proved her wrong and shot straight up not "draping" I had to giggle. ha ha
      "WET TOWEL???" My mind was racing at this point I could think of a thousand names to call her and it wasnt going to be a wet towel. The appointment seemed to take forever, they continued on talking about his shorter legs, his feet how there is a gap between his big toe and little toes, talked about how their mouths are small, tongues are big and so on... I asked his doctor what the point of pointing everything out was, and she told me the doctor who is replacing her hasn't worked with a baby with Down syndrome and she wanted to point some things out. I couldn't believe my ears. They couldn't do this in the office after the appointment? All they looked at was his looks.What does that have to do with his medical needs? I knew this was the first and last time this doctor was going to see my son. Where is the compassion?
      Compassionate reassignment was brought up to me at the hospital months prior after finding out Mason did have Downs. I loved my friends, loved Alaska, and wasn't ready to move. The papers were in process of getting approved or denied at this point. After this appointment I realized it would be best to move, for Mason so he can have doctors who work with kids with Down syndrome and have all the medical needs in our area also. I went home had a talk with Mike about our appointment and how disgusted I was. He agreed Mason would not be going back to that doctor.

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Who is Lauren Potter?

        A friend told me Lauren Potter was coming to Alaska to do a speech and a meet & greet. To be honest I had no idea who she was. I was asked "Don't you watch Glee?" The answer was no. I saw the TV show being talked about on about every channel but didn't pay much attention. My friend told me that Lauren has Down Syndrome and she is a famous Actress. I began to be curious, so of course I Googled her. Instantly I became inspired, and admired her sweet face.
         On this show she wasn't a girl with special needs, she was rather mouthy, and funny. I loved it! I continued to research saw videos of her outgoing personality and awareness commercials her mom. Instant eye opener. I thought to myself what an inspiration, it was great to see such a positive look on Down Syndrome when I have quickly noticed only the bad is ever mentioned.
         My husband, myself and our two boys went to the meet and greet. The speaker announced Lauren, she walked out with her mom right behind her. She was short, a little round face, a big smile and a small voice. She couldn't see over the podium but she didn't care. She read her speech with complete confidence. Afterwards she answered questions. SHE LOVED THE ATTENTION! She was asked questions and if she didn't understand the question her mom would help her. At one point Lauren said "Im sorry about my mom, shes a mom that's what she does." she was referring to her answering some questions.
         A lady wanted to ask Lauren's mom a question about Lauren being bullied and how she went about to teach Lauren to deal with it. Lauren says " my mom taught me that enough is enough, If you cant say something nice, don't say anything at all." Lauren's mom took the mic and started talking about her experiences as a mom and how hard some situations were for her. My ears were open to what she had to say because I feared when my baby would be bullied.Her mom started naming all the positive things about Lauren "Well you can see she is nice, polite, friendly, outgoing...." Lauren grabbed the mic and said "Dont forget Smart mom." ha ha her mom replied back and said " and very humble."
        I was soaking it all in as I was looking around, the room was full of people with smiles on their faces admiring Lauren, not because of her disability but of so much more. I could see that Lauren was pushed to her full potential from her mom, and I am going to do everything I can to push Mason to his.
         After all the questions Lauren was ready to do meet and greets. We stood in line. Lauren looked up from signing her autograph, looked our direction and said "oooooo hiiiiiii!" at first my husband and I looked around curious to  who she was talking to. She continued to bat her eyes, and wave in a very flirty manner. Then it hit me, she was hitting on my husband!!!! hahaha. He instantly turned red, and looked down as  everybody looked his direction. She looked at me and said  " Wait Is that your husband?" I laughed and nodded.
         Her mom soon came over to us and apologized. She instantly asked how old Mason was, I told her and I told her that he had Down Syndrome. She looked at him differently, and became more interested in talking to Mike and I. We felt very comfortable and was asking questions about Lauren growing up, health issues, and any advice she could give us.
        She looked at us and said "Let him lead the way! Dylan is going to be a BIG help because Mason will want to do everything Dylan can do and it will keep Mason motivated." She told us Lauren was walking by 2 years old, which the doctors told her she wouldn't be walking until closer to 4. She told us to educate ourselves, and surround us with people who are going through the same thing or have went through the same experiences. She gave us her phone number, and email told us to call her with any questions and if we were ever in California to give her a call and we could meet up. This was the first person we ever talked to who had a kid with Downs. There was no judgement, complete understanding, and most of all she didn't feel sorry for us. One of the first things she said to us was "I'm going to tell you Congratulations because I'm sure all you got was questions, and "I'm Sorry" so... CONGRATULATIONS you two." It meant a lot to us because she hit the nail on the head with that statement.
        I have quickly learned to shrug off what people say, and try not to take things personally. I continue to learn, grow, and keep pushing through. I want nothing but the best for my son and there is no stopping no matter how hard things get.
        Lauren's mom told her daughter that Mason had Down Syndrome. Lauren grabbed my son and started kissing on him and telling him how great and special he was. We captured that moment on camera.  She wrote on her picture "I love you, Lauren" We put the picture in a frame and she will always be an inspiration to our family.