And Then

You find out you are pregnant. You begin planning. You plan not only how the nursery will look, what outfit they will wear home from the hospital, you also have an image of how it will all go in your mind. You probably even let your mind drift off to the future, what they may become, what they may look like. It seems like a logical way of thinking.

And Then

You get a diagnosis of Down syndrome. Now what?  That logical way of thinking becomes a distant memory. You fret and you research and you torment yourself. You think about what could I have done differently. You wonder if your child will ever live up to that expectation you had planned in your head. You grieve the loss of this child you thought you would have and look to the future in fear.

And Then

Your baby is born. Your new love is placed in your arms and everything seems so right. She is just
like any other baby. She has a cute button nose, she squirms and coos and sucks a little. Her beautiful almond shaped eyes complete this masterpiece that you are holding. Any fears or insecurities melt away. You are completely in love with your child, the one you fretted about, the one you questioned. The one that seemed to stir so much controversy over an extra chromosome. Perfect. Love. Cuddles. Life is good.

As you continue to walk your journey there are different things that come up. Her peers are all starting to roll, sit up, crawl, walk. Your precious baby seems to be so far behind.

And Then

You realize that it doesn't really matter. You realize that it is okay to slow down and enjoy the moment. You don't have to baby proof the house just let, you get to enjoy that baby stage just a little longer. After all, everyone says they grow up too fast and you have been given the precious gift of extra time. While your baby maybe needs a little extra help to accomplish some of these "common" tasks, you begin to learn just what we all take for granted. You understand how all of the muscles have to work together, how motor planning has to happen, and how much strength it takes to roll over.

Your character and understanding starts to build. You start to learn and become a different person. This little gift you were given opens your eyes and changes you. You look at your other kids differently, you parent differently, you look at the world in a whole new way. This fear that seemed to strangle you at the beginning is now turning into the greatest love story ever. You feel like you want to shout from the mountain tops about what a blessing that extra chromosome is. You begin to wonder why there is so much doom and gloom around a Down syndrome diagnosis.

You realize that there are more ways to do things than how you always have been. Communication seems to be the next milestone. While your little one is scooting and just starting to get into things, their peers are running and talking and sassing back to their parents. You start to feel lonely because you seem to think your child is so delayed.

And Then

Your child looks into your eyes and communicates a thousand things with you, in just one look. A look that maybe one of your other children have given to you, but you ignored. Because you don't have the luxury of them sassing back to you, you think out of the box and find a different way. Sing language becomes second nature to you. You break down words to hear every syllable.  You call and go on when they utter a sound. You get wrapped up in the excitement of every little step they make. You realize you communicate more with your non-verbal child than you do with your verbal children.

You become an expert in finding other ways, looking outside the box, turning every opportunity into
a learning experience for your child. You find the joy of being an active parent. While it is hard and exhausting. Sometimes lonely and isolating, your child walks up to you and gives you a hug. That low tone allows your child to wrap their entire body around you giving you the hardest most loving hug. And the they pull away for just a second and they smile. Their smile is so big and so bright it melts your heart. You feel like you are going to explode with love.

And Then

Someone says an ignorant comment to you. Someone reminds you what society says about your child. Uneducated and inexperience is talking. The fear, remember the one that you felt before you knew what Down syndrome felt like?  The research and the statistics try and the label, try to describe my child, but Down syndrome is not something you describe it is something that must be experienced and felt. Down syndrome has some stereotypes that just aren't true. And what if they are slow or can't keep the pace of a National Honor society student?  That means that they have something different,
something that couldn't be measured by a test, but something that must be experienced.

You understand that we all have something different to give. Some give their smarts while others give their smile. Both are important, both have a place.  One is not more important than the other, they are just different. One does not have more to offer and one does not have less, just something different.

And Then

You realize just how special the gift of Down syndrome is. Different, yes. Slow, yes. Smart, yes. Beautiful, yes. Stubborn, yes. Capable, yes. Determined, yes. Loving, yes. Emotional, yes.

The journey is filled with many different And Then moments. We work ourselves up, we compare to others, we set false expectations, we sometimes forget that not everyone has the privilege to experience Down syndrome. But often times when we can find the And Then moment we realize we are right where we are suppose to be. Down syndrome is only a label, it does not describe anything and it is an unique as the individual.

Don't Take That Away

A typical day for me requires me to get up extra early in order to get a couple of minutes for myself.  I stumble down the stairs, take a deep breath as I hop on my bike.  I usually get about 20 minutes before I hear the pitter patter of tiny feet waking up for the day.  Otherwise, I have to watch the time to make sure that my husband gets up in time to leave for work.  But for that 20 minutes I prepare myself for whatever may come my way during the day.

I walk up the stairs feeling refreshed and ready to start the day.  I usually am greeted at the top of the stairs by tiny eyes, a thumbs up and a request for milk.  I swoop her up and turn on the coffee machine.  I begin to help my husband get ready for the day as another sleepy set of eyes walk down the stairs.  The littlest one is whining that she wants to be rocked.  This is a special time for us and I want to make that happen as I want to serve my husband by helping him get ready too.

I sit down in the chair and rock her and rock her.  Sometimes we read, sometimes we play the I Pad.  Sometimes we just watch the fire and rock.  Sometimes she falls back asleep.  Sometimes she is sick and just wants mom.  The other girl is now awake and she wants to snuggle too.  The day has started and mom still feels like she can tackle any problem that may come.

Once we say bye to dad, we have to start our morning routine.  Usually, within several minutes, I feel defeated.  I struggle to get Lydia to use her shake vest.  As soon as I have wrestled her to the ground and I manage to get her locked into her vest, we start treatment.  Like clockwork she immediately says she has to go potty.  I grumble, but I unhook her and she runs.

I chase.  She does not like her vest, she does not like the treatment.  She is smart and knows that she can get out of the vest when she says that she has to go potty.  I make her go.  She fights me.  I am trying to keep the other girls on track getting ready for school.  I am exhausted.  It is only 6:00 AM.

This is just the morning.  The day is long and we haven't reached more than two hours of awake time.  What else do I have to look forward to today?  I get to do another treatment for her, I get to give her medicine, I get to talk to the insurance company, I get to drive her to another doctor's appointment, I get to write more goals for school, I get to complete a packet for continuing her insurance.  This is what I get to look forward to for the day.

My mind drifts back to days before Lydia.  I was busy with just about everything.  I had the schedule to volunteer, meet a friend for lunch, go shopping.  I had a chance to do more of what I pleased.  I did not have a constant worry on my hands.  My life did not seem to change near as much as it does today.  My friends and family seemed to understand me better.  My relationships seemed to be meaningful and I had more conversations with people and not just medical and insurance folks.

I understand that you may think that you are helping me by not "burdening me" with including me in planning this or volunteering for that, but you really are taking away the one thing that I am looking forward to.  I understand that my life seems busy and it seems like I am preoccupied, but I seemed to have buried myself in my child's issues because I have slowly been removed from committees and other opportunities as a way of helping me.  I seem to have become isolated because people feel I am too busy.  The problem is, no one has asked me.   

This is my life.  This is my daughter.  She has medical issues.  She has Down syndrome.  Sometimes it is very consuming and sometimes it may interrupt me from completing something I signed up for.  But I promise you, these opportunities are very important to me.  I promise you that I will give it my all because it will be the one thing that I can look forward to, the one thing that can take my mind off of something other than her medical issues, insurance, and appointments.

I also know that there are ways to do things unconventionally.  I mean that instead of having the meeting at school, can we meet at our home.  Instead of running errands by myself, can you come with me so I can just run in by myself and you stay in the car with Lydia?  Can you come and sit and rock her while I make the phone calls?  Will you be able to watch her while I work on something?  Would you be willing to let Lydia come with and I will give you all of my time? 

If there is one thing that I have learned about raising Lydia, is that there is always a way.  We as a society love to do things in a cookie cutter manner.  However, she has taught me how to reach outside of that box and to do things in another way.  And if you allow yourself to do that, you too will be blessed in a whole new way.

Please don't take that task away from me because you think it is a burden to me.  The truth is, that task allows me to feel like I belong somewhere.  That task allows me to look forward to something other than what I do every day.  That task allows me to push through the routine of each day to know that I get included in something else.

You don't have to understand the path I am walking, you don't have to know what I am going through.  But support me as I say I need to do this, I need to volunteer, I need to be involved.  Please don't be scared of what I am going through, please don't think these things are a burden.  This is my path and I need this.  I have realized her health is not going to change so I must adjust to our situation.  Please don't take this away from me.