The year

The benefit of having a birthday at the end of the year is that I get to reflect over my personal year as well as the calendar one.  2013 is over.  Thank God.  Seriously, thank God.  I survived.  At times I didn’t think I would.  I have been broken down, knocked over, beat up and bruised in every possible way.  I have questioned everything from my skills as a mother, to if we would collapse financially to whether my marriage would survive.  I have literally held onto him for dear life as my son fought against death.  I have spent countless hours filling out paperwork, learning to use tubes to put food in and suck feces out and researching illnesses & diseases that sound like a foreign language.  I have spent more hours in hospitals and doctors’ offices than anywhere else.  The word “hospital” continues to send my heart sinking into my stomach.  I was not at all prepared for what this year brought me and looking back at my birthday last year and the happy, naïve girl I was, it makes me a little sad.  I was definitely in the “It’ll never happen to me” camp.  I’m more cautious and wary now.  I’m seasoned and have come through the fire; hopefully for the better.

I wish his story was different.  I wish he had been born healthy & strong.  I accept his Down syndrome completely, but I wish that we had left the hospital in July with our son in tow.  I wish he didn’t have a G-tube.  I wish I didn’t know so many doctors on a first name basis.  I wish I wasn’t still terrified for the issues and questions we have yet to face.  I wish I wasn’t waiting for the other shoe to drop.

Each year at Christmas, Jason sends out a Top 10 list.  He did it even before we were married.  It documents the highlights of the year.  This year we didn’t even order Christmas cards.  We ordered New Year’s cards.  There wasn’t a lot about this year we wanted to celebrate or even remember.  I want to put 2013 behind me and start fresh in 2014. I pray that at the end of 2014 we will do our Top 10 list again and maybe even a top 25.

When you experience the worst year of your life, you hope it can only get better.  That you’ve already hit rock bottom and that the rest of your life will be filled with sunshine, laughter, happiness and warmth.  I pray that’s true.  I pray that we can look back at 2013 with peace & perspective.  That we can say for sure that the best was yet to come.  I hope that when David is a teenager this will all seem like a distant memory that we hardly remember.  I hope 2014 is the start of the happy ending part of the story.  That David has a year of peace and health and Jason & I can create a home where he thrives.  So, I cautiously enter 2014, praying, hoping and begging that it will be better.  That 2014 is the year of healing and recovery.

2013 brought me my precious baby boy; my sweet, loving, cuddly piece of my heart.  He is soulful and beautiful.  He is quiet, peaceful & serene.  He’s a blessing.  His birth brought me new friends and a new perspective.  It showed me love and compassion in a way I never imagined.  We are loved and have been carried along our journey.  There will be more of that in 2014.  Our world will get bigger and David will bring more people into our lives.  2014 offers hope & promise and that’s what I’m clinging to and carrying with me as I celebrate my next year.

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Photo credits Dionna McCarthy Ryan+Dionna photography www.ryan-dionna.com

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The gifts

What a wonderful Christmas we had with our family!  My in-laws were in town and I was beyond excited to have my entire family of four under one roof.  We started our own family traditions for the first time and I have to say, Christmas is WAY more fun with a 3 year old.  Ella got so caught up in every piece of it and unabashedly believed in every story, magic, Santa, gifts and sparkle.  It was magical for us just to be around her.

I have to admit, as happy as I was, there was a part of me that was sensitive and emotional.  I was reminded that last year at Christmas we had announced our pregnancy to family and friends and we were excitedly thinking about the next year when our new addition would be joining us for his or her first Christmas.  We were so happy and blissfully innocent.  It’s emotional to look over this last year and how things have changed.  I feel as though I’ve been in a major car accident and am still a little shell shocked and wary, picking up the pieces.  It’s been a growing year and a year of many, many tears and surprises.

We are overwhelmed with gratefulness to be together and we are soaking up every second with our energetic toddler and precious baby.

The clinic

Last week we had an appointment at the Down syndrome center.  I have been anxiously awaiting this appointment since the day David was born.  I’ve said many times (and will probably say many more), the key to David’s success is to have a team working as a whole.  We need people who understand Down syndrome and all the complications that can come with it.  Even though David’s issues are more specifically medical, we need Doctors who ‘get’ the link between the medical side AND Down syndrome.

It was everything I hoped it would be.  We met with a physical therapist, a speech/eating therapist, a Nurse Practitioner, a social worker and the head doctor.  Everyone truly evaluated David first as a person, but secondly in conjunction with their co-workers.  They made a plan to meet with the feeding specialist, speech therapist, GI doctor and surgeon all together, since they think his GI issues are also multidisciplinary.  It was great to feel as though we were part of a team and a new ‘family’ and more importantly, as though people who understand my sons condition way more than I do are working together to give us the tools we need for success.  Overall, it was awesome and I left there on a high!

On a different note, David has been home for 3 weeks!  This is the longest we’ve ever had him home!  It’s been wonderful.  I can’t wait to celebrate Christmas with my family under one roof.

The line

The other day, on one of my Facebook groups, someone posted a link for Christmas card ideas to help spread Down syndrome awareness. I clicked on it, excited, but before I read the article I stopped. I feel like there is a fine line between Down syndrome and David. I’m not sure if that makes sense. I’ve mentioned before my struggle to ensure that he is my son first and his condition is always secondary. Yes, he happens to have Down syndrome but he also happens to have an infectious smile, a sweet heart and a gentle spirit. While I am excited about his future and anxious to raise awareness, I don’t want this to be what defines our family. I want him to be known first and foremost as a person. I don’t want to be the crazy lady no one can talk to because I’m going to bring up another statistic or another story about Down syndrome. There has to be a line. There has to be a point where we move on as a family & as a unit and not as a Down syndrome family and a Down syndrome unit. So, while this is the biggest thing in our world, we understand there is still a big world out there. Not everything we do or every conversation we have is going to revolve around Down syndrome. And that’s a good thing. Today, I’m drawing a line.
(* PS, the Facebook article was actually brilliant & I may just do it. It was the principle, not the idea *)

The look

Because I was a mother before I had David, I know that many of the things I feel about him are not exclusive to parents who have a child with an extra chromosome. The overwhelming love, the complete obsession, the desire to fight anyone who would say anything disparaging about your precious miracle; I feel all of those for Ella. One thing that has surprised me is how stinkin’ cute my son is. I know, I know I shouldn’t even think that let alone write it. But when I was pregnant I couldn’t imagine that I would look at David & see anything other than Down syndrome. I didn’t expect him to look like me, Jason OR Ella. I had very strict images in my mind of what he would look like & I grieved that he wouldn’t look “like us”. I am so happy I was so wrong about so much!
Not only does David look A LOT like Ella (see below for our version of “who wore it best?”) but I see both Jason AND I when I look at him. I don’t ever see Down syndrome when I look at him. I see happy smiles & a pointy little chin & the most sparkly eyes I’ve ever seen on a baby. I hope so much that this is the start of something in our family; that we don’t see an individuals disability first, but notice all of their amazing features & qualities. I hope that Ella won’t bat an eye and will be loving and welcoming of any friend with any number of disabilities. I hope that I become the kind of person I’ve always envied; a person with grace and warmth who reserves judgement & welcomes all.

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The knowledge

We joke that these last four months have been a crash course in medicine. We feel as though we have our Associate’s degree in medical terminology. We know more about the GI tract than we want to. We have dilated & irrigated ourselves right into expert status. I can rattle off medical terms I can’t spell & can drop them into daily conversation easily. The things parents do out of love for their children is animalistic; there’s nothing we wouldn’t do.
David is doing great! We have a goal & hopefully a discharge plan. Our house looks strangely similar to a medical clinic with equipment in every corner. We’re ready to care for our son & his needs at home.

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