Tuesday, March 15, 2016

The Road

Getting a prenatal diagnosis of Down syndrome was painful. I had already started to picture what life with my new baby was going to be like and I knew Down syndrome was going to change this imaginary life I had started planning in ways I was initially resistant to. I was going to have to deal with things I never wanted, walk down a road I never dreamed of going, and it was painful to have to face something new, to walk an unfamiliar road I didn't plan for. 

It's wasn't until I was actually on the road that I realized what it was really like.  That while covered in bumps and cracks and at points gapping pot holes that threaten to ruin you, there was so much more. With your head up and eyes not fixed on simply the road, you notice it is lined with roses and lilies and sweet berry bushes, and huge oak trees that shade you, and comfortable benches were you can rest. More importantly, it is scattered with travelers you didn't even know were down on that road, that help you over the pot holes, and point to the flowers and keep you so deeply engaged in conversation, community and laughter that those cracks and bumps that once looked so ugly and terrifying, hardly are noticed. And then to top it off, you have a pretty amazing person right at your side the whole journey, someone who you realize is a person separate from the bumps and cracks, who is the heartbeat of the road but not the road itself. With your head up, you can see them for all they are- an individual not a diagnosis, a personality not a stereotype, a unique and precious irreplaceable person in your life. 

It takes some effort to realize all this road has to offer. You have to lift your eyes up off the road. That can be easier said then done. I believe in a God who has a rhyme and reason for everything, a God with a master plan for a greater good as well as a plan for each and every life. Lifting my eyes up to Him comes naturally for me and therefore seeing above the road quickly came in view. However, not all people have a hope in a big picture plan. A plan or purpose above a different or difficult road is absurd, impossible or merely wishful thinking and therefore there isn't much motivation for looking up. I regularly make the mistake of reading comments on threads I know are bound to hurt me. I try to put my self in others shoes, understanding why they come to the conclusions they do because of the way they think, and when their thinking is very different then mine their thoughts are bound to sting my heart. Whenever someone posts something pro life regarding to babies with Down syndrome, there is always a nay sayer spewing comments with the "r" word, "burden" and inevitably the argument that it's not a life worth living, for baby or parent. And then often I find myself writing lengthy replies to their comments, hoping to show them another view point of the road, but then deleting them before ever posting. I reread what I typed, put myself in their mind and figure out exactly how they will argue back at me and because our core beliefs differ too much, my logic will never seem like logic to them.  I know my words will not change this persons perspective because they have their head down.

I wish I could say simply having a child with Down syndrome forces you to lift your head up, but that is not always the case. There are families who do view their child with Down syndrome as a burden, or regret having to care for an adult child. But it's a choice to keep your head down. I can't wrap my mind around not choosing to lift my head up. There is so much commotion and so much to see off, over and on the road! I live to wake up each day and see my Fiona. Her presence energies me while at the same time my love for her nearly paralyzes me. If my head was down I could be consumed with how far behind she is compared to other 5 year olds, how tiring and aggravating it is to have to fight for her to be included in the schools and for her to receive the type of education that will help her to be her best. I could be saddened by how her friendships are different then other 5 year olds, or her relationship with her brothers is different then it probably would be had she been born with 46 chromosomes. I could fear the future, knowing she may never live completely on her own, and that financially we will possibly always have to care for her, or someone else will. Many days, I do walk the road with my head down, caught up in these very real aspects of the road. But then maybe it's the smell of the roses, or a traveler's shoe comes into view, or more often then not God simply grabs my chin and pulls my head up where I see how much she has learned from last year, what all she has overcame and accomplished and how much her teacher adores her and invests in her. How nearly everyone who spends time with her adores her and invests in her. I see my three kids together, laughing and playing and my boys patiently waiting and helping their sister in the unique and perfect siblingship they have exactly how it is. I remember how lucky it is that my husband and I may never know the pain of empty-nest syndrome and look at the future with joy that there is a chance I may wake up every day of my life and be greeted by her smile.  And because I have faith in a God who is looking out for me, I have full confidence that he will provide for us- it may not look how my American standard of providing looks, but He will no doubt provide what we truly need. 

I am pretty passionate about the lives of people who walk down the Down syndrome road because I have experienced it first hand and can tell you from the road there is so much beauty. But I also know there are people on this road who are experiencing it nearly completely different then I. I don't think it has anything to do with the road, I think it's merely a perspective. You don't have to be on the road to have a perception of it- some people's perception of Down syndrome has slowly changed in the last few decades as advocates from the road have spoken out. We know people with Down syndrome are capable of so much more then they were once credited with when the right support and love is in place. From the government to churches to other private organizations to the Internet and Instagram, support in the US is endless, if your head is up you will find it.  And while I wish I could instill the hope of God in everyone, it is even getting harder to deny that a life with Down syndrome is worth living simply by all that we now know is possible. Organizations like rubysrainbow.org show us that people with Down syndrome are capable of post secondary educations, fulfilling jobs, and some times independent living. You will never be able to argue with someone who can't see the whole picture, but you can encourage them to lift up their head. 

I don't expect the human race to ever get to a point where one is happy to find out their baby has Down syndrome. It is not an ideal road to go down, and because of that there will always be an initial disappointment and pain. But I do hope that the human race grows to a point where they can overcome their selfishness and see what beauty there is in embracing a seemingly more difficult road. Especially the Down syndrome road, man it is almost always a sunny day over here :) Almost. 

Monday, February 23, 2015

Life With A Child With Down Syndrome

I had to dust off the cobwebs to write in this little space again. Its been quiet awhile since I have blogged. I have used this place in the past as form of therapy, as a soapbox, as a photo album, and to be honest, as a way to get validation at times. Well, I haven't needed therapy (well thats probably not true), and Instagram has become my place for a soapbox and photo album and I guess for validation too, although I hope I don't use it for that often.

So why did I decided to write today? Because my heart is broken. A life is gone, a life I spend every day fighting for, and Instagram doesn't allow enough space for me to say everything that I need to get off my chest.

Fiona is now 4, nearly going on 5. I didn't even look to see when I last wrote but I can guess she was maybe 2 the last time I posted anything about her on here. And while I never write anymore, this little blog still gets an ungodly amount of traffic stopping by. Key words like Down syndrome, Mosaic Down syndrome, clubbed feet and heart defect bring people by daily. I have thought about taking this blog off line, keeping it only for my own purpose because it documented a very emotional time of my life, but I keep it live for this reason- people are searching about life with a child with Down syndrome and this blog gives them a glimpse. It gives them a glimpse of a life I was not told about at first when I got Fiona's diagnosis prenatally. I was originally told "I'm sorry" and "I am sad to inform you". I was also told "you only have a few weeks to get rid of this problem if thats what you want". It was so painful to hear because although I was sad and it was not the news I dreamed about ever hearing, I had a baby, not a problem. My love for my daughter didn't change because of an extra chromosome, she was still a beating heart, kicking feet, little hiccups and wiggles inside my womb. She was still the same baby I had loved from the minute I found out about her, I just knew her differently now.  I wanted to take her extra chromosome away and fix her, the chromosome was the problem not my baby. But thats not possible so I sought out how else I could help my baby. It didn't take long for me to find the right support. Kelle Hampton, blogger at kellehampton.com, lived in my town and Nella was just a few weeks old at the time. I watched her in her little swing, the sweet half moon shape of her closed eyes as she slept, her chubby little cheeks and fingers closed in fists as Kelle took maternity pictures of my growing belly and I didn't feel as scared for my baby anymore. I found doctors who supported my pregnancy and called my baby by her name, Fiona, when referring to anything about her. I found doctors and friends and people  and blogs worldwide who were excited for me and gave me encouraging hope of what raising a child with Down syndrome really is like. A beautiful mixture of pain and wonder- much like all of parenthood is. We just kind of had a vantage point because we already knew most of the pains we would have to endure with Fiona's life, where who knows what kind of pain our twin boys will cause us in the future :)

Today, I read about a woman who seemed to not find the right support. Or maybe not. Maybe she found exactly the same support I did but choose to read it differently then I did. For her, she saw no beauty. She saw a life of misery and struggle for her child and her family. While I focused in on what was going to be positive about our future, she seemed to focus on what was going to be hard. Neither way is probably right- it should be all looked at together I guess for an educated decision. However, I wasn't making a decision, I was solely trying to help my baby live. This woman, she felt she had to make a decision. And to her, this life that she describes as a life- she describes how she longed for it, with numerous fertility treatments and IVF's to conceive it, how strong the his heart was, how beautiful and perfect his little feet were- was better off never being born then living a life with Down syndrome.

My heart is broken.

Its broken for this little boy who's life was taken away from him because someone else thought it was for his own good, while yet I look at my daughter who was created just like him and she couldn't love her life more.

Its broken for the father who wanted to keep him and had to support his wife as she took away his only son from him.

Its broken for the woman who is grieving the loss of this baby she wanted so much. She chose to say goodbye to a baby she longed for for years and she is dealing with the aftermath of taking a life, whether she is admitting it or not. While abortion is hard no matter the circumstance of the pregnancy, this one was a pregnancy that 10s of thousands of dollars went into conceiving, that the woman was enjoying, and that the woman wanted. My heart is also broken for her because I am sure she is dealing with a whiplash of hatred from women who feel as I do but lack compassion.

Its broken for the hundreds of families desperately waiting to adopt a child with Down syndrome in the US that could have had their son if other decisions with this little boys life had been made.

Its broken for this country in which promotes the euthinization of babies with Down syndrome and other birth defects by humanely, though thats debatable, taking their life before they leave the womb.

Its broken for our culture which does not value all human life nor respects that there is a God with a greater plan for life then we could comprehend.

Life with a child with Down syndrome is what you make of it it. There are aspects that are harder then normal, but there are aspects that deliver a beauty thats incomparable. We choose to focus on the joy Fiona brings to our entire family and circle of friends other then dwelling on these few things that are a little more difficult with raising her. Suffering is the last word I would use to describe her or any of the hundreds of people I know with Down syndrome. I haven't met people who love life more then those I know with the extra chromosome. If I had aborted my daughter, I would not only have robbed her of this life that she so greatly loves and lives to the fullest of her capability, but I would have robbed my self, my husband, and my sons of a joy so much more filling then happy could ever compete with. The joy of having Fiona in our lives.



Monday, May 26, 2014

A different memorial day

As I was falling asleep last night, I prayed that somehow I would wake up before the rest of the household this morning as, you see, most mornings, my alarm clock is a little head poking over the side of my bed whispering "mama".  I have little hope of a few moments of silence to my self ever in the mornings. Waking at 4:45am wasn't exactly what I was thinking, but my prayer was answered. My body is manifesting stress, even though I am trying to subdue it, in ways like sleeplessness. A huge chapter of my life is closing, and although I am beyond ready to move onto the next, my heart is heavy to say goodbye.

I know this move wouldn't be happening if she was still here.

That knowledge brings its own wave of feelings. A greater trust in God's ultimate plan, but also a deep sorrow that in a sense, I am leaving her behind here. I have been asking the boys what they remember about their Mimi, and its getting harder and harder for them to think of actual things about her. They remember her house, or the things she got them. And I knew, being just 4 when she passed, that there wouldn't be much memories as they grew. It breaks my heart. It breaks my heart that Fiona won't remember her at all, and that my future nieces and nephews, if my sister has kids, will never know her. My mom suffered a lot and didn't find joy in much. But her daughters, her grand kids and her nieces and nephews were her sunshine. We were the thing that brought out a true genuine smile of joy from her.

 I watched depression do some horrible things to my mother. I endured much emotional abuse from her as she tried to handle her problems her self. No matter what I did, it was never enough. It was heart-wrenching to be pushed away so often, and then to be told that I wasn't there for her. Depression blinds people from seeing love. The last few weeks I had with her, as her mind began slipping away, there were precious brief moments of clarity where that veil of depression lifted and she saw how much she was loved. Everything she had blamed me for, blamed my father for, she saw the true culprit. It was wrecking to see in her eyes the sadness that it was too late now. But a gift to finally know she knows that I loved her. In the end, that's all we wanted. For her to know we love her.

When I woke, at 4:45am this morning, I checked Instagram as I normally do because I am a social media addict. There was the announcement that a friend has gone into labor! I couldn't think of better news to wake up to. There is a much bigger plan to this world then my spec of a life and as I mourn a loss, I am eager to welcome a new life.  Actually many new lives coming just in our circle this year. This is a year of change. Moves, weddings, babies, and deaths. Life is happening. And I am excited to see what God has in store for our family and friends. He has taught me that His Will is good and trust worthy. Even in sorrow, His Will brings comfort. There is nothing I cannot face, nothing too wrecking, that leaning into Him can't get me through. And not just through, but with joy.

They say the first year is the hardest. The first Christmas without her, the first birthday without her, the first mothers day without her. Many tears were shed this year. But I am so thankful for the community God has surrounded me with, near and far, that continues to bless my life and honor my mothers memory with me. This Memorial Day is for you, Mom.

Judith Ann Tryon
8.25.1962 - 5.26.2013




Tuesday, May 6, 2014

Mom...

This will be the first mothers day without Mom.

Last year, around this time, I was walking into The Family Christian book store in search of a book, and saw a mug sitting on a table specially put together for Mother's Day gifts. It was a simple soft pink coffee mug that simply said Mom with the reference Philippians 1:7 below it. Along the inner rim the maker of the mug took a piece of that scripture out of context to write ... for you have a special place in my heart. Its actually a very odd verse to put on a mug for a mother if you read the whole verse in context, but the phrase stolen from it grabbed me. Because it was exactly what I wanted my mom to know.

Prior to the phone call that my mom was in the hospital, I hadn't talked to her in over a month. Her drinking had gotten so bad and she was associating her self with people we did not want in ours or our children's lives, so at the request of my husband, I put up boundaries. She couldn't be a part of our lives until she sought help. Those few months of trying to get her help and then shutting her out of my life were emotionally wrecking. It was by far one of the hardest things I ever had to do. I wanted to save her. I wanted to force her into help. I wanted to overlook it all and just deal with it later. I wanted her in my life.

And then I got the call that she was in the hospital. She was yellow, like pee. Her eyes were sunken in and yellow too. There were plans and options but I knew. I just knew she wasn't going to get better. I blamed her. And then myself. If only I had held her hand and made her seek help. She was coherent for a few days and so I barely left her side. When she was awake, I had her tell me about her childhood, and her relationship with my dad. Anything to know her better. My whole life she had been a secret. Mad at everyone for not understanding her but never truly opening up to anyone. Abuse had left her with no self esteem or self worth. But a deep desire to have both.

She was in so much pain. Her nervous system sent sensations all over her body that felt like pins sticking her and she lost her appitite. All she could get down was tea but she hated drinking it out of the disposable plastic hospital cups, which is why I knew that mug was the perfect Mothers Day gift for her. She was too afraid she was going to drop it and break it because she was so weak so she refused to use it. It sat next to her bedside beside the plastic hospital mug that she still complained about. That's when she had hope that she would be able to use it someday.

I learned more about my mom in those few days then my entire life with her. I watched her fade away as the poisons her liver could not longer cleanse from her body seeped into her brain. We couldn't talk any more because nothing she said was making sense. She was denied to be put on the liver transplant list because of her drinking history. A few of my cousins stepped up and offered to donated to her, but the odds didn't make sense for them to risk it. There were no more plans, no more options.

I prayed every minute of every hour we were at hospice with her that God would take her. I just wanted her to be at peace. 5 days later, she finally was.

My sister and I were both holding her hands as she took her last breath. I will never never ever forget that second in time. She was gone and I could feel it. Her body was just this shell of her laying there. And through the tears and the pain, there was overwhelming peace. She was finally free. From the pain, from her demons, from her addictions. For the first time ever, my mom was experiencing true joy. And its that belief that has kept me going all year.

Every once and a while, I allow my self to relive this experience in my thoughts and I mourn what I have lost. Even more so as of lately with us nearing Mothers Day, the year mark of her passing and us moving out of state, away from the last memories I have of my mom. The emotions are overwhelming but yet good to feel. Its like I am communicating with her somehow through the tears.

I kept that mug that I gave her. I think of how she so lovingly refused to use it, cherishing it as a precious gift. It was a $10 mug. But to her it was me being in her life again. I wish it could have been longer then 2 weeks. I love you mom. I cannot wait to hug you again someday.

Monday, January 7, 2013

2nd Heart-iversary

I've been a bit sentimental today. Stopping to recall this day 2 years ago, the staleness of the hospital, the warmth of her small body in my arms, the nerves I so desperately tried to control, forcing thoughts of the worse case scenario far from my mind. I knew I would not be able to hand her over if I let them creep in. Its the memory of shaking the surgeons large hand who assured us the surgery was a success that is the sharpest, though. The moment our fears and anxieties were finally laid to rest.


Walking into her hospital room for the first time to see all 9lbs of her drugged, stiff and covered in wires. The 4inch incision puffy and the obvious cracked sternum bulged oddly behind it. And although it resembled something from a horror movie, there was no more fear. She was healed. Her heart beat perfectly and steadily for the first time behind the horrific scar. And the sound of the sweet heart pumping through the tiny blue stethoscope is a sound that takes very little reminiscing to recall.


Gratefulness is were I landed today. For the list is never ending. The obvious, that Fiona is here. That the surgery was successful, that her heart didn't fail on her and nor open heart surgery kill her. Thankful for no complications or infections, for a short recovery and a short hospital stay. And amongst the list of things my heart is gracious for is indeed that we ever had to walk this path to begin with. Down syndrome, clubbed feet, heart defect... I watch the beauty come from the bad. The community and friendships that have formed, the strength and trust that has blossomed, and priceless peace of contentment and gratitude that has engulfed our hearts.



 Fiona was named very carefully. Her first name for its beauty, the second for its wisdom. Hope. It is what has carried us through every step, and continues to bring comfort with whatever lies ahead.



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