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, 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


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.

Sunday, April 20, 2014


I think the biggest reason I am excited to move back up north is for days like today. For the last ten years, so few holidays have been spent with family. And though we have tried... to make traditions, to enjoy where we live, to find community with just does not feel like a holiday when you are not getting together with family, for me at least. Its comforting to me to know today we are spending our last lazy Easter, and that this time next year we will be surrounded by loved ones sharing a meal that actually was worth cooking because it was for more then 5 people, 3 of which eat like birds.

I have had a heavy heart this week, listening to conversations go on around me. People either being completely negative about having to attend the one church service that they will attend this year and making stabs at the foundation of what we are supposed to be celebrating, or people completely wrapped up with the consumerism of this holiday- egg hunt after egg hunt, lengthy conversations about the outfits they have purchased for the family photo op, debates over what to get for the Easter baskets. I barely heard Jesus at all. Maybe a "He has risen" shout out, at best. 

Its death and its supernatural and its weird and not easy to talk about. Especially with your children, in which leaning more heavily on cute bunnies and candy comes much more naturally and easily. And who doesn't love a nice new outfit (I sure do) and looking good and getting complimented on how adorable your children are? Also far more natural to enjoy then remembering a horrible, violent part of history and attempting to seeing beauty in it all. Someone died for me. He paid my penalty and set me free and I just kind of give Him a nod thanks, and keep living my life.

I feel like the problem is we don't truly believe we need to be saved. We don't think we are that bad. We weight good and bad on our own moral scales and for most of us, to the common eye, our scales would look heavily tipped towards good. So its hard for us to grasp ourselves through Gods eye, who has a much higher standard for us then we do for ourselves. An impossible standard that makes us feel like God is unreasonable so we ignore His presence and convictions because its too much. We fool ourselves into thinking God is bad or just non existent, after all, look at all the horrible terrible He allows to happen in the world He created and then He makes it impossible for us to meet His ridiculous standards?

From beginning to end, the Bible is a love story. And the resurrection is the climax of the whole thing. Yes, it is impossible for us to live to the perfect standards of a perfect God. But He loved us too much to let us just fail, He loved us too much to just cruelly watch us fail. Instead, He extended grace, He took the punishment for all so that the path to Him would once again be available for us. He does not ask for us to be perfect, just to rest in the One who is. And to trust that He has both the small and big picture in control.

// Jesus said to her, " I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this? //  John 11:25, 26

Isaiah 46:4. Isaiah is one of my favorite books in the Bible

Wednesday, April 16, 2014



 Its been awhile. Like a-couple-of-years awhile.

 Blogging is an interesting thing. Its an outlet for the soul. A place to become vulnerable and open, and while they come with their risks, there is something about the reward of releasing your heart. And I've missed it. 

Life has steadily kept going. Fiona is now almost 4. The boys almost 6. I lost my mom a year ago May 26th, that still stings to say just as bad as the first time I shared the news. We have decided to leave our little paradise in SWFL and move back to my hometown area in Michigan. The idea that this time next year I too will be stuck in snow still sends shivers down my spine, but the thought of Northern life again- family, seasons, Fall...oh sweet Fall, has me anxiously anticipating the move. Life steadily keeps going. Constant change, constant growth.

 We have our computer set to scroll through the endless pictures I have saved on it when it goes into hibernation mode. Often, I lay on our bed and just watch the past scroll by. Tonight as I watched life in still frame fade from photo to photo, in random order that the computer chose, I saw pictures of the boys when they were 2-3 years of age. I ashamedly admit I barely remember them at that age- my thoughts and attention were consumed then with the birth of my daughter and her pending state of health, her future and then the medical care that dominated her first year of life. I am sure if you go back through this blog, which was started around that time, you would witness how my life revolved around her. The love mixed with fear mixed with hope mixed with anxiousness. Thankfully my camera captured what my eyes did not. Still frame shots of the year and a half my sweet firstborns went out of my focus.

 Sometime before they turned 4 they come back into my memory. I remember the snap back into focus and the shock that I had let that much time pass without giving them my attention. Not that I neglected them, of course I took care of them and spent time with them, I have photos that prove I did. But I did not give them my minds attention. These photos that scroll across my screen remind me of how they were amazing little men at that age... which led me to think how Fiona would be right now if that extra 21st chromosome wasn't there. At 3 she is still far behind where her brothers were at 2. What would my daughter be like if she didn't have Down syndrome? 

Questioning things is a good thing. After all there are no stupid questions. Fiona is a-maz-ing. She makes my day every day. I love her exactly as she is and in so many, many ways am grateful for her differences and feel blessed to experience life through this lens. But I still wonder, what would she be like if she started walking at 1? What would she be like if she could talk in full sentences at 3 like the other little girls I know? What would she be like if she understood things faster and if she could keep up with everyone around her? I try to imagine those big blue eyes slightly less almond shaped, her body a little more proportional, and words flowing effortlessly with a slight childish lisp like her brothers. 4 years ago asking these questions and thinking like this would break my heart. But today, they are simply curiosity. I truly cannot imagine Fiona like this. I try and try and all that comes close is flash views of other friend's typical developing little girls, but not my Fiona. No, I can only view her as Fiona. Exactly as she is. Imperfectly perfect.

 Truth be told, I do the same thing with my boys. Obviously not wondering what they would be like without Down syndrome because they don't have Down syndrome. But wondering what they would be like if... they weren't twins, they weren't both boys, they weren't so short, they weren't _____. But I can only view them as Gavin and Breiden. Exactly as they are. Imperfectly perfect. This is the beauty of life.

With Easter this weekend, and having American children in American public schools who are being bombarded with eggs and bunnies and lilies in nearly every direction, I have been taking extra time this week to talk to them about beautiful life. The beautiful life that laid Him self down because He valued ours. That took on all our imperfections and faults and wrongs at a great cost and made us whole again. He says come to me as you are, you are lovely. Its overwhelming to know He is Father and loves me, His child, with the same heart-aching, endless, all consuming love that I love my children. That my imperfectness does not alter His love for me. But rather every struggle only leads me deeper in relationship with Him. Life keeps steadily going on. Constant change, constant growth. With each day given, is a day to know Him more. And ask questions, because there is no stupid question. And there is no question that He cannot handle.
Related Posts Plugin for WordPress, Blogger...