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.

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.

Saturday, December 15, 2012


I've stopped blogging as much. Some due to time, some do to lack of motivation, a lot to do with the fact that I wanted my thoughts to be little more private. And although none of those reasons have changed in anyway, I knew this would be the only way to relieve some of the weight that is on my heart right now.

My heart aches. Babies. Moms. Futures. Dreams. All gone. I've read each name. And the ache grows bigger. Sweet faces are now starting to pop up and the whole opens wider. 26 lives gone. Hundreds of lives altered forever. The repercussions fully unknown. How many brothers, sisters, friends, mothers, fathers, first responders, now will suffer nightmares, trauma, mental illness, self abuse, self neglect, bad decisions... all because of this act. My head spins and my stomach turns at the thought of all the pain.

Tragedy and the unfairness of life is nothing new. Awareness of it is the blessing/curse of being brought into the special needs world. My facebook feeds, intagram roll, and emails are filled with pictures and updates of children with cancer, children who are abandoned and mistreated, parents tragically killed, people dying unfairly and the ugly aftermath of certain unfortunate circumstances. I would say, most in our American bubble do not face pain like this daily. Most only hear about the "major" tragedies such as Newton, CT or a personal tragedy and turn a deaf ear and a blind eye to everything else in between. The harsh reality is horrible, terrible, life changing tragedies happen almost every minute. Child trafficking, abuse, neglect, murder, disease, accidents, war... I am brought to tears daily from what I know. But this tragedy is shaking me to my core.

My husband has told me not to read things in the past because of how knowledge of the bad can consume me. And to some extent I understand and wish I could look away. But there is power behind awareness. It forever changes how I go about my day to day. The less I am reminded of the horrible in the world, the more likely I am to live my life as if it revolved around me. The past two days my patience has been remarkably stronger, simply out of gratitude that I can still hold my babies. I have nothing to complain about.

I am sensitive to the fact that in times like these people can be mad at God. Why, oh why would He let this happen? And I wish I could better describe the overwhelming feeling of Gods presence that I feel in a time like this. I have my theories behind possible whys, but there really is no way of really answering it.  I trust He is here, that He is with those families waiting to be the one to catch them as they are falling, and that each prayer is reaching his ears- the whys, the pleads for comfort and relief, and cries for justice. And oh, how grateful I am the He is there to lean on. He is my comforter, my strength and my hope.

I have been holding my family tighter. Praying every chance I get. Once again so reminded not to take anything for granted. Asking for courage to not fear and pleading that my babies will never have to know pain like the families we are mourning for. The pain that is so crippling it is effecting millions of people who do not even know them.

I hope that things change. That media learns some sensitivity and stops interviewing children who are dealing with trauma. That they stop glorifying the criminal by the simplicity of putting the name down in history and start glorifying the victims, who's story's should be forever shouted from the roof tops. Victoria Soto is a name to remember. Rachel Davino should be remembered. Dawn Hochsprung, Nanzy Lanza, Anne Marie Murphy, Lauren Rousseau, Mary Sherlach. All heros. James Mattioli, Jack Pinto, Noah Pozner, Benjamin Wheeler, Chase Kowalski, Daniel Brown, Dylan Hockley, Jesse Lewis- tiny princes who should never be forgotten. Charlotte Bacon, Grace McDonnell, Caroline Previdi, Jessica Rekos, Allison Wyatt, Avielle Richman, Emilie Parker, Olivia Engle, Madeleine Hsu, Catherine Hubbard, Josephine Gay, Ana Marquez-Greene. Sweet princesses that are forever in my heart.

My we never forgot. May we be more aware. And every moment be grateful of the moment we have.

The Lord is close to the brokenhearted, and saves those who are crushed in spirit- Pslam 34:18
A few faces to remember

Catherine Hubbard age 6.  Her family asks for prayers...."We are greatly saddened by the loss of our beautiful daughter, Catherine Violet, and our thoughts and prayers are with the other families who have been affected by this tragedy," the family said in a statement. "We ask that you continue to pray for us and the other families who have experienced loss in this tragedy."



Sat night Robbie Parker remembered his 6-year-old, Emilie as a bright creative girl who acted as a mentor to her 3 & 4 yr old sisters. "Emily's laughter was infectious and all those who met her would agree this world is a better place because she has been in it," She was the type of person that could just light up a room. She always had something kind to say "She is an incredible person and I'm so blessed to be her dad. FB page set up for Emilie:


Noah Pozner, 6  The Pozner family got word late Friday afternoon that Noah, their 6-year-old son, was among the dead at Sandy Hook Elementary School, said Reuben Vabner, the father of Noah's elder siblings. Noah was bright and precocious. A memorial service was held Saturday as part of their synagogue's Shabbat service.

Friday, November 23, 2012

I feel for you, Rudolf

I don't know why its that hard to just wait till the day after Thanksgiving. Its one of my biggest pet peeves and it literally puts me in a bad mood when people start decorating and playing Christmas music before Thanksgiving gets it due. Now, people, you can let the festivities begin.

We talked about Christmas all day. Pulling out decorations, bringing the Christmas movies and books out from the back of the cabinet all nicely lined up right up front for easy access. And tonight, me and the kids curled up after dinner and enjoyed the first movie of the season. Rudolf.

Photo: My little holiday behavior helper is back . Thanks @mariaglassford for reminding me
Our Elf on the Shelf made his first appearance back this year. 

Fiona sat leaned back, laying her sweet smelling soft blond hair on my chest as she twirled it as she does when she is a bit sleepy. This movie hit me in a completely different way the first Christmas after she was born. One of those moments where I thought a little too deeply about this whole new special needs/different path we are on. I cried quiet tears through the whole movie that first Christmas, as Rudolf got made fun of, out-casted, and belittled by both peers and parents all for being created different. My heart broke as jolly Santa exclaimed to Rudolf's dad "You should be ashamed", referencing being ashamed he created a son that was different and odd. As parents forbid their children to play with him and as the kids laughed. I had never thought so deeply about this children's story before. And the same thoughts flooded my head this year as I sat watching a movie I have seen well over a hundred times, never once prior to having Fiona grasping how hard it can be to be different. 

Its silly, I know, getting so choked up over a kids movie. Us parents of kids with special needs are known to be overly sensitive and all.... well, when your reality is that our child will most definitely face cruelty like that at some point in their life, it hits a bit harder.

Fiona is doing so well. She is truly the tiniest thing walking on two feet. And a good thing because her bum needs to be close to the floor as she loses her balance often. She is a full blown two year old toddler now, atittude and selfishness included. I hear mine more then any other word every day, but yet have to have heard the sweet sound of mama come from her lips. She is a strong-willed little one.

I don't necessarily fear what my daughter may face in our harsh, self centered world. But it undeniably does sadden me to think about it. Every bullying story, every lose joke, every mean teenaged girl who thinks she is all that and looks down on anyone less then par, stings my heart in a close to home way. And I know that people with Down syndrome are just one portion of the many people who deal with that kind of cruelty, and that many with no special need still will be out-casted and belittled by those that put a label on perfection. Its just strangely painful to know in advance how people will treat your child (whose every created difference is merely a part of who they are to you, part of their wonderfulness) by the many cruel things that are said and done to people with an extra copy of the 21st chromosome. Its not an if, its a when. My prayer is that its just far and few between and that there is always a Carson around to stick up for her. Of course, she always has her brothers looking out for her :)

photography by Ashley Allbee
Now scroll back up and click on Carson and read about him and his friends. Heroes.

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