One Week Ago

One week ago, to the hour, our family took over the waiting room, set up camp and eagerly  awaited Colin’s arrival.  I can’t even believe it all happened.  It all went so fast, but like I was moving in slow motion, almost like a dream.  Yet here we are at home, healing, grieving, smiling, laughing, crying, and writing.  From here on out, not a day will go by that we will not think of our son.

So much happened from putting the car in park at 8pm Monday night, to putting the car in drive at 4pm Wednesday evening.  We will never forget those 44 hours with Colin.

I have never been more exhausted yet energized in my life.  I have never been more sad yet happy in my life.  I have never cried so much yet smiled so much in my life.  I have never felt so empty yet felt so full in my life.  I have never felt so much purpose in my life as when I watched Jo hold our son for the first time.  The strength and love that filled her eyes as she gazed deeply into our son’s eyes made me feel like I have never felt before.  I felt proud to be not just a father, but Colin’s father.  I felt proud to be not just a husband, but Jo’s husband.  I felt a sense of pride that I think only a father feels for his family.  It was unlike anything else I have ever experienced in my life.  I felt blessed beyond words.

There aren’t enough adjectives I can use for Colin’s obituary to describe and capture his greatness, his perfection, his purity, his strength, his beauty.  But, the one word, the one that we all know, the one that keeps coming to my mind is… LOVE.  My love for him is deep.  Jo’s love for him is deep.  Our family’s love for him is deep.  And, most importantly, God’s love for him is everlasting.

Colin has reached more people than we could have ever imagined.  He has helped us spread more awareness about Anencephaly and Folic Acid than we thought possible.  I am so proud of him and blessed to be his father.  We have been in touch with family after family who have gone through or are currently going through similar situations and we have been able to help and inspire them.  He has made me more proud than anything on this earth.

I will end with a quote I posted today that really hit home with me…

“I have found that if you love life, life will love you back.”
– Arthur Rubinstein

We have indeed loved and respected Colin’s life, and we have undoubtedly felt the love back from him, from God, from our family, and from everyone following our journey.

All my love,

Colin’s Daddy

my last wednesday with you

This week has been very hard. Since Monday I have woken up and thought what each day the next week would be like. Monday I thought, a week from today I will be on my way to the hospital. Tuesday I thought, a week from today I will say hello and most likely goodbye to my son. Now that leads me to today. If everything happens the way the Dr. says Colin will have passed away already. So today I woke up and thought, today is my last Wednesday with Colin. It made me so sad to think that it would be the LAST Wednesday Colin would be growing inside me. By this time next week I will have an empty belly. I pray so hard every single day that Colin lives through the birth. I pray that we get time with him alive. What I ultimately pray for is that he is able to live a long life. If everything happens as statistics show none of these things will happen. So, today I tried very hard to be thankful for this last Wednesday with Colin. I am feeling very pregnant now a days, but consciously try not to complain. Today I am grateful to be pregnant, today I am thankful to have Colin alive inside of me. I want to fully appreciate these last few days I have with him. Now, don’t get me wrong, I believe in miracles. I believe Colin is capable of living a longer life than we expect. I believe God answers prayers and heals. I also don’t want to be naive and disregard all the information we have been given. I am as prepared as I can be to meet my son. I am also prepared (if anyone can really be prepared) to say goodbye. The love I have for Colin is beyond explanation. I’m sure any parent understands that. I will be forever thankful for him and how he changed me. Today I have my son! Today he is alive! Today Brian and I went shopping for an outfit to bury our son in. Today was HARD, but at least we had today with him and we tried to make the best out of today. I told Colin over and over again how much I love him. I told him how proud I am of him and how he is changing people. I told him how much I appreciate him and his love. No one knows if this was their last Wednesday with someone they love. Did you live today like it could be your last Wednesday? Did you appreciate the fact that you woke up and took a breath this Wednesday? Do the people you love know you love them today?

Did you appreciate this Wednesday? I know I tried my best to be positive today and live today as well as I could. I hope I can always remember to be so thankful for each day I am alive and for each day my loved ones are alive. Colin has taught me to be thankful. I am thankful for everyone who continues to support us and love us. We would not be where we are if it wasn’t for our loved ones whether it be family, friends or complete strangers.

I hope everyone had a great Wednesday!


Colin’s Mommy


In One Week I will Hold You

In one week I get to hold my son.  Sounds weird, but good, but sad to say that out loud.  Don’t get me wrong, I am beyond stoked to have Colin, to hold him, to kiss him, to breathe him in, bath him, and just be his dad.  But, I am also deeply saddened about this whole situation.  This kind of sad is a sad I have never had to endure for this length of time and it weighs heavy on me.

There is nothing on this earth that can capture the way I feel about my son right now.  He has done more in the womb than I have done in 30 years on this earth.  He will have done more in his short time here on earth than I will in my lifetime.  As a father you always want the best for your child I feel.  My dad said that to me, and I am sure all of you dads out there feel the same.  We want our child to have a better life than ours, to be stronger than we are, to be braver than we are, to be smarter than we are, more daring than we are.  My little guy did it already.  I am so proud of him.

These last couple of weeks, especially October, have been full of mixed feelings for me.  I can’t help but to reminisce a bit about how we got here.  It always makes me happy/sad.  I am such a sucker for reminiscing and it usually makes me feel like time passes so quickly. So quick that you barely even know what is going on around you.  Almost like you have to remind yourself of what happened because you can’t believe how quickly time got away from you.  It feels like yesterday was February 29th, 2012 when we found out about Colin, then I blinked and here we are.

Time has been a strange thing to me.  On one hand I literally cannot wait to meet Colin, yet on the other I wish we had all the time in the world to have him with us while his heart is still beating, and while I can still feel him kick and move.

Jo and I have been receiving some extremely kind emails during these last few weeks from people all across the nation, and world for that matter.  They keep referencing what “extraordinary” parents we are.  I tell you what, I don’t feel extraordinary.  I feel lost, I feel scared, I feel happy, I feel sad.  Pretty much everything but extraordinary.  I think the only ones who are extraordinary in this whole ordeal are Colin and God.  They know what’s up.

I want to share a feeling that I hope no one has to ever feel and why I don’t feel extraordinary.  Jo and I had an appointment with a funeral home and the cemetery this week.  I have never felt so strange.  Here we are at the funeral home and cemetery picking out where we will bury our son, choosing a casket, and not two feet away from me his is kicking and moving.  Colin was full of life.  Shoot, he had more life and spunk in him than than everyone in the room.  It was a kick in the gut reality check for me.  Colin is not scared at all.  Remember I told you that he was braver than me, that is where this comes into play.  It was his way to tell me, “It’s alright dad.”  I love him for that.

I think I will only feel extraordinary when I get to hold him, and I cannot wait for that moment.  I recently spoke to another dad whose baby died of Anencephaly. He told me that he and his wife put their faith in God and prayed that He would not give them anything they could not handle.  He shared that he felt he would not be able to handle letting their son die in their arms.  Well, their prayers were answered and their son was stillborn.  He shared how it was peaceful and perfect for them.  I feel just the opposite for us and I hope my prayers are answered too.  I hope that God brings me my son with life and that I get to hold him and feel him breathe.  Colin is so active now and has been the entire pregnancy that it would break my heart to see him lifeless.  It would be uncharacteristic of him to not move.  I want to experience him and hold him.  I want to feel his energy for just a second.

In one week I get to hold my son.  As I write this it should be nearly to the hour that we will have him.  I cannot wait to meet him and long for that moment when I finally do.

With love,

Colin’s Daddy



Mommy’s First Blog

Bliss, Devastation, Anticipation

Brian has been asking me when I would finally blog. I write in my journal all the time but in my journal I write to Colin, so my thoughts and words stay between him, God, and me. Blogging would bring others into my thoughts and feelings and blow my private world wide open, and that made me scared. But then I got to thinking that by keeping my voice silent and my feelings closed, a mother just like me could be out there desperately searching for comfort and information. My words just might make a mother who is or has gone through something like this feel a little more sane because they can validate that their feelings are just like some one else. To them: I want you to know you aren’t alone and I hope my story helps in their preparation or healing.

I decided to blog my first journal entry which is the day we found out we were pregnant (bliss). Then go to my journal entry from when we found Colin had anencephaly (devastation), then skip to my most recent journal entry (anticipation). My hope is to give you some insight on how drastic my feelings change, but the one feeling that stays the same is my love for my child.

BLISS- 2/29/2012 (4 weeks pregnant)

Dear Baby, Today I found out you are growing inside me! Your Dad and I were so excited when the pregnancy test came out positive! I woke up around 7:30am this morning (Leap Day) and decided to take a test because our dog Annie was acting very strange towards me last night and she acted similarly toward Lady when she was pregnant with your cousin Shawn (aka Pickles or Edelweiss). It has been an exciting day to say the least. I told your Grandma Susan, Uncle Shawn, Lady, Cousin Andrew Boy, Edelweiss, Aunt Brenda, and Ryan and Sarah Satterfield today that your dad and I will be parents! Everyone we told was beyond happy to hear the news and can’t wait to meet you. This is very exciting but also makes Dad and Mom nervous because we want everything to be perfect for you. We already love you so much and are excited to make our first Dr.’s appointment and tell your Grandma Kathy (VaVa) and you Grandpa Doug (Poppo) and your uncle Scotty tomorrow that we are expecting you! I am feeling a little sad that I am not able to tell your Grandpa John (my Dad) about you because he is in heaven, but I know he already knows and is just as excited as everyone else. I love you so!   Mom

Devastation- 4/20/2012 (The day after we received Colin’s anencephaly diagnosis. 11 weeks pregnant)

My dearest, dearest baby. It is extremely hard for me to write today. My heart is broken into millions of pieces (so is your Dad’s). We found out very bad news yesterday. We found out you have a condition called Anencephaly. Once you are born you will not live very long. Oh my sweet baby I can’t believe I have to write about this. We love you so so so much! It is killing me to think about this! It kills me that this is happening! I am unbelievably sad! We went to get an ultra sound yesterday and they saw it. You are missing part of your brain and skull. It will cause you to pass away shortly after I deliver you. They told us we could end the pregnancy now but your Dad and I will not. We love you and will take care of you for as long as we can. I’m so sorry baby. I’m so, so sorry. They told us there wasn’t anything we could have done to cause this, but I feel very guilty. I feel like I failed you. We told our immediate family last night. Everyone is so sad. I feel like I am making everyone’s life so sad. Everyone is worried, they don’t know what to do or say? I don’t know what to do or say? I saw your Dad cry for the first time since I’ve know him. Your Daddy is so sad and scared. I’m sorry baby. I love you more than ever. I will carry you until God decides to take you. Until then I will take care of you as best I can. I will be strong and brave and trust that God will take care of you. I’m so sorry. I love you more than I could every imagine loving someone.  Mom

Anticipation- 9/25/2012

Dear Colin, yesterday we had a Dr. appointment. You crack me up dude because you have yet to show us your whole head! We have pictures of your eyes, your nose (which is Daddy’s nose for sure!) and cute mouth (that looks like you are giving kisses all the time), but not anything above your eyes! Everyone who has taken the ultrasound says you are just really low and cozy. I think you are purposely not showing your head because you are so much more than your diagnosis. I think you are telling Mommy not to focus on your head, but to focus on what’s most important, our love, and the time God has given us. No ultrasound machine can show us how much love we share and we have to be very thankful the amount of time we have had together. We don’t know how much more time we have, but non of it should be wasted on what your head might look like. I know you are exactly how you’re supposed to be. I know you are beyond beautiful because you are a miracle. Your life has already touched so many. You’re only 35 weeks old and have touched more lives than Mommy and I’m 30! I love you so much Colin. Thank you for showing me what is important.  We also talked to a woman from Duke University which is going to help us become part of a research group for neural tube defects and a man from One Legacy to donate organs etc. It is hard to believe that your Dad and I have to go through this. We would have never in a million years thought we would have to meet with a panel of people to talk about what organs we want to donate from our son. Our precious baby Colin. But, this is the hand we have been dealt. We don’t know exactly what God has in store for you but if he does decide to take you faster than we want we have to find a way to turn this crappy situation into something positive, something beyond ourselves. What better way to honor you? Daddy and Mommy are giving you a chance at life and now you will give others a chance at life! What an awesome dude you are! I am so proud to call you my son! I am so lucky to have been given the opportunity to carry you! We are now anticipating your arrival. Four short weeks and we will finally hold you in our arms and love you more than anyone has been loved before. I am so grateful for you Colin. I love you so!  Mom




Celebrating Colin Patrick Perry

Yesterday we celebrated Colin with friends and family.  Yesterday was so perfect for him and I am so excited to meet him soon.

Colin’s celebration party was something that has been weighing heavily on my heart.  I was angry and mad to think that this shouldn’t be happening.  We should have had his baby shower party with fun games, not throwing him a party so that everyone can meet him before God takes him.  But, with the strength and encouragement from our birth coordinator Amanda, turned dear friend, turned Colin’s Godmother… we asked her to be his Godmother at the party, it was a special moment for all of us… with her strength we were able to wipe away the tears and start planning a party for everyone to meet him.  We embraced the thought of the party and I couldn’t imagine it any other way.

Things could not have turned out better.  I am writing this the night after the party and in retrospect, I am so happy we did it.  My wife, who is the strongest most beautiful person I know, did a great job creating all of the crafts, picture montages, stations, and decor with her closest friends.  The planning process was also a great way for us to surround our family with positivity and good vibes.  Plus it gave me a perfect kick in the butt to work on the yard and get things ready in the yard for my baby boy.

At the part we had a sign in table displaying items that people had made for Colin.  We had Seinfeld playing in the living room, which is Colin’s favorite show!  He moves and shakes every time he hears Jerry’s voice.  It is truly hilarious.  I would think that it was just Colin’s 10 o’clock routine to move and shake, but I will share a funny story that I shared with everyone last night.  It was during the Olympics and the track and field trials were happening.  It was about 10:10pm and Jo tells me, “Colin is not moving, he must be mad we are not watching Seinfeld.”  I thought it was just coincidental that he moved at 10pm, so I brushed it off.  A few minutes later, nothing.  So I turned it to TBS and we started to watch Seinfeld like we normally do at night… and within 5 seconds of hearing Jerry’s voice Colin starts to go nuts and move like a wild man!  It was the cutest thing.  I will never forget that.

So, like I said we had Seinfeld on loop in the living room, we had bagel bites, fruit kabobs, pancakes, mini corn dogs, and nachos out for everyone to snack on… all things that Jo ate during the pregnancy that Colin really enjoyed.  We also had a timeline of events with pictures and text showing everything from the day we found out up until the party.  His 3d/4d pics were out so everyone could see his “Perry” nose.  So cute.  Not mine, his.

Father Pat, the priest from our parish and the father who will baptize Colin, made it to the party and gave a very warm and touching blessing.  It was perfect.  Then I grabbed the mic and thanked everyone for coming, thanked all of the friends and family who have helped us along the way, helped make this party happen, and help whip our yard into shape (we just bought our house in October, so things have been a work in progress and everything was looking good for Colin and for the party.  I was a proud dad).  Then Jo took the mic and thanked everyone I forgot to thank, she is awesome.

And that was that.  Short and sweet.  All in all it was about a two hour gathering of friends, family, love, and support.  I am so glad we had the party and all of the pics to look back on and smile, which I will share soon.

With Love,

Colin’s Daddy


Daddys First Blog

I have been wanting to blog and write badly, but felt lost as where to begin… I didn’t know if I should provide a back story about how we got to where we are now, or if I should just jump right into it as if I have been blogging all the while.  My gut, and Colin, told me to just write, so that’s what I am going to do.

I have never been so proud of my family and proud to be a father than I am right now.  I have a strong feeling that will change once Colin is born, but for now, it’s now.

About a week or so ago we got an email from Kate DeSantis. She explained that she started a blog spotlighting people who make an impact on children’s lives.  She said she wanted to interview us, and we agreed.  As Joanna and I were huddled over the phone in our kitchen on speaker phone, which was reverberating through the whole house, it became clear to me just how special Colin is.  Don’t get me wrong, it is my fatherly duty to think my kid is the cutest, the best, and the most important at any given moment… but that realization of being interviewed by a lady across the country whom we have never even met before, and who thought we were great parents, really put things into perspective for me.  Back to that whole thing about never being more proud to be a father, this is where that feeling comes in.  I just took it all in.  Jo and I were holding each other, fighting tears, and exchanging laughs as we answered Kate’s questions from how we came to be, to our story with Colin.  It was trip down memory lane and made me appreciate Jo that much more, thanks Kate!

After our interview I wanted to write and blog so bad, as it seemed fitting.  But I just couldn’t do it.  I felt I wouldn’t be able to articulate my feelings in the way I wanted them to be conveyed.  Then something special happened.  We had our nephew Andrew over last night and he read “The Giving Tree” by Shel Silverstein (Jo’s favorite book), to Colin last night before we went to bed.  Amidst the pronunciation errors, and word stumbles, Colin kicked and moved.  He didn’t care about the errors, he only responded to the love.  So thank you Colin for kicking me in the butt to write today, and for inspiring me to write hereafter.

I am shouting from the rooftops that, “I LOVE MY BABY BOY!” I thought I had things all figured out and planned perfectly.  I am a planner, so I like to think that all my plans about graduating college, getting married, and buying a house were set in place for a reason.  Then here comes Colin and adds to that ideal plan.  Although anencephaly forced its way into our lives and threw a monkey wrench into those plans, I feel that it is what was supposed to happen to us at this time.  What that exact reason is, I’m not sure and don’t know if I’ll ever know, but it happened.

Colin has changed me for the better, no doubt.  The fact that we are getting emails from across the country and world tells me that I have a son doing pretty awesome things.  I don’t know if I mentioned it yet, but I could not be more proud to be his father and more proud of my family than I am right now.  Expect more entrees from me and stories, thanks to my baby boy.

Although I am deeply saddened about the near certainty of not holding Colin for more than a few hours, I am certain of many things that give me comfort… I love my wife, I love my baby boy, I love my family and friends, and I will share our story to inspire others to choose their baby and educate about anencephaly and folic acid.

With Love,

Colin’s Daddy



What you should know about Folic Acid…

Folic Acid is extremely important in the prevention of Anencephaly. In fact, taking the accurate amount of Folic Acid before you become pregnant reduces the chances of your baby being born with Anencephaly by 70%! The recommended daily dosage for ALL women of childbearing age is 400 micrograms (0.4 milligrams). This is the amount in most over the counter multi-vitamins. For women at risk of having a child with a neural tube defect (if she had a previous child with an NTD) the recommended daily dosage is 4-5 milligrams (it has to be prescribed by your physician) and taken at least 2-3 months before conception until the 3rd month of pregnancy.

Folic Acid, also known as Folate is a B-Vitamin that can be found in some enriched foods and vitamin pills. Folate is the naturally occurring form of the B-Vitamin; “Folic Acid” is the synthetic form of the B-Vitamin that you get in vitamin pills and fortified foods. The body more readily absorbs Folic Acid from vitamin supplements and fortified foods than Folate from food. The body absorbs about 50% of Folate, while approximately 85% of Folic Acid in fortified foods and 100% of the Folic Acid in a vitamin supplement are absorbed.

What is Anencephaly?

Anencephaly is a neural tube defect that occurs when the cephalic (head) end of the neural tube fails to close. This usually happens between the 23rd and 26th days of pregnancy, and results in the absence of a major portion of the brain, skull and scalp. It occurs in approximately 1 out of every 1,000 pregnancies.  Babies born with this disorder are born without a forebrain, which consists mainly of the cerebrum. This part of the brain is responsible for thinking and coordination. Below are statistics for a baby’s life up to and after birth:

  • 7% die in utero
  • 18% die during birth
  • 26% lived between 1 and 60 minutes
  • 27% lived between 1 and 5 days
  • 5% lived 6 or more days

The termination rate of babies diagnosed with anencephaly is up to 90%. Brian and I know the pressure parents get from the medical field to terminate. We know the helplessness and hopelessness that coincide with this diagnosis. But, we want parents to know IT IS POSSIBLE, and YOUR BABY IS WORTH IT!