Wednesday, October 21, 2009

One Year

I can't believe it's been a YEAR. One year since our worlds were completely rocked and that we learned the meaning of Trisomy 18 for the first time. One year ago tonight, 10/21/08, things were perfect...halfway along in my pregnancy I was feeling my baby squirm and kick and roll around all the time. I had called all my friends and family to remind them that tomorrow, 10/22 would be my ultrasound. We would be finding out the sex of the baby and would call them right away, as soon as we had the news.

Dan had taken the day off so that we could go together, and so he could stay with Jackson when I went to my 20 week checkup at 9:30 that morning. I went to that appointment and was greeted by the big stork sign that meant the dr. wasn't in - he was delivering a baby. But since I had no concerns, no specific questions for the dr., and was just there for a routine check-up, I could see the office manager/practitioner in his place. Little did I know, this was the last time that anything about my pregnancy would be considered "routine." My appointment was quick - weight, urine, blood pressure and then my favorite part...listening to the heartbeat. As always, it sounded perfect. If Jackson was ever with me he shouted "choo-choo" when he heard it because of the loud, steady rumble that echoed from the doppler.

I was in and out of the office in about 15 minutes. Not a care in the world.

When I got home, Jackson was taking his morning nap so Dan and I spent some time doing yardwork and a final fall cleanup outside. It was a gorgeous cool day. I was chugging all my water so I could have a full bladder for the ultrasound.

The 3 of us headed out for my 12:30 appointment. We had figured Dan would play with Jackson in the waiting room while they took me back for the first part - the quick boring part where they just look things over, do some measurements, and tell you everything looks good. Then, they'd bring him in for the fun part - where they tell you the sex of the baby and point out all the perfect little parts of their body. We were armed with the ipod full of Thomas movies for Jackson to enjoy during that part. But unfortunately, the first part wasn't quick and the second part wasn't fun.

The first part took an unusually long time and the woman wouldn't tell me a single thing. The instant the first black and white image of my baby showed up on the screen, tears streamed down my face. I cried tears of joy and a had huge smile because of how sweet that baby was. I remember saying out loud, "Hi sweet baby." The tech was clumsy and awkward and silent. She kept typing, it seemed like repetitively, to mark things like "Gastro", "Foot", and "Brain" over and over again. The very first thing that I thought was a little odd was how many times I felt like she took pictures of, and labeled, "Foot".

I finally asked her if she knew the sex of the baby and she just said No. She finally let me go to the bathroom and went to get Dan and Jackson. When Dan came in he immediately knew it had taken longer than it should have, but I didn't seem to care because I just wanted to find out if Jackson had a sister or brother. I naively hadn't even given a second thought to whether or not the baby was okay. I always felt the kicks, the heart rate was perfect at every appointment, and for 20 solid weeks we hadn't worried about the baby for one minute.

I expected the second part to take the same amount of time as the first, but it would start with her telling us if we had a boy or girl, and then it would move on to pointing out the cute button nose, the strong beating heart, the spot-on measurements of a baby this age, and so forth. I expected that we would leave armed with our first set of pictures, and that I'd be dialing my phone on the way out to share the news with all my family and friends. But 5-10 minutes later, I left in tears, not wanting to call anyone. The tech was very fast, basically saying that there was no way to find out the sex of the baby. When I told her I didn't understand, she said the baby was too small and that sometimes it's just too early. I was perplexed because people always find out at 20 weeks, that was exactly how far along I was at that time, that's how far I was when I found out with Jackson, and it didn't make sense that it was too early. Her response was "that's not a 20 week old baby." I felt completely helpless. I was disappointed that we hadn't found out, I was confused about why, I was embarrassed that I was so upset, and I felt like I had been cheated out of what was supposed to be a huge celebration. The woman had no idea why I was crying, and the only thing I could say was that I was disappointed. My expectations had not been met and I was hurt by that. We walked out empty handed - no news and no pictures.

When we got home we put Jackson down for his nap and I called my mom and cried. At the time I was still disappointed that we didn't know the sex, and I was embarrassed that I had made such a big deal of it. I didn't want to call everyone to tell them we didn't know, but I knew that everyone would start calling to find out. Sure enough, only a few minutes later, the phone rang. But it wasn't my sisters or my friends. It was my doctor's office. It was the practitioner I had seen that morning, calling to say that there was something wrong. They had seen the ultrasound pictures and we should come in to talk to the dr. I asked if I should make an appointment or come right then. She said I should come right then. I told her my husband was home but our son was sleeping, so should he come with me. She said we should definitely come together. Right then, with my hands shaking as I hung up the phone, I knew it was bad. I called my mom again and I remember barely being able to talk. I wasn't bawling hysterically, I was just very very quiet.

We woke Jackson up to take him with us and when we got to the dr. office, I immediately felt like "that girl." The feeling was so distinct and I can remember all of it like it was yesterday. The minute I gave the receptionist my name they all looked at me knowingly, sympathetically. They shuffled around and scurried to get things in order. Rather than one nurse greeting me to take me back, there were two, plus the practitioner, and they held my hands and gave me tissues. The first thing I told Dan was that if they gave me tissues and treated me like that it must be bad. I gave him my planner and asked him to take notes because I knew I couldn't write. The dr. was very calm and very sweet and didn't beat around the bush. He said there were 3 things wrong - omphalacele, club feet, and choroid plexus cysts. He explained each in detail and explained how each one in isolation wouldn't be that big of a deal - each could be fixed. But the fact that they were all showing up together caused concern. They immediately thought it was a genetic or chromosomal disorder, and they immediately made it clear that it was out of their league. They already had a little note for me with the name, address, and time of an appointment that they had set up for us with a geneticist in the area.

We headed back home, put Jackson back down, and got back on the phone. This is when I think I started bawling. With each call I was greeted by someone excitedly answering to find out the sex of the baby, but in my tired sad voice I was telling them that something was terribly wrong. Dan immediately got online and even though you're not supposed to, started doing research about what little we knew. I did a couple quick searches too, just to see what might come up when you look for all 3 of these issues together. Trisomy 18 was the only common thread that we found. But Trisomy 18 was, of course, worst case scenario. I almost overlooked it, and got mad at myself for the classic case of looking online and immediately assuming the worst. I remember pacing the house talking to my sisters and best friends, crying and questioning, hanging up and calling someone else. But sweet Dan had been sitting so quietly, just waiting. All of a sudden I realized that we had hardly talked to each other. So I put the phone down and we just held each other. We cried and cried and cried. I remember all of those nights for the days and weeks to come, where I'd think we were doing so well, but then night would come. And when it got dark and when we were alone we would just cry. And I wondered if there would ever come a night when we wouldn't cry ourselves to sleep.

And now, a whole year later, I still cry myself to sleep. But not because of fear, not because of the unknown, not because I'm scared. Now it's because I miss my baby girl. Because what I thought was my worst case scenario was actually my reality.

Last year, on October 21, if I had thought "what will I be doing next year at this time?" those thoughts would have most certainly included an 8 month old baby who'd be babbling and scooting around and smiling like crazy. But October 22 changed all of that. October 22 this year will be spent at the cemetery, with arms that ache to hold the sweet baby that we saw on the screen for the first time one year ago. Even though the doctors only saw her imperfections at that time, one year later we know there are no imperfections. She is perfect and whole and in the presence of the Lord Almighty. And we can praise Him.

He created her inmost being, He knit her together in her mother's womb.
We praise Him because she was fearfully and wonderfully made; His works are wonderful, we know that full well.
Her frame was not hidden from Him when she was made in the secret place. When she was woven together in the depths of the earth,
His eyes saw her unformed body. All the days ordained for her were written in His book before one of them came to be. (Psalm 139:13-16)

Friday, July 10, 2009

To Write their Names in the Sand

I have found a beautiful website, and I am so thankful for what they do. If you click here: http://namesinthesand.blogspot.com/ you will be taken to their homepage, and if you click here: http://namesinthesand.blogspot.com/2009/07/reagan-joy.html you will be taken to what they did for Reagan. (you can also search in the upper left corner of their blog, for "Reagan Joy"). Isn't it beautiful? I am so thankful for little things like this that confirm for me that my little girl lived, that someone cared enough to do something for just her, and that we can hold onto the image of her name.

I requested the same thing for little Sadie Grace, so if you do the same and search for her name, you'll see the beautiful photo in her honor. (I love you, Kerry!)

Sadly, this site is also a potent reminder of how many families are hurting from the loss of their babies. I'm thankful for the way it makes me feel like I'm not alone, but I'm sad for the other hurting families. But, thanks to Carly's service with this site, there is a way to specifically pray for the moms, dads, sisters, brothers, and friends who are missing a little one right now. Won't you join me in praying for them, and honoring their children?

Tuesday, June 23, 2009

23rd

I'm feeling the need to post something here, even though I have no idea what I'm going to say. Today is the 23rd, which always takes me back - especially from 3:20 p.m. on the 23rd to 3:38 p.m. on the 24th. A few people asked me how I was doing today, and while from the outside it appears as if things are "perfect", on the inside I'm longing for my little girl. Since today would be her 4 month birthday, I laid in bed a little longer this morning just thinking of her, and she's been on my mind all day. I just watched the 14 minutes of video we have so that I could hear her, I could see that we touched her, and I could watch her move. I saw myself whisper in her ear, I saw her move her arms and legs when her Daddy rubbed her foot, and I listened to her little gurgles when she was breathing. I have the biggest lump in my throat just thinking about all of it, worried that I'll forget those details and sad that some have already been forgotten. Everyone says time heals, but I feel like time just softens the blow a little bit because it's not so fresh. I guess in some situations that's good, but I hate the feeling that time is passing and she's never going to be here with us again. I'm going to try to figure out how to post a snippet or two of our video. Since it was an emergency c-section, we weren't exactly prepared with the video camera, fully charged. That's one of my regrets, but I'm so thankful that we at least have something.

Today is the 23rd, Reagan was born on the 23rd, and the 23rd Psalm keeps popping into my head. Reagan's Grampy read this Psalm in her room that day:

The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for His name's sake.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; Your rod and Your staff they comfort me.
You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.
Surely goodness and mercy shall follow me all the days of my life,
and I shall dwell in the house of the Lord forever.


Tuesday, April 28, 2009

Sadie Grace

Today I received the heart-wrenching news that my close friend Kerry (my roommate from college) lost her daughter at 37 weeks. She has had a healthy pregnancy and was due on May 21, but after sensing a decrease in the baby's activity, she went to the doctor last night. No heartbeat was found. Kerry and Jeff went back home and scheduled a c-section for tomorrow, Wednesday, 4/29 at 12:30 mountain time. They will have the day to hold and love on their little girl, Sadie Grace, who has already gone to be with Jesus.

I guess I'm the one person who should know what to say, but I don't. I just love Kerry and I want it to be okay, but it's not. I want our daughters to be friends here on earth, but they're not. My immediate response was just that I want to be there for Kerry. Then my thoughts drifted to two little girls, dancing together in Heaven, while their mommies cry for them here. I just don't understand it. I don't think I can and I don't think I will.

I'm not sure who checks this blog anymore, but I know there are a lot of prayer warriors out there. If you are one of them, would you please pray for Kerry, her husband Jeff, and their little boy Caleb (almost 3)? Please also pray for my friend Sarah and I as we are flying out to Colorado this weekend to be with Kerry. I know I need to be there, to hug her, to listen, to cry, to help, and just to be with her, whatever that looks like. I'm a little scared of how this will affect me, as the wounds are still so raw, but I trust in God's timing. I pray that He will use me and that this will provide some healing for both of us.

Somehow this makes me miss Reagan so much more, if that's even possible. But I love the picture I have in my head, of two little curly headed girls, just like their mommies, sharing the best of times.

Wednesday, April 15, 2009

April 15, 2009

Dear Reagan,

I wish you were here. Today was moving day at our house, and even though it was crazy, I wish you were here. I wish we could have brought you home. You would have been able to either sleep in mommy and daddy's room, or we would have set up the prettiest nursery for you in a beautiful green room that was waiting for you. But you never slept here. Instead, I saw the movers break down your little cradle and bassinet to put them into boxes. We never used them. I sorted through all the little girl outfits we had gotten. You never wore them. They packed up all my maternity clothes. I no longer need them. All of those are signs to me that you are no longer here. And I wish you were.

Jackson is sleeping, Daddy is at swimming, and the house is full of big tall piles of boxes. Lots and lots of boxes. There's no work to do, no TV to watch, no dishes to clean or dinner to cook. It's just me and my thoughts, so of course those thoughts are full of you. I wish we were having a quiet girl night at home. I wish I was figuring out how we'd decorate the pink room that's waiting in our new house. But instead, I have to think of a new color to paint over that pink room, and it breaks my heart. Because I want that to be your room.

We'll be okay. The 3 of us (4 with Larry!) will move into our new house and it will become our very special home. We will be close to Grammy and Grampy, Aunt Gigi, our friends, lots of parks, the zoo, and our church. It's the perfect time for us to move so we can have all those things, but I just wish we could have all of those things AND you. I know this is for the best. I know God works all things together for good. I know there's a bright side. I know it would be hard to move with an infant. But I don't think it would be any harder than moving withOUT an infant.

Jackson has a little book called "Just in Case You Ever Wonder". For some reason it has become his favorite lately. It talks about all the ways that he is special, how God created him and gave him to us, how we'll always love him and take care of him, and a little bit about what Heaven is like. It says there is no sickness there, no pain, and that Jesus will be so close He can hug us. Well, we've added to that book. We now always talk about how you're there in Heaven too - waiting for us, not sick, and getting hugs from Jesus.

So just in case you ever wonder...you are so special, we love you, we miss you, and we're so thankful that God gave you to us. Please don't ever forget that.

I wish you were here.

Hugs and kisses,
Mommy

Thursday, April 9, 2009

April 9, 2009

Dear Reagan,

I've been laying in bed for over an hour and I just can't fall asleep. I've been snuggling with your blanket, my mind swirling with things I've wanted to share with you, things I want to tell you, wishing it was you I was snuggling rather than just the blanket. Daddy already wrote on here tonight when you were on his mind, and it reminded me that this might be a place where I could capture my thoughts for you. I hope that's okay.

Tomorrow is your daddy's birthday. I wish so bad that you were here to celebrate him. Do you have any idea how amazing he is? I'm sure you do. He loves you so much and misses you every day - you're the luckiest girl in the world to call him daddy. He is so strong and he is so funny. He would have made you smile and laugh, he would have played with you non-stop, and I know he would have spoiled you rotten. He spent hours with you when you would have been by yourself and I wasn't able to be there and he learned all about you during that time. I think you knew he was there, which is why you gave him some very special looks during your short time with us. I got him something very special for his birthday this year. It represents you, and I know he will hold it close to his heart.

We got two very special things in the mail today. First, we received your baptism certificate. Any time that I receive something with your name printed on it, I love it. It means you were here, you're a member of our family, and you have weight in this world. I love what it says: "Reagan Joy Glavach was presented to God by her parents for infant baptism". We don't see baptism as a way to get into Heaven, but we do see it as a covenant with God, and a way for Him to put His mark on our children. That's why we had you baptized the day you were born, and it added to the peace we felt with your passing.

I also received something very sweet from Laura, at String of Pearls. She sent a certificate for us to order a doll from Baby Be Blessed. I have wanted one of these so bad since I saw them on Angie's blog. I can't wait to design one for you with our special verse, 1 Samuel 1:27-29.

Jackson and I took a long walk to the park today. As we were walking I kept looking down at the stroller - thinking about how we had intentionally bought one where a second seat could be added. I kept looking down, wondering what it would look like if I had my little 6 week old daughter in the back, with her big brother riding up front. I know it's selfish for me to want you here for those little moments, when they pale in comparison to what you have in Heaven, so just know that we think of you all the time, in the big moments and the little ones, and we miss you.

Your Grammy gave me a great devotional last year called "Jesus Calling." It was a comfort to me in the fall when we first learned about how special you would be. I've been behind on my reading, but picked it up this week to catch up. Even though your birthday is February 23, the date March 10 has always been special to me because that was my due date. I've had your name on my calendar on that date for months, and 3/10 is especially meaningful now as well because you weighed 3 lb. 10 oz. I flipped to the reading for 3/10 and this is what it says:

"You are with me for all time - and beyond time into eternity. No power can deny you your inheritance in heaven. I want you to realize how utterly secure you are! Even if you falter as you journey through life, I will never let go of your hand."

I cried as I read those words because not only do I feel that you are with me for all time, but I know that you are with God for all time, and so am I! It made me realize that yes, you are utterly secure, and even though I had to let go of you, God hasn't let go of you, and He hasn't let go of me.

We love you and are so proud of you.

Love,
Mommy

My beautiful daughter and her beautiful blue eyes...

I miss my daughter. She had the most beautiful eyes. There's a picture of her where she was looking at me, then she closed them and passed away shortly there after. It is tough to look at, but it helps. It helps me remember her, it helps me think about her. I wouldn't change anything. We have been really busy lately because I am getting transferred, but it's to our home, and it is close to where Reagan is. I have never been a "graveyard person," but I never had someone there that I really cared about. Every time we are able to go see her, we do.

If you are reading our blog and recently found out that your child might have Trisomy 18 or a Trisomy disorder, quite a few doctors gave us "options"....and you know what I'm talking about. One doctor even said that we were doing a very noble thing by keeping her. What does that mean? I think it is unfortunate that doctors would recommend that, but I guess they were "keeping us informed."

No doctor can take away my daughter. No doctor can take her away from me, and her beautiful deep blue eyes. I miss them, I miss her. I love her and I always will. No one can ever take that away from me.

God Bless all of you. Thank you for your continued support. You have no idea how humbling it is to have people you don't even know around the world praying for you.

Dan

Thursday, March 12, 2009

More Pictures

We've found that our favorite way to spend time these days is to just stare at pictures of our baby girl. Thought you might want to do the same. These weren't taken by our amazing photographer Molly Grace, but we just found my camera and were excited to see lots of new images of Reagan Joy, taken on Tuesday morning, 2/24.

Dan and I went to see her first thing that morning, and she then got to meet her Aunt Karen and Uncle Landy for the first time.
Reagan's first time meeting her Aunt Karen, who flew in from Denver:
Reagan's first time meeting her Uncle Landy, who flew in from Miami:
Grandma and Grandpa Romig, Aunt "Doe" (Michelle, but all our nieces and nephews have given her the nickname Aunt Doe), Aunt Karen and Mommy, checking out our little sweetheart:
Grampy, Uncle Landy, and Daddy doing the same:
Daddy sharing a sweet, proud smile with his strong little girl:
This is the first time I got to hold my baby. This was Tuesday morning, in the NICU, before we went up to a private room to spend our last moments with her. I love how much she looks like Jackson in these pictures. Just wish I could have even just a few of these sweet moments back.





Thursday, March 5, 2009

Dear Reagan

We have had a few people request copies of the letter we read to Reagan at her memorial service on Friday. It is pasted below.

Dear Reagan,

As your mommy and daddy we keep wishing that we could just talk to you more. We feel like there are so many things we want to tell you.

First and foremost, we want to make sure you know how much you are loved. We feel like our hearts almost left our bodies the day you left us…but that’s okay because they are with you. You have our hearts and we wouldn’t have it any other way. We love you so much it hurts sometimes, but as impossible as it seems, Jesus loves you even more than we do, so we trust you to Him.

We want you to know that we are proud of you. We are proud of you for fighting for as long as you did. We are proud of you for crying the minute you came out so we knew you were okay. We’re proud of you for being brave through all the tests, all the machines, and any of the minutes when we couldn’t be right by your side.

Not only are we proud of you, but we’re proud to be your mommy and daddy. We are so glad that God would choose us for you. We wouldn’t want anyone else to do it and we’re proud that you are our daughter. You’ve allowed us to do things that we never thought we could do and we thank you for that. We are stronger because of you.

We also want you to know that you have made a difference. Lives have been changed and your little 3 lb. body impacted many people around the world in the 24 hours and 18 minutes that you were on this earth.

We will never forget you. We won’t forget the color of your skin, the perfect bend in your knee, the wrinkles on your forehead, your dark blue eyes, the shape of your fingers, the curls on your head, your cute little ears, the smell of your hair, the sounds and squeaks that came out of your perfect little mouth, and the way we rejoiced each and every time you opened your eyes to look at us.

Thank you, Reagan Joy, for everything you gave us. We spent the sweetest, most wonderful 24 hours with you and we want to hold onto every second. We always tell Jackson that he’s our favorite little boy, and we want you to know that you’re our favorite little girl. We miss you more and more every day and weep for our loss, but rejoice that you are healed, you are perfect, and you are in Jesus’ presence. We can’t wait to see you again. Thank you for being our daughter. We will forever love and cherish the time we had with you.

Hugs and Kisses,

Mommy and Daddy

Monday, March 2, 2009

Thank You

We plan to update everyone with more detailed posts soon, but in the meantime, we just need to say THANK YOU. For the prayers, for the comments, for the meals, for the cards, for the gifts, for the encouragement, for your presence with us (both in person and in spirit)...we couldn't do this without all of you. We have read all of the comments and wish we could respond to each of you personally, but we just can't quite yet.

Please continue to pray for strength, for healing (both physical and emotional), for peace, and for direction as we try to navigate this new chapter. The tears continue to pour as we miss our little girl. Please also pray that we can focus on the positives, and that we might be able to overlook those things that we may have missed or those things we cannot change.

And to our sweet Reagan Joy,
Happy Birthday baby girl. We so wish we could have celebrated one week instead of just one day with you here, but we try to find comfort knowing you are healed. All day today we've been staring at the clock recalling every minute of what we did with you one week ago today. We wish we could do it all over, just to have more time with you. We love you more than words could ever express.


Thursday, February 26, 2009

In lieu of flowers



In lieu of flowers, Mar & Dan are asking that you consider a donation in Reagan's honor to the non-profit organization, String Of Pearls. Please visit their website for more information: stringofpearlsonline.org

Wednesday, February 25, 2009

Service Arrangements

Services for Reagan Joy will be held at College Church of Wheaton (332 E. Seminary Ave. Wheaton, IL 60187) on Friday, Feb 27th. Visitation will be at 10:00am and the service will begin at 11:00am. The interment will be at the Wheaton Cemetery immediately following the service.

Update Wed. 2:30pm

Just wanted to update that Mar was discharged from the hospital this afternoon. Dan and Mar's family will continue to stay with them for the next several days. 

There is a tentative plan to have Reagan's memorial this Friday, Feb. 27. I will post more when I know the details.

Tuesday, February 24, 2009

If just for a day

If for just today we got to hold her, and love on her with all our might and strength and soul, then we did, and it was wonderful. She was perfect, a treasure, a little tiny joy from heaven that was ours. Thank you Reagan for spending this day with us.
-molly grace





















Reagan is with Jesus!

Shortly after celebrating her one day birthday, sweet baby Reagan has gone home with Jesus. Praise God for His love and faithfulness and that Dan and Mar are surrounded by loved ones at this time. Thank you for your continued love and prayers.

Reagan Update Tues. 12pm

Dan and Mar will be moving with Reagan to a private room where they will be able to spend time with her this afternoon until Jesus calls her home. This precious time with family will be treasured forever. Please continue to pray for them, especially during these last hours.

Strong and Mighty

You can tell that little Reagan is rocking our worlds. She is beautiful and strong and mighty, a perfect daughter of the lord above who loves her. Through out last night there were moments, big and great ones, small and sweet ones, and you can tell those around her are savoring her, are soaking her in, and loving her. For tonight and for always, she is ours....