Friday, December 23, 2011

The penguin sweater

Tonight we went to Target to finish up a few holiday purchases. I wasn't expecting it, and there it was. It had been missing the last few times we'd been shopping but someone had replaced it and it was staring at my husband and I like it had been put there just for us, to mock us.

 "Damn it," said my husband, under his breath. See, we both know, that Jonah would have worn that sweater. It would have been part of his Christmas outfit. I can just see him in it, with little black pants or tiny baby jeans. He would have had little glasses by now, he may have worn an earflap hat, and he definitely would have been kicking his socks off. I can almost feel his warm little body snuggled up in the fabric.

I made it through the rest of the shopping trip not realizing how affected I had been by this stupid sweater. I was getting my other kids in the car when it hit me like a slap across the face. Our minivan has an extra seat now. It has an extra seat because Jonah's not in it. I started to cry. An empty sweater, an empty seat.

We made another stop on the way home and while my husband was in the store I decided at my own risk to go through the pictures on my phone. There are many of Jonah. It's hard to look at pictures of him chronologically backward as he progresses from a very delayed child to a perfectly healthy newborn. The hardest part of all is seeing his beautiful face and it feeling almost like a dream. Losing him, there's been a paradox where he feels so close and yet so far. He looks so familiar, so tangible, but he doesn't feel like mine anymore. It feels like just yesterday I held him, but also like a lifetime ago. I cried harder. An empty heart.

My daughters asked why I was sad. I told them what I always tell them, that I am missing Jonah, and I added that I wish Jonah could be here for Christmas with us. I don't remember which one tried to comfort me by saying maybe Jonah could come home after Christmas. It's exhausting to remind them over and over again that he is never coming home. They are beginning to understand. Explaining loss to toddlers and preschoolers is another post entirely.

I pulled myself together, and when we got home I put the kids to bed. My husband and I watched a bit of White Christmas. He commented that it must be hard to be deployed away from your family. I replied that, in a way, we are. We are deployed and Jonah is home. We are longing for home and longing for him. I am happy for Jonah and sad for us.

Tomorrow afternoon I will go to Mass with my family and wrangle my little ones. I will sing and pray and likely cry. I will celebrate the birth of a baby boy when I am longing for my baby boy. I will go spend time with family when I wish I was showing off my sweet little guy at the charming age of 9 months in his darling penguin sweater and new glasses.

I will remind myself of the work God has done in my life in the past two months, of how far I have come, of how well I have been used. I might lose it if I have to sing or hear "Silent Night."

I will remember all those who are struggling with grief this season. I will give thanks for my blessings.

I will celebrate. I will cry. I will pray. I will remind myself that all longing is really a longing for Christ.

I'm not mad at you, penguin sweater. You're adorable. I just miss my baby.

Sunday, December 4, 2011

A day in the life

Yesterday was Saturday and we had big plans. In fact we had many different fun events on our calendar from which to choose. We were going to go to my husband's work to have breakfast with Santa, then dance class, then maybe the grocery, and then there was something else on the calendar that I couldn't remember. We had been talking up the work breakfast with Santa all week and the girls were super duper excited.

Of course when we have nothing to do (M-F) around 7:45 am I have two little girls jumping on my bed and asking for breakfast and if it is Christmas yet. On Saturday morning, they slept in. So a showered and dressed husband and I were leisurely getting things ready to go to the car, sippy cups, dance class things, etc. Finally the girls got up and it's a little later than we had hoped. so we decided our son would miss his dance class (a half hour mommy and me class) in favor of breakfast with Santa.

We got the kids dressed and we got into the car. Then, my husband asked me, "Do you have the tickets?" I did not even know this event required tickets. I knew hubby had paid and made reservations for us but as far as physical tickets I had no clue. He told me he had pinned them to the bulletin board. I assured him I wouldn't have done anything with them and that I had not even seen them. He looked for a while, then I went inside to look. We were already running late and the clock was ticking. I went inside and as soon as I looked at the bulletin board my stomach sunk. I had thrown away what I THOUGHT were the tickets to a beer and wine tasting our church was having a couple weeks ago. I hadn't even looked at them. I knew the awfulness of what I had done so I rushed upstairs to the computer to figure out a plan B. I knew the autism support group was having a Breakfast with Santa that morning as well. I made sure we would make it before it was over and I scribbled down the address.

I jumped in the car, mad at myself and told hubby that I had thrown the tickets away but that we had another Breakfast with Santa. The kids were getting restless. The girls were chattering on about Santa and breakfast and Santa being at Daddy's work. I told them that Santa was not going to be at Daddy's work after all but was going to be at a church now, where the support group was having their shindig. They reluctantly agreed to the change of plans and we hightailed it to the 2nd Breakfast with Santa.

This Breakfast with Santa was scheduled to last until 11 and we got there around 10:40. We were greeted by a very nice lady elf who told us that they thought everyone had already seen Santa and so they let him go home. Thankfully the people there were just lovely. The elf played with my kids, they offered us breakfast even though we were incredibly late and didn't get to RSVP AND we were allowed to go on a horse and carriage ride around the parking lot even though we had not made arrangements in advance. I was pretty impressed with this group and I can't wait to get more involved.

So the girls were still upset that they hadn't seen Santa. My husband ran to grab some bagels for a quick breakfast (it was 11:45 by now) and I told the girls I'd call Santa. Santa told me he would be at the zoo that evening so I decided we would plan on that. The festivities at the zoo didn't start until 5pm.

After the girls had dance class, we decided to go for a drive. Hubby and I have been thinking of moving to a more walkable area so we drove around and looked at the outsides of some houses. It was getting close to 2. The kids were hungry and the girls wanted grilled cheese. Hubby started to pull into the Steak N Shake. My oldest got all excited but I didn't really want to eat in the car. I suggested we go to this quaint diner place with ice cream and have lunch there. Hubby agreed so we pulled away from the Steak N Shake which caused a slight meltdown. The theme of this day so far is that I am NOT getting the Mom of the Year award!

When we got to the Cow Palace (yes the restaurant is really called that) we waited what seemed like forever. My son wallered all over me like a fish out of water and we sat there waiting to be seated when finally one of the waitresses told us we could go ahead and sit down.

Lunch was great. The girls ate grilled cheese and fries. My son drank about 3 cups of milk. It was a special fun treat day so we got dessert. This place has clown cones, which the girls were JAZZED about. One wanted pink and the other one wanted green. My son got a plain banana. We had a fun time. At one point my hubby got up from the table and he accidentally knocked over his chair. My oldest daughter immediately responded with  "WAH, WAH, WAH' like the losing sound on a game show. We thought this was pretty funny. I took the girls to the potty, we all went potty, washed our hands and dried them. The girls were clean and I was basking in my success until I saw them both LAY DOWN on the bathroom floor. GROSS!

We ran home to grab our camera (with a dead battery) and headed to the zoo, which was more crowded than I have seen it in my 30 years of life in this town. Although we had to wait in line for what seemed like FOREVER we got to see a very nice Santa who spent plenty of time attentively listening to my oldest's very specific list and even gave the girls an extra candy cane for me. Sweet!

We realized after we got home that the thing we had forgotten on the calendar was the moms' group get together from our church. I was disappointed that I'd missed it, but I'd had a fun day nonetheless. It was nice to just spend the day enjoying the company of my family.

Despite the detours, we had a great day. We laughed a lot. There were some sad moments. In the Santa line it seemed like I was surrounded by baby boys. For a minute I thought I wouldn't be able to stand it and then I took a deep breath, said a quick prayer and focused on my girls having fun seeing Santa. The other sad thing was that I kept imagining how much Jonah would have enjoyed looking at all the lights. It would have been so visually stimulating for him and it would have been amazing to watch him take it in, wide eyed. Before his glaucoma surgery he barely opened his eyes at all, but afterwards he opened them often. I would have loved to share all of this with him. I miss my little guy so much. I have been praying every day that God would restore some joy and laughter into our lives and I am so grateful that He has. I honestly wasn't sure what life would be like after Jonah's death. Although we have suffered an immeasurably painful loss, I can honestly say that life is sad and bittersweet, but happy too. Life is good and God is good.

I ask for your continued prayers and words of encouragement as we navigate the Holiday season. And if you knew Jonah, please take a moment to remember him with a smile.

Monday, November 28, 2011

Thanksgiving 27-30

Our computer broke last week so we had to get a new one. I'm back and I've had a lot of thoughts I've wanted to write about. First, though I want to finish my thankfulness project.

27) I am thankful for the Catholic Church, the Holy Spirit, the communion of Saints, and prayer. I have had membership in several churches in my life, and attended many more, but when I went to Mass as an adult I knew I was home. I'm thankful that there is a Holy Spirit to live in us and guide us in this world that is full of so much suffering. I'm thankful for the Communion of Saints both in Heaven and on Earth - for my family in Heaven who are closer to God than I and are willing to pray for me, and for my friends here on Earth who are willing to be with me in person and share their love, prayers, support, and casseroles.

28) I am thankful for the promise of Heaven and the redemptive work of Jesus Christ. Although I am a Christian, and consider myself a believer, I naturally drift toward unbelief. This is just how my mind works, and part of my struggle with faith. I don't know if I ever cared about Heaven before Jonah died. I care now. I hope that Heaven is real and that it is wonderful. Not only is God there, but my precious treasure Jonah is there and that's where I want to go when I die.

29) I am thankful for books written by people much wiser than I. I can't seem to get enough of reading lately. If you have suggestions, I would love to hear them.

30) I am thankful for the women who have traveled this road before me. I'm not thankful they had to lose their children, but I am thankful to have people I can talk to, blogs I can read, and support groups I can attend where I am not alone in my grief.

Tuesday, November 22, 2011

Thanksgiving 17-27

17) I am thankful for my high school friends. These are friends who have seen me at my most ridiculous. If you can love someone through her awkward preteen and teenage years (and mine were especially awkward, angsty, and ridiculous) you deserve some sort of prize. Thanks for loving me despite my many, many flaws. I love you, too.

18) I'm thankful for the friends I met in college. I got the privilege to sing and make music with some fantastic people. I had fabulous, funny, loving and talented friends from the music department, friends from the theatre department (which I wholeheartedly wish I had been more involved with because those were some amazing people), friends I met through Spanish, Gospel Choir, or other extra-curricular activities, and the dear, lovely, and hilarious group I lived in such close proximity with. They taught me to love country music. They helped me to learn to like myself. I did a lot of growing up in college and I'm lucky to have had support from some of my best friends still to this day. I also had a few really amazing professors.

19) Speaking of college, I am so thankful that I got to spend 5 years doing one of the things I love the most - singing! Even though I didn't go to graduate school for music, and it didn't lead to a career for me, I feel blessed I got to sing so much and learn so much. I really do love the challenging type of singing I studied in school and I miss doing that kind of work.

20) I'm thankful for my dog eating the food my kids drop on the floor. Yes, seriously. Before we got her I swept a kajillion times a day. I did not want a dog, but as far as dogs go, she's pretty cool.

21) I have a comfortable, warm house. I have electric lights, running water, heat, air conditioning, an electric stove, washer and dryer, a yard, a fridge and luxuries too numerous to count.

22) Even though I have Marfan Syndrome, I have been able to carry four children to full term. I am grateful that my disorder was discovered early in my life and that I have been treated successfully with activity restrictions, medications, and surgery. Although I carry extra weight, I am otherwise healthy and I am so grateful.

23) I am thankful to have been able to carry children at all. My heart grieves for my friends who want to carry a child and cannot. My heart also grieves for the children who need families. I know how lucky I am, and those of you who struggle with infertility have a special place in my prayers.

24) I'm thankful for the change in seasons. Weather in the midwest is not always awesome. I'm pretty sure I haven't seen the sun in ten days. There's a lot to complain about, but I really do love the fresh greenness of spring and the crisp coolness of autumn. I will even concede that there are some things I like about summer and I can even get behind the enthusiasm for the first snow of the season.

25) I'm thankful for things that help make me feel pretty; the occasional pedicure, makeup, lotion that smells nice, new clothes once in a while, and my friend Autumn who cuts my hair.

26) I can't believe I waited so long to say this but I am thankful for my Marfriends! I don't have as many friends with Marfan as I hope to have someday, since I'm kind of newly getting involved in the community, but I have met some wonderful ladies who are near and dear to my heart. My wonderful friend came to stay with me after Jonah died and she was of utmost comfort to me. She blogs at :)

27) I'm also grateful for my internet friends, the Babyzone girls. We were all on a message board together when we were due with our babies born in May of 2007. Over four years later, a lot of us are still friends and keep in touch. How cool is that? Several I have met in real life. This is a really great group of ladies and they have supported me through a lot of things that have happened in my life.

To be continued...

Monday, November 21, 2011

More Thanksgiving (the family edition 5-16)

5) My stepmom, Janice. She makes my Dad so happy and she loves my kids. She has been so good and kind to me and my family. She has so much energy and is always thinking of something fun to do!

6) My mother-in-law, Mary Ann. She raised my fantastic husband and she is so generous to us. She would never let us go without. We have a great time when she visits! I would also like to say that our dog, Sammie, is also very grateful for Mary Ann and the snuggles and treats the doggie gets when Mary Ann comes!

7) My Dad. Growing up I knew he was always there for me. As an adult I realize how valuable and rare that is. Dad and I have shared many laughs and tears through the years.

8) My brother, Elliot. I love my brother. We have so many memories, both awesome and sad. I will always admire him for the way he cared for my mom when she was on hospice. I am so proud of my little brother, and grateful to have had a sibling to walk through life with.

9) My mom. She was my closest friend. We had so much fun together, and also had our share of passionate disagreements. I am thankful that she lived for so long after she was sick. I'm thankful she got to be there throughout my childhood, when I graduated, got married, and had Melody. I'm grateful that for a brief time, my mother and my child shared this planet. I know that Melody won't remember my mom, but it is comforting to know that she felt Mom's touch, heard her voice, and knew her love.

10) My beautiful Melody. She made me a Mommy! She has so much imagination and her heart is full of love. She is also a beautiful singer!

11) My spunky Lila. She has personality to spare. She is so bright and sassy, but also very sweet.

12) My sweet Isaac. He is jolly, good natured, and fun to be around. He makes me smile. I am so proud of the progress he is making in his therapies.

12) My beloved Jonah. What can I say that I haven't already? I will always love and miss him. I pray for a day when we will be reunited in the next life. I am thankful for the time we got to spend together.

13) My grandma Helen. I love my grandma. My kids love my grandma. I feel lucky that we get to have her around.

14) My grandma Lou. I admire her class and poise. She is so generous with her time in showing us houses pretty much whenever we want . She has brought us meals and apples numerous times when we were having a difficult situation. I am thankful for her kindness and love.

15) My step-sister, Maggie. I always wanted a sister and I am looking forward to getting to know her better!

16) The rest of the family. I have many aunts, uncles, and cousins who make my life richer and more enjoyable. I also have Grandparents and a father-in-law in Heaven, and I'm glad I got to spend time with them. Justin also has a grandmother who is still living, and she is an awesome cook and very funny!

That's all for now, more to come.

Thursday, November 17, 2011

Thanksgiving 1-4

I have been watching people post on facebook daily the things they are thankful for in life. Here are mine, one for every day in November.

1) For my son Isaac's therapy team. What wonderful people I have the privilege to know! Seriously, we are lucky. Our therapists are awesome. They are compassionate and kind. Not only have they helped my son make great strides in his development, they have listened to me being almost constantly stressed. Two of the therapists worked with Jonah as well and it is so nice that they held him, and that they remember him. They are not only our therapists, they are our dear friends. I will be so sad when Isaac ages out of the therapy program in February, but I hope they will keep in touch with us and I wish them all the blessings life has to offer.

2) For my husband. Since marrying in 2005, we have been through a lot. He sat by my side when I was pregnant with our first child and had food poisoning. That was not a pretty picture and I knew from then on I had a winner. Earlier this year he revisited his caretaking role when I broke my ankle and needed help for almost everything. We have each lost 2 grandparents during our marriage as well as him losing his father and me losing my mother. We have given birth to 4 children, including one set of twins. We have miscarried a baby. Of course the most difficult thing so far is that we have buried our beloved child. Together we have navigated medical appointments and special needs services for our children. We have a long but hopefully rich journey ahead of us. I'm grateful to have a steady partner in life.

3) For my OB office. I know this might be a strange one, but this is just another place where God has put some truly amazing people into my life. Everyone who works there is so caring. Three of the ladies who work there came to Jonah's visitation to support me. I am honored to call them friends. I am grateful to know that when Justin and I are ready for another child, these people will be there to support us and help us through another high risk pregnancy with no judgement, only love.

4) For my inheritance from my mother. My mom didn't leave me money when she died, but she did leave me a rich inheritance of friends. Whenever I am in need they are there, to listen, to pray, to bring meals, to offer advice, to play with my kids, anything. I may have lost my mom, but she made sure I had lots of awesome mothers in my life!

More to come...

Thursday, November 10, 2011

8 months

Today, 11/11/11, Jonah would have been 8 months old. This is a letter to him. Only positive thoughts going in. If you would like to leave a thought for Jonah please feel free.

Dear sweet Jonah,
     Although I only got to hold you for 7 months, you were a bright and shining light in my life. We found out we were expecting you after a weekend-long playdate with the babyzone girls. I took a pregnancy test on Sunday and, to my surprise and delight it was positive. I yelled down the stairs at Daddy, "We're gonna have another baby!" and he said "Yay!" You were wanted and loved so much from the very beginning.

     When I was 8 weeks along I heard your heartbeat for the first time, and I got to see you on ultrasound. That was the first of many, many times I got to see you. Each time was so wonderful and I always marveled at the miracle God was creating in me.

     You grew strong and healthy. At 16 weeks we were excited to find out that you were a little boy! Nana was with us at the ultrasound and she was thrilled. I was so happy that you would be joining our family. I couldn't wait for Isaac to have a little brother to grow up with and play with. Soon after we found out you were a boy, we chose your name, Jonah. I had a very difficult time picking your siblings' names but yours I knew from early on. I felt in my heart that it was the perfect name for you and it made me feel happy inside.

     On Friday, March 11, 2011 we went to the hospital to have you delivered. Your sisters were really excited that the baby was going to come out of my tummy. My surgery went smoothly and I will never forget the moment you were born. The doctor tried to hold you up so that I could see you. Even though I didn't get a good look I could hear your sweet cry. You were gorgeous. I remember saying that you looked like a Miller! Nana, Papaw, and Janice were there with Mommy and Daddy right after you were born. Everyone held you and talked about how wonderful and handsome you were. We chose your middle name, Edmund, after your Great Grandpa Eddie. When Grandma Lou heard this she said Grandpa would have been very pleased.

     We had lots of visitors while we stayed in the hospital. We both did so well that we got to come home after only two days. The day we brought you home was the happiest of our lives. Our family felt so happy and complete. Daddy took an extended leave so that he could have some special time to get to know you. Your sisters and brother were very happy and enthusiastic to meet you. Your sisters liked to help me take care of you.

      I got to spend Easter and my birthday with you. Then I broke my ankle, but Daddy stayed home to take care of me so we got lots of family time. Daddy would take care of your brother and sisters while I laid in bed and snuggled with you. We did lots of nursing too! Then I got to spend my 4th mother's day with my 4 beautiful children. Even though my leg was in a cast I felt like the luckiest lady alive. You made us feel so whole.

     Jonah, you were so beautiful. You had eyelashes that were a mile long and sweet, pouty lips. You had an adorable dimple when you smiled. You had huge beautiful blue eyes. You were soft and warm and snuggly. I knew just the right ways to hold you to make you feel safe and secure. I spent a lot of time holding you because I was the best at comforting you. That's what Moms are for. I loved your fuzzy warm head and your soft spot. I loved nuzzling your neck and rubbing my cheek on your cheek. I loved to hold your hand and squeeze your precious feet. You were such a gift to me and to this family. It made my day when your brother was softly rubbing your little head. Your sisters loved to play with you and make you laugh.

     When you were born, I planned our future with you in my mind. When you died, that future changed. It is my hope that our faith is true. I hope that you were greeted by the people that love you. I hope my Mom carried you up to Heaven to show you off to God and to our friends and family. I hope you were surrounded by love, and light, and warmth and peace. I want to believe since I didn't wake up when you passed away that it was very peaceful. If I had known that was my last night with you I would have held you all night. Know that I will forever hold you in my heart.

     Thank you God, and thank you Jonah, for the 7 months, plus pregnancy I was given with my dear son.

     I hope I live a long time, Jonah. I have to take good care of your brother and sisters and of Daddy. Let's make a deal, though. When I die, will you promise to come be the first to greet me? The first thing I want to do is hold my sweet boy again. You and Ashtin watch out for each other until Daddy and I get there. Mimi and Papaw Kenny will take good care of you.

Eternal rest grant unto him, O Lord
And let perpetual light shine upon him

All my love forever,
Ashley (your Mommy)

Sunday, November 6, 2011

Heart on my Sleeve

The loss of a child is uniquely hard. I have heard one reason is because the natural order of things is for children to outlive their parents, not the other way around. I have been reading a book, After The Darkest Hour, the Sun will Shine Again by Elizabeth Mehren that is full of stories of parents and the loss of their dear children. It is a coping manual, but it doesn't offer much hope. Even earlier than the 20th century, when infant and child deaths were much more common than they are now, parents grieved with heavy hearts over their lost children. I say lost, because it is too difficult for me to say dead.

In a time when it was all too common for families to lose multiple children to disease or other causes, the mourning of parents was still especially painful. I believe this is because God knits parents, especially mothers, to their children in a special way. Jonah was the heart I wore on my sleeve. He was my heart beating outside of my body. This is necessary from a biological standpoint. Children wouldn't survive at all if it weren't for a loving caregiver. Even after the baby dies, the connection remains and the mother is left disoriented.

In the Bible, in Luke 15, Jesus tells the famous parable of the lost sheep. I know this parable is meant to illustrate God's joy in conversion, however it seems especially poignant to me right now. Even though I am so grateful for my three living children, my husband, my family and my friends, I pine for the lamb who is lost. It's hard for me to believe, but I am trying my hardest to believe my little lamb is in heaven with the Lamb of God.

I feel that soon I will be expected to move on. Please be patient with me. I tire of my pity party as well, but I am waiting patiently for strength, healing, and peace. I know I will always miss my baby, but I hope that a time comes when I can remember him fondly instead of achingly, and when I can enjoy other things without feeling that I have abandoned him.

If you pray, please pray for me this week. Night time is the hardest because that is when I would have been snuggled in bed nursing Jonah. If you think of it, whisper a short prayer for me as you lay your head down to sleep. Pray for my peace, for my guilt to be alleviated. Pray for me to find joy in my husband, delight in my other children. Pray for me to remember Jonah but with a lighter heart each day. Pray for my faith, that I don't lose it, that I act lovingly toward others, and that one day I will hold my sweet Jonah again. Please also pray for two undisclosed intentions I am hiding in my heart.

From the bottom of my heart, thank you.

Books I am reading:
After the Darkest Hour the Sun will Shine Again
Safe in the Arms of God

Tuesday, November 1, 2011

Proof that life goes on...

 Even after this devastating tragedy, our life has gone on. It's certainly not the same, but for ourselves and our other kids it is important that we try to reclaim some joy in living. I have reached the point in my grief where I wake up and feel almost normal, only to be hit with a sick feeling in my stomach, remembering what (who) I have lost. But by then there are usually two beautiful little girls climbing on my bed and asking for breakfast so there's no time to cry. Here are some of the fun things we've been doing to keep life going for our family.

I want to thank my friend, Chrissy, for doing pumpkin decorating with the kids, because I wouldn't have felt like doing it. Also, my friend Angie, who brought her kids to ZOOBOO to spend time with us, even though we were pretty down that day.

My husband goes back to work this week. I don't have any idea how he will be able to do that. At least at home I can cry. I also have a very dear friend coming to stay with me so that will ease the pain of this week for me. Please keep my husband in your thoughts and prayers in a special way.

"...I came that they may have life, and have it abundantly." John 10:10 NAB

Saturday, October 29, 2011


I don't know why anyone would want to read this, I really don't. I don't know why anyone would read this blog, period. Sometimes I feel guilty for putting this sadness I'm experiencing out in the world. I've been on the other side, being a friend, family member, or internet acquaintance who has had a baby die. Reading about their experiences would give me a sick feeling in my stomach, a lump in my throat and a crushing anxiety that something like that might happen to me someday. Now it has, and I guess blogging through my worst nightmare is giving me proof that I am surviving it. Right now our family is surviving. Hopefully one day, I hope to be thriving again. It will take a long time and the grace of God to get us there. So, to those of you who read this and prayerfully consider our family, thank you and God Bless You.

So...funerals. As a child and even a teenager and young adult I didn't understand the point of funerals. I felt that we, as attendees were probably intruding on what should be an intimate time of grief. Funeral homes were depressing and the services always seemed so sad to me. I couldn't understand the point of doing something so painful as planning a funeral service when one is already grieving. I never knew what to say or even how to feel. If you are a Christian, there's the paradoxical view that although we are sad the person is no longer with us, we believe they have moved on to a heaven that is joyful, eternal, and filled with the love of Christ. We are supposed to be reminded that as Christians we will enter into that Kingdom one day and be reunited with that loved one we held so dear. So essentially the tears and sadness are our selfish desire to keep that person here with us.

That's a lot easier to deal with when the person who has passed away is 90 and has lived a full life. That person may be in failing health or on hospice or he may pass peacefully in his sleep. I remember two sets of great aunts and uncles and their deaths. It was very sad when the first spouse died, then the remaining spouse passed away shortly after and there was almost a tangible sense of relief. We believed them to be together once again, the heartache erased and their physical burdens taken away. We had such fond memories of them, and hoped they were in a better place.

But Jonah was a baby. He was 7 months old. He had just begun to live. I attended to his every need. I never left him with another caregiver. I was never frustrated with him or wanted time away from him. I have few memories of him and since he had developmental delays, I don't even have a picture of his smile. I try to cement that sweet smile with the tiny dimple into my memory but I know it will fade. The feeling of holding him, of his soft skin, his warm downy head and his soft spot, his cheek against my cheek, nuzzling his neck, nursing him and caring for him; I know these memories will become less clear as time goes on. I have beautiful pictures and one video of terrible quality to remind me that he was real, that my baby was here. For 7 months I loved him from the depths of my heart and soul. I would have done anything to help him be healthy. I would have done anything to keep him here.

And back to funerals...while as a younger person I didn't understand the value of funerals, I do now. The people who came to Jonah's visitation with love and sadness pouring out of their hearts for us allowed us to feel that tiny bits of our grief were being taken from our shoulders. Maybe we arrived with 1000 lb. sandbags of grief. Even though our loved ones could only take the few grains of sand they could carry, the burden was lifted slightly. The love was tangible. The support invaluable.

As Catholics we celebrate a Mass of Resurrection. The idea is that we are remembering the promise of baptism, the promise of Christ's gift of eternal life. My heart was breaking as we revisited the baptism of Jonah only 3 short months ago. When we promised to raise him in the faith, we had a lot longer journey in mind. Grief is strong and there is little I remember of that Mass, but I know it was beautiful.

With my crisis of faith in full swing, I hold on to the memory of Jonah's baptism and funeral, and hope for his future in Heaven. I try to visualize the potential glory and beauty he is already beholding. I try to see him in the arms of my mother, who passed away three years ago. I try to imagine him frolicking with our baby we lost to miscarriage, and with the babies my friends have lost to this world. It's a difficult concept for me, a pragmatic thinker with tendencies toward cynicism and skepticism.

I pray that in this life God will reveal to me some of the beauty of his plan and give me comfort in the future reunion in Heaven with my sweet Jonah Bear. I miss you Jonah. 3/11/11-10/19/11

Thursday, October 27, 2011

Better is one day in your courts....

Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked. Psalm 84:10

My friend came to visit me today. 3 years ago she lost her precious 8 month old daughter. She is Evangelical and I am Catholic,  so we have some differences in what I call the "spiritual details", but we talked a lot about death, and missing our kids, and being selfish, and heaven. Lots about Heaven.

It is hard to believe in a merciful and loving God when something like this happens. I am not going to sit here at my screen and pretend to anyone who is reading this that losing your child does not inspire a crisis of faith. It does, at least for me.

I have empty arms and full breasts. I have a Jonah shaped hole in my heart. I have other kids that need me when all I want to do is crawl into my bed and stay there.

If there is one thing I have learned from my 30 years on this Earth, however, it is that you have to keep going. I have to be sad, to grieve, and to cry. I love this baby and I absolutely ache to hold him and kiss him and nurse him again. 

But the reality is, that isn't going to happen. Not in my lifetime. If there was something I could do to bring him back, I would have done it already.

So what now? My friend and I talked so much about Heaven today because it gives us hope. We pictured our children laughing together and excitedly waiting for the day they might see us again. Since they are having so much fun in Heaven with Jesus and all the Saints and Angels it will be like a short time for them until we are reunited.

This is what I am trying to picture, my baby safe in the arms of the Blessed Mother, surrounded by the peace and light and love of God. Why should I want to take him from such a wonderful place?

The reality is that this hurts. I am a human, and selfish or not I miss my baby. But I am choosing to put my faith in Heaven and in the beauty and love of God which I got such a sweet glimpse of through my perfect baby boy. I am choosing to breathe, to put one foot in front of the other, and to say thank you. Thank you for my beautiful children, for my friends, my family, my husband's job, our comfortable house, plentiful food.

And for the love of God. The love I know exists because of my longing for Jonah. I am an imperfect human being and yet my love for my child is so incredibly strong. If I can love like that, how much stronger is the love of God that inspired all other Love into being?

Jonah, I'll love you forever.
I'll like you for always.
As long as I'm living
My baby you'll be.

Tuesday, October 25, 2011

Unwelcome Guest

Grief is now an uninvited guest that is overstaying its welcome in our house. I am schlepping through life in a haze. I want to draw near to my other children and to my husband  and to God but the hurt is dizzying. A constant dialogue is happening in my head. Remember the old Looney Toons schtick where there would be a devil on one shoulder and an angel on the other, trying to influence the character? Mine goes like this...

Angel says, "You did nothing wrong. You would have done anything for your baby. You loved him the best you could and it was his time."

Devil says, "You should have known, Ashley. Why did you let him have this surgery? Why didn't you ask for another night in the hospital? Why did you go to bed when you knew your child was in trouble? You should have taken him to the ER. You should have known despite what the doctor advised.Why didn't you wake up as he died?"

Angel says, "His death was painless or it would have woken you. He was ushered into heaven by the angels and saints and his loved ones before him. He is in the full glory of God and he lives on in spirit."

Devil says, "He suffered and you were not there for him. Now he is gone."

Angel says, "Live on in honor of Jonah. Live a life of love and grace in his memory. Live generously and live in the hope that you will see him again in Heaven. You were chosen to love this sweet little boy for 7 months and then it was time to let him go."

Devil says, "You are a terrible person and an unfit mother. You don't even deserve to live."

Angel says, "Look at all these friends supporting you. God has sent them. You are loved and cherished. Your little boy was loved and cherished. Your friends and family will help you through."

Devil says, "No one is going to care anymore after a few weeks and they will tire of your constant sadness. You, on the other hand will grieve forever."

For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.
For the sake of His sorrowful passion, have mercy on us, and on the whole world.

Holy God, Holy Mighty One, Holy Immortal One, have mercy on us, and on the whole world.


Sunday, October 23, 2011

Jonah's story

We lost our dear sweet baby Jonah early Wednesday morning and the pain is almost unbearable. Many people are curious as to what happened with Jonah so I will tell his story here.

Jonah was born perfect, 8 lbs. 14 oz. and 21 inches long at 39 weeks via scheduled c-section. He breastfed right away and my milk came in like it was supposed to. We named him Jonah Edmund, Edmund after my grandfather on my Dad's side who had passed away. He was Grandpa's first namesake out of his many grand and great grandchildren.

Jonah completed our family. We were ready to throw in the towel on this baby making journey and call it a win. We had 2 gorgeous, dramatic, and spirited girls, and 2 wonderful, snuggly, adorable boys. Who could ask for more? Although we hadn't made any official plans to prevent a future pregnancy we both felt our hands were full and our pocketbooks were empty. We planned to use NFP to avoid more pregnancies. We had found out from cord blood testing that Jonah had Marfan Syndrome and would therefore have some medical concerns. We were at peace with this since I have the disorder as well as my 2.5 year old twins. We were prepared to help Jonah thrive despite the challenges Marfan has to offer.

Jonah thrived. He gained well on my breastmilk, and was cooing at his 2 month appointment. He was so gorgeous. Absolutely spectacular. Then something began to change.

By Jonah's 4 month appointment he was no longer cooing. He hadn't begun to babble as he was supposed to and his neck was still floppy. Jonah was not making eye contact or smiling or giggling like you would expect from a baby his age. These were not necessarily typical behaviors of a baby with Marfan Syndrome. Our other son had been robust and cheerful. Jonah appeared to be much younger than he actually was. He was extremely sensitive to light and rarely opened his eyes.

We discovered Jonah had congenital glaucoma. The doctors were confused as this is not usually a condition that presents in children with Marfan Syndrome unless they have had their lenses removed, which Jonah had not. Jonah had glaucoma surgery in both eyes and his demeanor improved dramatically. I will always remember when we were out at a pizza parlor and Jonah had his eyes open and was looking around for the first time.

We had stabilized the glaucoma. but we began to notice other concerns with Jonah's development. Between his 4 month checkup and his 6 month checkup, Jonah had lost over a pound. He was being described as having both hypertonia and hypotonia, and his developmental delays had become more obvious. Jonah's developmental pediatrician was very concerned about his weight and a g-tube was suggested. I was hesitant at first.

We tried Jonah on 3 different bottle types. His Occupational and Physical therapists tried and so did his Daddy to get him to take a bottle, but he refused. Jonah would not even close his mouth around the bottle nipple. We tried a supplemental nursing system (SNS) and Jonah would not tolerate it. He would push the tube out of his mouth and if the tube stayed long enough for the flow of formula to start he would pull off. I tried syringe feeding Jonah but he struggled and choked. Jonah loved to nurse. He had wet and poopy diapers and seemed to be nursing well but just would not gain weight.

After having several labs done which appeared normal, and consulting with a few lactation consultants, one of whom is likely the best in the state, my husband and I came to the difficult conclusion to have Jonah receive a g-tube. The date was set, 10/17, my husband's birthday. Our hope was that if we got Jonah's nutritional state under control then his development might have a higher likelihood of progressing more normally.

Jonah made it through the surgery fine. I was not allowed to nurse him directly after as I had been with his previous procedures under anesthesia but I did pump 5 ounces for him to save for his g-tube feeding later, and when I was able to I nursed him what I had left.

We spent the night in a lavish hospital room. A lot of the night is a blur. Jonah was very sleepy, which we assumed was because of the anesthesia. Jonah was started on 50ml feeds and the goal was to increase him to 105 ml feeds before he would be released.

The first 50 ml feed went wonderfully. I was holding my sweet baby on my lap and as the fortified breastmilk entered his tummy he became serene. If I remember correctly Jonah received his second feed while my brother and his girlfriend were visiting us in the hospital room. I was holding Jonah and we were laughing and joking and looking at silly websites. Things were going well.

3 hours later it was time for Jonah's 105 ml feed. Things dramatically took a turn for the worse. Jonah was visibly uncomfortable with so much liquid. He fussed and was trying to pull away from the tube while the nurse pumped 105 ml of formula into his belly in less than five minutes. I was crying and asking her to stop. Jonah threw up half of this feeding all over me. 3 hours later a second feeding went the same way. I begged for them to take his feedings back down to the 50 ml so I could nurse him and he would be more comfortable. Finally they agreed to take him down to 75 ml feeds every 3 hours but I was supposed to gradually increase him to 140 ml per feeding once I got home.

While in the hospital, Jonah vomited several times. He ran a fever and grunted while he breathed. I was extremely sleep deprived and not on my a-game. I will never forgive myself for not better advocating for him. I wish more than anything we had stayed one more night in the hospital, but my husband brought the other 3 kids up to stay in the room while we got Jonah ready for discharge and my husband ran some errands. When he came back we happily loaded our kids into the car and headed for home.

At 6:30 it was time for Jonah's first feed at home. I had pumped because he had been refusing to nurse since we started the larger feeds. I had plenty of breastmilk for him so I fortified it with the formula as I had been instructed and fed him through his tube. Jonah seemed terribly full and was now grunting with each exhalation.

After 3 hours I was supposed to feed him again. I checked Jonah and he was extremely bloated. His belly felt like a hard basketball and he was still grunting. I assumed he was very full so I skipped that feeding.

12:30 came along and Jonah's belly had not changed. My 2.5 year old daughter was up with stomach cramps and diarrhea so I helped her through it and finally she started to feel well enough to go to bed. It was around 1:30.

At this time I realized I had not fed Jonah in over 7 hours. This is a baby who nursed every 2 hours at the least. He was still grunting and bloated. He had vomited small amounts of dark brown mucus and there was some dampness around his tube button. I was very concerned and first called the nurses on the floor where we had stayed the night before.

The nurse I spoke to said that his symptoms could be normal but that his breathing was possibly concerning. She advised me to call either the doctor on call at the hospital or Jonah's pediatrician. I decided to call the pediatrician.

I didn't speak with Jonah's pediatrician but the one who was on call from the practice. She was extremely kind and helpful. She told me that a lot of what was going on was normal. She said he should be seen but she said that it could wait until the morning.

Around 2:30 after talking to some of my friends about Jonah's issues I went to bed. In my mind I had decided to hell with the g-tube. I was going to nurse my baby the next day and maybe give him an ounce or two at most through the tube each feeding to supplement. He just seemed miserably full and the whole point of the g-tube was to help him grow and develop not to force feed him. I tried to bring Jonah to bed to nurse him but he refused.

My husband woke me up at 7:30 before he left for work. I woke up horrified that Jonah had not been up through the night at all. I knew what I would find when I went to his bed. Jonah was cold and lifeless. The procedure we had depended on to help our baby live and thrive had somehow killed him.

I called 911 and my husband carried Jonah down to perform cpr, but there was nothing to be done. My beautiful, perfect, angel Jonah was gone. The paramedics came and confirmed what we already knew. I held my sweet boy and sang to him and prayed and screamed and cried and stroked and kissed him until it was time for the coroner to take him away.

This was the worst day of my life. If only it had been just a nightmare, but it was true. The day he died was the worst, the day we buried him the hardest, and the day after his funeral the saddest. Now we are beginning the process of learning to live without our wonderful Jonah. I will never be the same. This is pain.