Birthday

Happy First Birthday my dear, sweet Jonah. Thank you for coming into our lives. We will never be the same after having you here. I am so sorry for all you went through in your short life, but we could not have possibly loved you more. My beautiful boy, we will always feel the heaviness of your absence and grieve what might have been.

I should be holding you while you try your first bite of cake and enjoy a party in your honor. I wish I could have sung Happy Birthday to you and given you your first birthday gift. I wish you could play with balloons with Melody, Lila, and Isaac, and that we could all take a stroll and enjoy some fresh air together.

Last year this day was one of the best of my life. I have come to accept that my heart and our family will always have a hole in it, but thank you for sharing yourself with our family. If only I could hold you one more time.

Endings and Beginnings

Forgive me ahead of time if this is not cohesive.

Today is the 16th anniversary of Jonathan Larson passing away due to an undiagnosed aortic aneurysm. Although I have never met the Larson family, I feel a special kinship with them. I loved musical theatre and especially the musical Rent before I knew the Jonathan Larson story, but once I heard Jonathan's story I felt a connection as a Marf. Now, losing Jonah the way I have, I feel an even deeper connection with the Larsons. They have been strong supporters of the NMF and careful protectors of Jonathan's legacy. Even though my Jonah was only 7 months old, and certainly didn't pen any Tony award winning musicals, I hope that I can show the world the beauty of his short life, what he meant to his Daddy and me, and help him to leave a legacy of his own.

2011 definitely ended in a whirlwind for our family. Just before Christmas we were surprised and overjoyed to discover we are expecting a new baby! A new beginning. We felt and still feel so blessed by this news and we look forward to welcoming him or her in mid to late August.

Christmas came and we did our best to enjoy it but we began to notice our 2.5 year old son, Isaac was very sick. We had taken him to the prompt care center for his swollen lymph nodes and he had been given antibiotics but whatever plagued him continued to progress. Isaac slept through most of the Christmas fun. Two days after Christmas we were alarmed to notice he was having long gaps between breaths and trouble getting air. I googled the funny movements his chest was making to find out they were called "rib retractions" and that we had an emergency situation.

We took Isaac directly to the ER, expecting an overnight stay at most, with antibiotics and some fluids since he was clearly dehydrated. By that night, after trying several interventions that didn't work, Isaac was sedated and placed on a vent. This was a very dark time for me. It was around 2 in the morning and my husband was at home with the girls. I was very afraid I was losing Isaac before my very eyes. I had sung "Silent Night" at Jonah and Mom's grave just days before on Christmas. Now all I could imagine was another loss, another funeral, another child gone.

Isaac pulled through though. He spent 48 hours on the ventilator and continuously improved during his stay. It was hard for me being away from home and from the girls. It was hard being in the hospital again, and it was hard seeing my little guy so sick, but I made it through too. Isaac and I spent New Year's Eve at the hospital, but we got to come hone for the first day of 2012. Another new beginning.

We are so grateful for the care Isaac received at the Peyton Manning Children's Hospital. He had such attentive nurses and doctors who included me in all aspects of his care. I felt completely in the loop most of the time. Isaac was diagnosed with nothing more than rhinovirus, a common cold. His immune system apparently over responded to the infection and the swelling caused his breathing problems. I'm so glad to have Isaac home.

We were able to see our new baby on ultrasound for the first time on January 17th. Baby had a heart rate of 146 beats per minute and looked exactly like he or she should for that age.

We miss Jonah every day, but we are so thankful for new beginnings.

Although it's a little late, Happy and Blessed New Year to all of you.

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.

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.

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.

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 www.marfmom.com :)

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...

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.