Kittymomma's Adventures

The 12-week appointment, which included the nuchal translucency ultrasound, was this morning. I was feeling much better after making it to 12 weeks. I even found myself looking forward to this appointment. But, of course, last night, I became terrified the baby wouldn’t be alive when we did the ultrasound.

My fears were unfounded. Baby is very much alive. He/she has a heart rate of 157. (Since we don’t know gender, I am going to refer to the baby as “they”, because I don’t like saying “it” or typing “he/she” over and over.) They are measuring perfectly for their due date, moving around and doing everything they are supposed to do.

The NT scan was perfect. It ruled out 90% of chromosomal conditions, such as Down Syndrome and the Trisomys. It doesn’t mean that there is no chance this child will be born with one of those, but it is very unlikely. The skull has closed over the brain. There is fluid in the stomach and bladder, which means they are swallowing and making urine. We can’t tell much about the state of the heart until the baby is bigger, but it is a great heart rate at this point.

AND, this week the tech thought it looked like a girl! Last week, the nurse and I thought we saw boy parts. It is still far from conclusive, but it seems like the Internet was right when it said that boy and girl parts still look a lot alike at this point. The tech said she thinks there is maybe an 80% chance it is a girl. It will be interesting to see. I’m not buying any pink yet. Although I have a slight preference for girl, I am honestly fine either way. My expectations have drastically lowered. I just want this baby to stay alive and not have any serious health problems.

We did the MaterniT21 today, which will further test for genetic problems and conclusively tell us the gender. We should get the results in 1 1/2 – 2 weeks. I have heard of problems with false girl results with these tests, but the nurse at my doctor’s office assured me that is not the case with this test. I wonder if I will be able to fully believe in the gender until we see it on the 20-week sono, though. That’s what I’m used to.

So, it seems like we have survived the flu and baby is doing wonderfully! Thank you for all of your prayers and good wishes.

It’s been two months since I last managed to write on this here blog. I don’t understand how the holidays manage to consume all of our time, even when we try to scale back on them as we did this year.

And that is the main reason I have slacked off. Sheer busyness. But it is a New Year and it’s time to get back at it.

The holidays were not as bad as I feared. But I am relieved they are over and we have a breather before we face Lucy’s birthday, Valentine’s Day, Baby Bean’s due date, and Easter. I had one good cry Christmas morning, but it did not seem all that different pain-wise from most other days.

Let’s not even talk about May. I wish I could just wipe it off the calendar this year. J

I have lots of news. The first and most important piece – I am pregnant! We are safely out of the first trimester (just barely). I am due July 28, so I’m not expecting this kid before August 7. The first two came 10 days after their due dates. It was a scary 12 weeks at times, but we have made it through. I’ve already had four ultrasounds, because I kept getting frightened that the baby had died. Luckily, my new doctor’s office is very understanding of my situation and always squeezes me in for a quick check to ease my mind. I think this baby was part of the reason Christmas, Thanksgiving, and New Year’s were as bearable as they were.

We are so happy. We finally got to tell Max and he is so happy and not QUITE as fixated on the baby being a girl this time, which is a relief, since he/she was looking boy-like at the last ultrasound last week. But it is still way too early to be sure. However, I’m pretty sure I can feel the baby moving! It’s so much earlier this time, but this ain’t my first rodeo, so I am fairly certain I am feeling the baby. I stretched out on the couch the other night and just focused on him or her wriggling around and smiled. I don’t think I will ever take anything to do with pregnancy or babies for granted again. Neither pregnancy nor babies are easy or fun all the time. But I have a new appreciation for it after experiencing so much fear that I would never get to experience it again.

We have the nuchal translucency (test for Down syndrome) ultrasound this Friday and I think we are going to do the genetic blood testing that can also reveal gender. Insurance will cover it this time, since I will be 35 when this one is born. Now that we have crossed the first hurdle of making it through the first trimester, we have to make sure this little one is healthy. Of course, the main worry is cardiomyopathy, but please send prayers and good thoughts that this little one will look perfect in every way this Friday.

Besides being pregnant, I am now the Secretary of the SoCo Women’s Chorus, an ambassador for the Children’s Cardiomyopathy Foundation, and I have a new potential new project in the works with the American Heart office in Austin. But I am determined to still make time for this blog. I promised Lucy and myself that I would keep trying to write. I am not going to give up on that, no matter how busy I get or how long the hiatuses are.

In other news, Heart Month is coming up! February is both Heart Month and Lucy’s birthday month. Right now, my tentative plan is to share pediatric heart stories (particularly cardiomyopathy, but any pediatric heart condition is eligible) on my blog all month. I am also planning to showcase different pediatric heart conditions on the Team Lucy Facebook and Twitter accounts all during the month of February. If you haven’t “liked” or followed us yet, please do!

http://facebook.com/GoTeamLucy

http://twitter.com/goteamlucy

Please submit your stories and share this post with anyone you know who has a story to share. We desperately need to raise awareness of the plight of children suffering from pediatric heart conditions. I also might share transplant facts, so if you have a transplant story, I would love to share that as well!

As far as Lucy’s birthday, I am still working on how to properly observe it. For now, if you are a person who would have gotten a present for Lucy if she were still here or just someone who cares and wants to help, please consider donating to Children’s Cardiomyopathy Foundation. We would love for them to get a lot of donations in honor of Lucy’s 2^nd birthday.

This is one of those housekeeping posts that probably isn’t the most scintillating to read. It will be interesting to see where the New Year takes me in life, grief, and writing. It was very hard to start a new year without Lucy. It felt so wrong. I have felt my pain change. It is being integrated into my life instead of coming at me in big rushes. I have to accept that life is going to have hurt in the background and still sometimes in the foreground and that that is the price of loving Lucy. Of loving anyone. It’s the risk we all take, whether we know it or ever have to fully pay the price or not.

It is harder to figure out what to say. I find myself not wanting to be as open about it as I was. I’ve found out who my friends are. I am lucky in that most of my friends did turn out to be true friends, with one noteworthy exception that I still feel dumbfounded and blindsided about. But I need to start turning to other parents who have been through it as well. The other day, several of us who have lost children to cardiomyopathy were sharing stories on the Children’s Cardiomyopathy Foundation Facebook page and it felt so good to share with others who had been through the same thing. Not just losing a child, but to the same disease. I hate that anyone has lost their child, but they get it. It eased some of my guilt about Lucy to hear their stories.

So, my journey through grief will still be chronicled here. But I hope to include more about my everyday life and how we are going to shape a future with all three of our children, where we are somehow still one family and not two separate versions. It will be hard, but I know it can be done.

Dear Max,

As we lay snuggling in bed this morning before starting our day, you said, “I love you. I will never, ever stop loving you.”

You have been saying that a lot recently. You started after I told you once that I would never, ever stop loving you, no matter what.

We have finally gotten to that point. The one where you listen and take in what we say. And you reflect it back to us in ways that are sublime (like the above), hilarious (asking me why something “soaks” after I complain about something “sucking”), and eye-opening.

You also reflect our love back to us. We can tell you are trying to learn and do the right things and please us.  You show empathy and caring. You try to comfort us when we are sad and even when we aren’t. One of your favorite phrases right now is, “It’s okay”. You say it in such a soft, sweet voice. Again, I told you one night that everything is okay and that it is always okay and you seem to have really latched on to that idea.

I also love the way you say, “I love you”. I wish I could capture it on video. But it is too spontaneous and it wouldn’t be the same if I asked you to do it while I recorded. I pray I will never forget how “I love you” sounded when you were four.

One of my favorite rituals right now occurs when I pick you up from school. As I walk from the parking lot, I sometimes see you already perched at the fence looking for me. Even if you aren’t already looking, the minute you see me, a huge smile breaks over your face and you run towards me saying, “Mommy!” or “My Mommy!” One time, you yelled, “That’s my Mommy!” so loudly that every parent around you turned and smiled and laughed.

I wondered when the little boy’s adoration of his Mommy would kick in. I wondered if I deserved it. Whether I do or not, you seem to think I do and I soak it up gratefully. I expect you to ask me to marry you any day now. J

You are an amazing little boy. If anything, you are more amazing than ever after the year you have just navigated. You have gone through things no little boy should ever have to endure and I am so sorry I could not protect you from them.

You experienced your parents suddenly disappearing for three weeks while your baby sister was in the hospital. You experienced your baby sister dying in your home. You experienced grief and fear from these events. You experienced your parents’ grief. You experienced the loss of a potential sibling last summer. You experienced a tonsillectomy/adenoidectomy a month ago. And now you have to grapple with new food allergies.

There is so much good, little man, but sometimes it is hard to see it for the bad. You help me see it. I might have lost sight of it entirely if it hadn’t been for you. No matter how sad or stressed out I feel, I smile when I see you smile at the end of the school day.

I feel like life has been one crisis (some good, some bad) after another the past few years. Sometimes I feel like I destroyed your perfect, simple life when I decided I wanted another child and that child turned out to be sick. Even though I know you loved Lucy very much and I wouldn’t trade my time with her for anything, I know we are all different after what we have experienced. I just have to keep hoping we will emerge stronger, better people.

I worry sometimes that your whole childhood will always be about another child. It seems like we are always trying to have another baby or trying to keep the baby we have alive. I worry that that will make you feel like you aren’t enough. I want you to know you are enough. You are more than enough. You are sweet and smart and caring. You are my firstborn. You make me proud every single day, just by being you.

You made me proud when you went over to a classmate who hurt herself during pickup the other day and said, “That’s ok” in a sweet, kind voice.

You made me proud when you went over to the babysitter when she was making your dinner last night and reminded her to make sure there was no “allergy stuff” in your dinner, just like I asked you to do.

You made me proud when you saw the picture of the “L” you made on the playroom floor out of blocks the day your sister died, ran to the playroom, made another “L” on the living room floor out of the same blocks, and said, “I made a ‘L’ for Lucy!” with such a proud look on your face.

You make me proud with the work you do in play therapy. One day you said to me, “Lucy won’t be here for the first Thanksgiving this year. I wish she didn’t die every day.” I was so proud of you for expressing your feelings and so grateful you felt comfortable expressing them to me.

You are an amazing, strong little boy. You have survived so much and you have learned wisdom and courage from it. I’m so sorry you lost the little sister and playmate I wanted you to have so desperately. I know it will never be the same, because we will never have Lucy again and any siblings you do get will be much younger. But I hope it will be good. We do have good now. The good did not all die with Lucy. We are still a family and we always will be. Lucy will always be part of our family. And I hope our family will grow. You are such a good big brother and you deserve a sibling to grow up with.

I really wanted to give you and Lucy an idyllic, “normal” childhood. Even though I had a wonderful childhood in many ways, it wasn’t what you would call “normal” (if “normal” even exists). I’m not sure why this mattered so much to me, since I know that “normal” can look like many different things and “happy”, which is more important, can’t be manufactured or imposed by outward circumstances. I lucked out in finding a wonderful man to be my husband and your father. We bought a beautiful house in an idyllic, suburban neighborhood. The schools are awesome. We have pets. You have toys and nice clothes and good food to eat. We do our very best to be good parents. And tragedy found us anyway. You have had to deal with something I never had to deal with. I would have been devastated if I had lost one of my siblings. I still would be. I don’t know what it’s like for you. I can only imagine.

I guess it just goes to show that you can’t control things. I don’t know how many times I am going to have to learn that lesson. You have to determine to be happy with what you’ve got and the hand you’re dealt. With what’s right for you. I have learned many times that “normal” is overrated and that no one is as picture perfect as they seem. And yet, I still remember thinking after our photo shoot in the rain last year, “I finally have it. I finally have what everyone else has. I have a normal, beautiful family. I gave my kids ‘normal’.” I dared to let myself believe that everything might be all right, for the first time in my life. And then your sister got sick.

The cold, hard truth is that I went after those surface, superficial things. I worried about how things looked and what other people thought. I tried to do what I was “supposed” to do as a mom. I did try to keep sight of the things I know are right. But I wish I hadn’t been so concerned with those other things while your sister was alive. It’s okay if they matter, but I let them matter too much. I have rededicated myself to prizing the people in my life above achievements and outward appearances. I believe I am a better mother to you now. And I hope I can pass these lessons on to you, so you don’t have to learn them the hard way, like I did. Don’t get me wrong. I don’t think your sister’s death had anything to do with my failings. But I owe it to myself, your dad, you, and her, to learn and grow from the experience.

This letter is becoming more about me than you. But I guess these letters are a way of helping you to know me, as well as recording as much as I can about you at each stage, so you and I will have that in the future.

I love you, Maxie-moo. I will never, ever stop loving you, no matter what. Merry Christmas.

Love, Mama

Dear Lucy,

It has been almost seven months since I last held you. We just spent our first Halloween and Thanksgiving without you.

Halloween was much more difficult than I expected. I knew it would be hard. The one Halloween I spent with you was so special. I didn’t really care for Halloween before I had children. But I was so excited after you and Max were born. I spent hours picking the perfect ladybug costume for you last year. And then I turned around and bought a strawberry costume at Old Navy! I almost bought every baby girl Halloween costume at Old Navy, but I exercised SOME restraint. I found occasion for you to wear both costumes, but the ladybug costume was your official costume for the big day. My bumblebee costume was a happy coincidence. I didn’t mean to dress us both as insects, but it worked out well.

Halloween isn’t thought of as a sentimental holiday. I thought Christmas would be the worst. But Halloween is the most child-centered. It’s a holiday specifically for children. And Halloween was the last holiday we had before we found out you were so ill. You were hospitalized within days of your first Halloween.

I thought I was doing fine until the afternoon of Halloween. Suddenly, while I was on the treadmill, I experienced an intense desire to stop Halloween. I couldn’t let it happen without you. I cried. But I knew I had no choice. I put on my devil horns and tail (Max insisted on a costume and I couldn‘t bring myself to wear the bumblebee costume again yet.) and went trick-or-treating with Max and Chris. It was very hard, but I made it through several hours for Max’s sake. After we got home, I went up to your closet, got out the Pebbles costume I bought for your second Halloween, the Halloween pajamas you wore last year, and your strawberry costume, held them, and cried.

After that, I was apprehensive for Thanksgiving. But it wasn’t as bad as I thought it would be. I had a moment that morning of not wanting to go downstairs. Chris and Max were already down there and I wanted to pretend you were with them. Again, I didn’t want the holiday to happen without you. But it had to.

Now, we move on to Christmas. I have always loved Christmas so. Surprisingly, the Christmas decorations are not depressing me. It wasn’t depressing to get out our tree and begin to decorate. The first sight of Halloween decorations hurt me, but the Christmas ones have not yet. I did feel sadness at going to the Driskill tree without you. I wish we had taken you while we had the chance. I felt a pang at taking Max to see Santa without you. I wish we had done that while we had the chance. I know those things aren’t what matters. But I wish you had the chance to do those things. I’m not sure why we didn’t. I guess we were worried about germs, since you were sick. And babies are often scared of Santa and Max definitely was last year.

I think part of the reason Christmas isn’t hitting as hard as I thought is that Christmas was sad for me last year. I tried so hard to be happy and excited and give you and Max a good Christmas. I think we did and I have good memories from it. But I was so sad that you were sick. We were told a week before Christmas last year that they didn’t think you would get better after all. They thought it would be a chronic condition. I was naïve as to what that meant at that time. The doctors put a positive spin on it and pediatric cardiomyopathy CAN be very variable. But I felt so foolish later for being so sad over a chronic condition.

I can’t know what the day will be like until it gets here. I just know that I will miss you very much, as I do every day. I know I have endured a sad Christmas, haunted by the knowledge I might lose one of my children. One of my memories from last Christmas is of sitting on our front step one night a few days before Christmas and crying, begging God not to take you from me. Part of me felt like I was being over-dramatic at the time. I thought I didn’t really have to worry about you possibly dying for years. But even that was too soon. I don’t know what to make of the fact that He did take you, except that I have come to believe that God doesn’t take people. It doesn’t seem right, but it was your time last May. I don’t think you wanted to leave us or that God chose to take you. For whatever reason, that was your fate. A biological process had been set in motion that couldn’t be stopped. And, if there is a God, He is saddened for us and does what He can to comfort us when those things happen. He doesn’t cause them and He doesn’t allow or stop them.

I got off on a tangent there. But I have endured a sad Christmas and I know I can do it again, even the unfixable sadness of not having you here. Hopefully, like Thanksgiving, it will be easier than I think. J

Another reason I believe Christmas isn’t depressing me so much is that it really is providing light in the darkness. It is the end of the year, the darkest time of the year. It is the end of the most intense year of my life. When I had the D&C last August, I was seriously ready for 2013 to be over. Recently, I have had mixed feelings about letting it go. I don’t want to leave the year in which I last held you. This year has been so hard, but it has taught me so much.

Last week, as I drove around and saw the Christmas lights going up, I remembered that Christmas is intended to provide light in the darkness. I know it is not that way for everyone. But the pagan festivals that lent some of their traditions to Christmas, if I remember correctly, were all about providing light and warmth and community at the darkest time of the year. They were about reminding ourselves that the light would come back. Christmas seems to be about that in the religious and secular senses as well, even today. We think about what matters. We give to others. We gather together. We fill the long nights with light and cheer. It’s not perfect. Not everyone likes it. It doesn’t make everyone feel better. But this year, I hope that this Christmas really does symbolize that the light will come back and that a new, happier year is dawning for our family and everyone else’s.

It does feel wrong somehow to call 2013 unhappy, though. How can a year in which we had you be unhappy? Life is confusing, kiddo. J

I miss you, baby. I keep trying to imagine what you would be like now. I hope you are safe and happy and at peace. Merry Christmas. Tell Santa to bring your brother a Chasin’Cheeky game. He wants it bad. I love you so much.

Love, Mama

I’ve been neglecting this blog for awhile. First, it was because of the Team Lucy events. Then, the Faure Chorus performing at the JFK Memorial in Dallas. Then, Max had a tonsillectomy/adenoidectomy two and a half weeks ago. The recovery for that involved a lot of me sitting next to him offering him sips of fluids every few minutes. But he is doing much better and I am hopeful this will do much to improve his quality of life.

We did have a somewhat upsetting development yesterday. Max ate Sour Patch Kids and several cashews. Afterwards, he and Chris started to head upstairs to get the Christmas tree. Max promptly vomited several times and I discovered hives on his face while I was cleaning him up. He usually reacts that way only to eggs. It looks like we might have a tree nut allergy on our hands. I am not too happy about that. I thought we might be clear of all the crazy medical stuff after the tonsillectomy. I have my fingers crossed that our cat Angus’s follow-up Echo will be normal this month and he can go off the Atenolol. If we had to lose our daughter, I wanted to be free of abnormal stress and sickness. So, I am pretty stressed and depressed about this. I know allergies can be no big deal. Max has a mild egg allergy that has been very easy to manage and deal with. But nut allergies completely freak me out.

I have so much I want to catch you all up on. I hope I will get back on my writing schedule now that Max is back in school and things have settled down a bit. In the meantime, I do have a Christmas favor to ask. We are running a new Booster campaign with Team Lucy shirts in baby and toddler sizes. We even have a onesie that is completely adorable. All proceeds go to Children’s Cardiomyopathy Foundation. Our previous fundraisers were for American Heart. While American Heart is at the forefront of improving American’s overall heart health, CCF is the ONLY organization devoted to raising awareness of and finding better treatments and a cure for pediatric cardiomyopathy. CCF was started by Lisa Yue, a mother who lost two sons to pediatric cardiomyopathy. Here is a link for more information about the organization and pediatric cardiomyopathy in general: http://www.childrenscardiomyopathy.org/.

These shirts are adorable, they are great quality, and the money goes to a wonderful cause. This is our first Christmas without Lucy and we would love to honor her by raising a lot of money for CCF. We need to sell at least 20 shirts by the end of the campaign or everyone’s money will be refunded and CCF will not get any of the proceeds. We have sold two so far. The campaign ends in 10 days. Here is the link: https://www.booster.com/teamlucyjrshirt. Please help us honor Lucy and give hope to kids with cardiomyopathy this Christmas. Thank you. J

Hey, lovely readers!

Some of you may remember my post “Letter to Lucy in Heaven”. I am proud to announce that it has been published on “Mamalode” magazine’s website for the November theme “Breathe”.

Letter to Lucy in Heaven

Please check it out! This is my first time in a professional publication and I am very excited. 🙂 If you have never checked out “Mamalode” magazine, their website, or their Facebook page, you are in for a treat. Some of my favorite writers are there and I am honored to be included among them now.

I am having trouble getting pregnant. I guess.

I have debated whether to write about this. I know it seems like I have no trouble sharing personal issues. I probably overshare sometimes. But this seems much more personal somehow. Probably it’s the old stigma attached to discussing “female” issues.

Plus, if I do get pregnant again, I’m not sure when I want to tell people. It would seem impossible not to tell people if we have another loss, but I don’t want to be forced to again by the fact that they already know. And it seems like, if I share that I’m having trouble getting pregnant, y’all would expect me to share when it happens. Even if I don’t, it will be pretty obvious if I suddenly stop yakking about trying to get pregnant.

What is so wrong with sharing that you’re having trouble? That you have had a loss? There’s nothing shameful in those issues. Most people go through them at some point. The problem is that when you share you open yourself up to judgment, opinions, advice, and intrusive questions. I have been lucky in that most people have been extraordinarily respectful and kind.

So, since this sucks and it’s hard and sharing usually helps, here goes nothing.

We have tried twice to get pregnant since the D&C and struck out twice. We have never, ever had trouble getting pregnant before. Three kids – homerun the first time every time. So, of course, we would have trouble now. Because life just hasn’t been hard enough this year.

I know it can be normal to take up to six months for a normal, healthy couple to get pregnant. I know my body endured trauma with the pregnancy and the D&C. But I know my body, I’ve been tracking my cycle, and I know things aren’t right.

It would be nice if my doctor would listen to me and believe me. But she doesn’t, so I am now searching for a new doctor on top of everything else.

The problem seems to be that my cycles are only 23 days long since the D&C. Not only that, but my period is coming barely a week after I ovulate. That is not enough time for the little egg to get in there and start growing if it’s been fertilized.

The first time it happened after we tried was really traumatic. I thought it was implantation bleeding at first, like when I got pregnant with Lucy. But it started to look a lot like the beginning of my pregnancy with Baby Bean. It didn’t even occur to me that I might not be pregnant at all, because that had never happened. So, I spent three days certain that I was starting another bad pregnancy and feeling cursed. It was so heartbreaking and traumatic that I was actually relieved when I realized it was my period.

The next month, I once again thought it was implantation bleeding. But then I remembered the previous month and my heart sank. Sure enough, it followed the exact same pattern, except that there were FOUR days of tortuous spotting before it finally became apparent it was my period.

Despite the fact that this has happened for three cycles now, my doc still thinks the problem is that my lining hasn’t recovered from the D&C. At least, she gave me estrogen gel. Hopefully, that will help. But I’m afraid my worst nightmare is coming true. I have a problem that probably has an easy fix, but my doctor is going to force me to suffer through months of this heartbreak before she lets me pop a damn pill that will fix it.

This weekend marks the usual time in my cycle when the tortuous spotting starts and my body plays cat and mouse with my emotions. Is my period early again or am I starting a bad pregnancy?

I just hope and pray that, even if I am not pregnant this month, my cycle will be back to normal. I went to acupuncture. I’m using my estrogen gel. I don’t think a normal cycle is too much to ask.

In the meantime, my temperature was very slightly down this morning. I’m cranky and having mood swings. I am terrified it’s PMS and my hopes are about to be dashed again. Sunday is the dreaded day 24.

All I can do is pray for strength and hope our plans for this weekend will distract me from whatever is coming in the next few days. Please send thoughts/prayers/good vibes that, even if I am not pregnant, my cycle will at least go back to normal.

Today is the fifth anniversary of the day Chris and I found out we were going to be parents.

A year ago today, it also became our last day of normal. November 4, 2012, was the last day before an X-ray showed Lucy’s heart was enlarged. She was diagnosed with dilated cardiomyopathy by the end of that day.

A year ago today, we took the kids out for frozen yogurt to celebrate the anniversary of those two pink lines.

We had no idea our little girl was so sick. We had no idea how close to disaster we were. We had no idea that she would be dead in six months or that we would have lost her sooner if the doctor hadn’t listened to his gut and kept ordering tests instead of sending us home.

After the yogurt shop, we went to the grocery store. It was your typical Sunday afternoon at the store. It was incredibly crowded. I had an incredibly long list. I was going to cook EVERY NIGHT that week.

All of that food spoiled in the fridge during Lucy’s ten-day hospital stay.

The kids were tired and cranky. I remember Chris carrying Lucy in the Ergo. I remember rushing through the aisles trying to get everything and get out of there as fast as I could. I was so stressed.

Ha.

That night I was inexplicably worried about Lucy. I stood in the hallway outside of her room holding her. The lights were off in her room and I thought I saw a dark figure standing in her room. A year later, it seems it must have been my shadow, but it’s hard not to believe it was a sign of some sort considering the events of the next day.

We had no idea Lucy and I would be sleeping in a hospital 24 hours later. We had no idea that would be our family’s last night together for 10 days. We had no idea, as we worriedly noted her quick breaths in her crib that night, how quickly we were getting to the last one.

I volunteered at the Fall Festival at Max’s school today. I signed up during the confidence high that was planning the Ladybug Jam, but I started to regret it a bit as we got closer to the day. I am exhausted from the Heart Walk and Ladybug Jam. I am distressed from losing a dear friend this week who evidently didn’t regard our friendship as highly as I did. I am experiencing a resurgence of strong grief for Lucy. My hormones are making my anxiety spike. It has just been a hard, hard week.

But I went. First thing that happened was a pregnant woman sat at the booth next to me. Sigh.

Then another one looked like she was going to sit at my booth with me. For once, God seemed to spare me and she headed to the one on the other side.

The woman who joined me was perfectly nice. She wasn’t visibly pregnant. But within five minutes, the inevitable question came up.

“Do you have two kids?”

“I did” slipped out before I thought about phraseology.

She gave me a startled look.

“My daughter died last May.”

I told her not to feel bad, that I get asked that question all the time. And it’s true. I do. The woman who scheduled our flu shots at ARC asked me if there was “another child”. I guess Lucy’s name popped up in our file. Seriously, can’t they put a big “DECEASED” next to her name, so people won’t ask? Why did she think I didn’t mention her myself? Did she think Max was our favorite and we only vaccinate him or something?

A little gallows humor there. It does help at times.

Anyway, the kids came in and were so cute and excited. They were the two and three-year-olds, I think. I started to have fun.

Then, the 18 month-2 year class arrived. They are so darling, but they break my heart. Lucy would be that age now. She might have been in their class if she had been healthy.

I thought about ducking out, but I soldiered through. I was so ready for them to leave, though. I started to feel that numb, shaky feeling in my extremities that I felt when we were interviewed by the transplant team last March and after Lucy died. I felt nauseous and tired. I also felt a desperate desire to pick them up and hug and squeeze them. It kills me that there isn’t someone that age in this world who belongs to me anymore. The first pregnant mom walked over and picked up her little boy in that group and held him close. I thought about how I would never hold and comfort Lucy that way again.

I tried so hard to picture Lucy with them. I tried to picture her walking around and seeing me and running over to hug me. I couldn’t quite see it today. She was turning into a little girl when she died, but I still saw her as a baby, since she couldn’t even crawl, thanks to her vicious disease.

They finally left and Max’s class came in. I was so glad to see him.  I felt so bereft before he got there and it helped. He seemed proud to have me there. He enjoyed the games and didn’t fuss when he had to go back to his room. I was so proud of him.

That is my life. The simple, happy things are hard. Pain is almost always on the heels of happiness. But I think I am glad I went.  

I went back to Little Tesoros (the place where Lucy had physical and occupational therapy) for the first time this morning. I haven’t been there since her last therapy session two days before she died.

I remember driving into that parking lot with my two kids. It was cold then, too. I remember wiping them down with Wet Wipes repeatedly to protect from germs. I remember skirting the smoking section on the way to the door. I remember the white blossoms from the tree out back blanketing the car by the end of the session.

I remember walking up to those glass doors every time and seeing the reflection of me with Max’s hand in mine, Lucy on my left hip. Seeing that reflection made me forget my worries for a moment every time. One of the last times, Max was running next to me laughing.

I went back to Dell Children’s last August. It was the first time since Lucy died. It was a few days before I found out Baby Bean was dead. That’s why I haven’t written about it yet. I have felt drawn there since Lucy died. It feels like home in a strange way. It feels like part of her is there and I can find her somehow. Weirdly enough, I almost look forward to spending the night there for Max’s tonsillectomy. I know it will be traumatic and yet, it will feel like we are all together again. We will be back in the place where we spent so much time with Lucy.

They have a beautiful new Healing Garden. They were building it during Lucy’s time there. You should definitely check it out if you get the chance. 

I wanted to go to Lucy’s old room in the PICU, but I don’t think you can go in there without permission. I did visit the waiting area where we spent a considerable amount of time waiting when she was admitted last February. Those were the last moments our family would really spend together for three weeks. I can feel that very strongly there. Others see an empty, annoying waiting room. But I see treasured, albeit sad, memories there.

I get so close to finding Lucy. She is always here. She just is not dead to me. She is never far from my thoughts. She is constantly by my side. But I can’t touch her. I can’t see her. She is gone forever, yet she is ever present. Sometimes, as I move forward, I will continue to step back, and retrace the steps of my former self, and try to reach her through the veil, if only for just a moment.