Kittymomma's Adventures

I creep carefully through the dark hallway, assiduously avoiding the squeaky boards. I twist the knob on Max’s bedroom door and  ease it open. It always sticks, especially when the air conditioner is running.

My eyes adjust to the dim light provided by his “Where the Wild Things Are” nightlight. They search out the outline of his body in his Thomas bed; my ears strain to catch his breath.

I hear it. I listen for six or seven breaths, making sure he is ok. I mouth, “I love you” and slowly back out, easing the door shut.

I stand outside his room. I look across the landing to the open door of the room that used to belong to my daughter. Her nightlight shines like her own eternal flame. I envision her lying in the crib, breathing softly, so adorable and alive.

I kiss the tips of my fingers and touch them to my son’s door.

I blow a kiss to my daughter’s door.

I kiss the tips of my fingers and touch them to my belly.

That gesture allows me to feel, for one brief moment, as if I am together with all three of them.

When Lucy was born, the midwife said, “There you have it – the million dollar family.” While I don’t believe in the whole myth of the “perfect family” – 2.75 kids (or whatever the number is), one of each, I guess that is what we had. Two beautiful children. One boy, one girl. The boy first. That’s what people used to strive for.

For a former straight-A, obsessive compulsive person, I am surprisingly realistic when it comes to family composition. I believe perfection lies in the imperfections. I wanted at least three kids. A mixture of boys and girls. I wanted chaos and mess and imbalance. Most of all I just wanted to embrace whatever we had. To find comfort and solace and everything we needed in each other.

I told myself that. And I believed it. But it was only partially true. I was proud of my perfect, “million dollar family”. That was probably part of the reason I wanted a third child so badly. I wanted to have a third baby and not care one whit about the gender. I was so looking forward to that. I just wanted a third child, but I also thought it would be my chance to be zen. Go with the flow. Not stress about wanting a daughter so much for the first twenty weeks.

I’m not perfect. No one is. But I secretly worry all the time that I am worse than everyone else. I am so judgmental and critical sometimes. Especially when I am having anxiety attacks or my hormones are at a high. And I know these judgments and criticisms come from a place of insecurity. They come from me trying to reassure myself that the things I want are ok or that I’m making the right decisions. I don’t know why others have to be wrong for me to be right. But I know it’s because I still often feel bad about myself, not because others are bad.

I admit it. I felt sorry for people who didn’t have what we had. Even though those people had what they wanted and seemed perfectly happy with their choices. I was secretly proud my daughter was so beautiful, even though I know that’s not what matters in life. I know the truth now, though. I really just envied them for knowing what they wanted and seeming so happy with it. Ever since my nervous breakdown in grad school, I have underestimated myself and been afraid of biting off more than I could chew. I have been afraid I couldn’t handle as many kids as I wanted. I was afraid I couldn’t handle having all boys.

When my daughter became sick, part of me was very afraid that it was a punishment for my pride. A punishment for wanting more. When she died, it seemed like I was being punished for every hateful thought I ever had. I know plenty of people are hateful and judgmental sometimes and their kids don’t die. But it’s hard to be logical when you are sad and scared and blaming yourself.

It’s hard not to feel that this is some sort of crazy, cosmic lesson. Exactly two years ago at this time, I was a mother to one son. I was pregnant. It was summer. And I was desperately hoping for a daughter. I feel like my life has been rewound. I am raising one son. I am pregnant. It is summer. And I am desperately hoping for a daughter, even though what I really want more than anything is a healthy child for my husband and me and a healthy sibling for Max.

What I have learned is this – I was right all along. The perfection is in the imperfection. Everyone thinks their family is perfect and that everyone wants to be them. Or they hope that someone envies them. That’s why we post happy family photos on Facebook. We want to share our joy and pride. We want to hear how adorable our kids are and what great parents we are. Most of us know most of the time that we don’t have to diminish someone else’s greatness to enjoy our own.  But we still want that moment of pride. And I guess there is always a tiny hint of superiority in pride.  

After Lucy was diagnosed and especially after she died, it occurred to me that absolutely no one would want to be us anymore. No matter what kind of happy pictures we posted, no matter how many beautiful children we had, no one would want to be us. We have had everyone’s greatest fear realized. Our child died. We will not see or hold her again in this life and there’s not a damn thing we can do about it. There’s a huge effing hole in the middle of our “million dollar family”.

I didn’t want to be the family no one wanted to be. I didn’t want to have the trump card of misfortune. But you know what? I don’t. We didn’t have the worst happen to us. We had the best. We had Lucy. It doesn’t mean this wasn’t horrible and unfair. It doesn’t mean I didn’t want her to live and watch her grow. I miss her every single moment of every single day.

But we learned unforgettable lessons about unconditional love and strength. I learned once and for all that no one has to want to be us, because I want to be us. I wouldn’t want any other family in the world.  And it’s not because my family is better. It’s because my family is mine. The perfection is in the imperfection.

A certain issue has started to weigh on my mind a bit more heavily as the two month anniversary of Lucy’s death approaches. Namely, what to do with her room and her things that are still around the house.

I certainly don’t want to banish all signs of her. In fact, part of me wants to keep everything the way it is forever or at least awhile longer. Her room is still just as she left it except for the addition of a couple of framed photos my friends gave me the day of the funeral. Her coats and rain jacket and pink Easter hat still hang on the hooks by the front door. Her winter hat and hairbrush still lay on the front table. I picked up the hairbrush to look today and there are still tiny wisps of her hair in it.

Her toys are in the living room and playroom. The Jumperoo is still in the living room. The changing table and boxes of diapers are still in the front room.

Some of these things will be needed for the new baby soon enough, so there is really no reason to move them. But I’m really not sure what to do about the rest of it. There is no handbook for this. Surely it would be odd to keep her little jackets on the front hook forever. Will I just feel ready to pack them away some day?

Obviously, we can’t keep her room intact forever, either. Those of you who know me in real life know how hard I worked on that room and how proud of it I was. The idea of disassembling it is heartwrenching. But it has to be done. And there is a bit of a time limit due to the new baby. It will probably be good for us to move forward and disperse her things throughout the house or pack them away for the new baby. To really see what our new reality looks like. But I can’t imagine not being able to go in her room and see all of the items I chose and arranged with such care. I can’t imagine not being able to look in her drawers and her closet and see all of the clothes she wore and will never wear. The Pebbles Halloween costume I bought a year in advance, before I even knew she was sick. I had so many dreams for the little girl who would grow up in that room. It’s like they are still real if the room is still there.

You probably don’t know that my beloved cat Belle also died in that room. I knew she was going to die and the vet let me bring her home. Lucy’s room used to be the guest room and I took Belle in there, so we would have a quiet place to be together during her last hours. I intended on spending every waking and sleeping moment with her until she died. She died less than an hour after I brought her home. She was just waiting to be home.

I am planning to have a priest come out to the house to bless the room and the crib. One of my friends recommended him. He is her priest and he came to her house to bless it a few years ago. The house was remodeled after a car drove into it. She wanted something to sort of cleanse the place of the bad feelings and memories before they moved back in. I do, too. I believe death is a natural part of life, but having two creatures I so dearly love die in the same room has made me leery of it.

We are not planning to put the new baby in Lucy’s room. It will become a guest room again, but with some Lucy touches. The current guest room will either be the new baby’s room or Max’s new room. I am planning on keeping the crib at this point, hence the reason I want it blessed as well. I went back and forth on that and it’s quite likely I could change my mind. But I love that crib. It is a beautiful crib. Chris and I chose it carefully and considered it an investment. We dreamed of all of our children sleeping in it. It sheltered Max for over two years of his life and Lucy for almost an entire year. It had nothing to do with her death, so, odd as it may seem, I want to keep it.

We’ve been in a state of suspended animation in some respects the past two months. Now we have to figure out how to move forward.

Last night, Chris, Max, and I went to the Pflugerville Pfireworks Pfestival. Max loved the fireworks. He held his hands over his ears the whole time, but he laughed and laughed.

It was a wonderful evening until we had to wait in the shuttle line to go home. OMG. Anyone reading this who might ever go to the Pfestival, heed my words. DO NOT USE THEIR SHUTTLE SERVICE. We had to wait an hour and a half, packed in like cattle, for a bus back to our car. And we were some of the lucky ones. I am fortunate to have such a wonderful child. He didn’t start to fuss until about an hour into the wait.

Unfortunately, I became pretty fussy, too. The later it got, the more I started to dread the next day. I was already feeling exhausted and drained and the chances of getting a good night’s sleep were getting dimmer by the minute. I was feeling pretty pessimistic about handling Max’s need for attention the next day.

We finally boarded a bus and made it back to our car. There was a woman sitting in front of us on the bus. She seemed alone, but after the bus stopped and the lights came on, a sleepy baby girl popped up in her arms and started crying and fussing a bit.

That just finished my mood. Every baby girl reminds me of Lucy. I couldn’t stand it. I just stared at her, wishing with all my heart that Lucy was in my arms, sleepy and fussing.

The cemetery was on our way home. That didn’t help much, either. But then, Max fell asleep in the car, which was cute and also a relief. We managed to get him upstairs and in bed without waking him up.

All of this, combined with pregnancy hormones and exhaustion, put me in a pretty good spiral of self-pity. When Chris came to bed, he gently asked me if I was ok. Of course, I wasn’t and I poured out everything. I remember something about “only child hell”. Yes, I was very worked up. And I am a little embarrassed I said or thought that at all. That’s not really the way I feel. At least, not to that extent. But Max and I both miss Lucy and we are still adjusting.

All of this got me thinking about how much I want this baby to be a girl. Or do I?

The fact is, I have a very strong feeling this baby is a boy. Last night, I had myself convinced I’m not ok with that. But I think I am actually afraid of being ok with it.

Last night, I prayed for God to give me some answers about why all this happened. Why I was given the daughter I wanted so badly just to have her taken away. I prayed for Him to help me be a good mom and wife today, no matter how crappy I feel.

And, of course, today has gone fine. I am super-tired, but Max has been quite amenable and easy to deal with.

The best part, though, is that I have felt this strong, passionate love for my baby-to-be today. And I still have a very strong feeling it’s a boy. It’s the first time in a week or so that I have felt very connected to him or her, because I have been pretty busy and tired. It is so nice to feel this love again.

I just can’t seem to let go of my dream of having a daughter. I am afraid that, if this baby is a boy, I might not ever have another daughter and I might not be ok with that. I would be so grateful for the children I have, but I would be angry over Lucy being taken and never being granted another daughter.

I watched “Anne of Green Gables” last weekend for the first time since Lucy died. In fact, I think it was the first time since she was born. I had planned to watch it with her soon and it hurt more than I expected to watch it without her. I tried to get Max interested, but he wanted to watch videos with his Daddy. And I could see my future there if I never had another daughter. There is no guarantee a daughter would be interested in Anne or that a son wouldn’t. But it’s just representative of everything I wanted to share with Lucy and didn’t get the chance. I could see a future surrounded with boys who share none of my interests and I wasn’t too happy about it.

The upshot is that I am having a hard time letting myself be ok with this baby being a boy. Despite the fact that I think I want a boy and I absolutely love this baby no matter what. If I am meant to have another daughter I will. Who knows? Maybe I will get the boy and girl twins I yearn for. Stranger things have happened. They are the most common kind of twins. It seems like my prayers for today were answered, so maybe that one will be as well.

I want some buttered noodles. And popcorn with butter. And a burger. And a big glass of wine. And a Diet Coke. And to watch every schmaltzy episode of “7th Heaven” I can find, especially if it involves a wedding or a baby (preferably both) and cry over the wonderfulness of life.

It’s been a long day. Mama needs some TLC. I wonder where I can send my husband to get the complete boxed set of “7th Heaven”? (Stupid Netflix doesn’t have it.) Would that be the weirdest pregnancy craving ever? Lol.

I finally created a team for the American Heart Walk in Austin on October 19, 2013. Please consider signing up to walk with us if you are in the Austin area and/or donating. No amount is too small. Thank you.

Here is the link to the Team Lucy page. There is a button to join and one to donate. You can also leave a supportive message if you like. We love those. 🙂

https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1047709&lis=1&kntae1047709=9CD9847857F54E598632E8DF6E90AB00&supId=387655432&team=5564674

Yesterday was such a Monday. Pregnancy hormones are hitting me hard. I am so, so determined to not be as cranky with Max during this pregnancy as I was at times during my pregnancy with Lucy. I did quite well yesterday, but I think my exasperation still showed a couple of times.

So, yesterday’s post was negative, negative, negative. That’s life. But just one day of it. I have good day and bad days, but I mostly love my life. In fact, yesterday turned around right after I published my post.

I was sitting with Max waiting for him to go to sleep. He has wanted me with him every night for at least a week. He wants me, not Daddy. The one night Daddy stayed in there, it didn’t go too well. I ended up sending Chris to give Angus his heart meds while I soothed Max to sleep. (Chris rocks at getting Angus to take his heart meds.)

The last few nights, he has really fought sleep. He wants to stay up and play and talk. I just sit there being as boring as possible. Minimal talking. Lots of snuggling. He eventually gives in and I sneak out.

Some nights I have loved doing this for him. Some nights I was determined to do it for his sake. Some nights I spent the whole time praying to God that Max would just go to sleep already, because I was tired and nauseous and really uncomfortable on the floor next to his bed. Between my bad back and my growing belly, sitting next to a toddler bed for long periods of time ranges from uncomfortable to painful. But I think about how he needs to know we are there for him no matter what. He needs to know we will protect him and keep him safe. He needs his sense of security back. So, I sit and smile and refuse to give up until he sleeps.

Last night I was sitting there, quietly smiling at Max, intermittently urging him to go to sleep. Suddenly, he looked up at me with the sweetest smile on his face. I couldn’t believe the words that came out of his mouth.

“You can leave.”

I didn’t believe my ears. “What?” I stupidly blurted.

“You can leave”, with the same beatific smile on his little face. I think he looked a bit proud, too.

“Are you sure?” I was pretty sure this was a trick of some sort.

“Yes.”

“Ok, I love you. Sleep tight.”

I stood up, crossed the room, and stood by the door. I blew him a kiss. I think he said he loved me. I smiled. I might have thanked him. He turned over. I left the room and barely heard a peep from him the rest of the night.

I couldn’t believe it. I was so proud of him. I hardly dared believe that he had simply realized he was safe and secure and didn’t need me to go to sleep anymore. He has only told me to leave once before. I am so proud of him.

This morning, I grew even prouder. Chris told me that Max woke up and said he needed to go potty! And he did! I think it was because it finally clicked in his mind that he gets trains from the prize bucket when he potties. Either way, it is still a breakthrough! He said it and did it!

I wrote about some complicated feelings yesterday. Some of the harsh realities of my situation. I told the truth. I do hate having only one child, mostly because of the way it happened. It definitely has its perks, but this didn’t happen the natural way. We didn’t choose to stop at one. Our other children haven’t grown up leaving us with our youngest at home. My daughter was taken from me. I miss her. I hate the hurt this has caused me, my husband, and my son. I get angry sometimes at the extra burden posed by helping my son through this, while I am suffering through it, too. I worry that we won’t handle it well and he will be marked negatively by this forever.

But I know we can handle this. Max started play therapy at My Healing Place last Friday and I think I’ve already seen a difference in him. I am fully committed to giving him as much extra security and support as I can, no matter how drained it makes me feel at times. This won’t last forever. It will get better. It will be worth it. And some day, I will miss the days that he thought I was so awesome he didn’t want to be separated from me for a moment.

I am so grateful for Max and Chris and the new baby. I am so grateful I had Lucy. I am sad that I will never see my three children together. I will never have a photo of them together. It saddens me that this baby will be born and I will be back to two instead of actually having three. I wonder how I will handle comments about being pregnant with my second or having two from people who don’t know the situation. Because I will be a Momma of three no matter what happens with Lucy or this baby. Nothing will ever change that. And I will have to find a way to share my truth with people without making them feel like an ass for asking. I will never deny Lucy. I will never omit that she was here.

I actually long for twins, because it seems like that would make up for losing Lucy a little bit somehow. I guess I feel like life owes me a baby. I will have three living children that way. I will achieve my dream without having to worry about chickening out of another pregnancy a few years down the road. I have always wanted twins anyway. I even read some old wives’ tales about ways to conceive twins. They probably don’t work, but you never know. J

I go back and forth on it, but I have had some strong feelings that this baby is a boy. I have mixed feelings about that, because I want another daughter so desperately. Not to mention that Max desperately wants another sister and is convinced that the baby is a girl. Of course, I could be wrong. But I was right about Lucy and Max. That’s another reason I wanted twins. I desperately want a daughter and worry that I will always feel a little bit unfulfilled if I don’t have another. But I would also love to have another son. Boys are wonderful.  I would be over the moon if I found out we were having boy and girl twins. It’s a long shot, but you’ve got to ask for what you want, right? You just never know.

If I end up without another daughter, I am back to how things look as opposed to the truth of my life. It shouldn’t matter what people think or see. I know the truth. But I have seen friends post on their Facebook pages about being “proud to be a boy mom”. Would I be a boy mom if I only raise boys to adulthood? Lucy will always be my daughter, no matter what.  Again, we come back to lying by omission (which I won’t do) or making people feel awkward if they comment on my having boys and I have to set them straight. I won’t properly belong in either club. I will not be a boy mom, because I had a beautiful, amazing daughter. She was real. But she’s not here.

I know I am borrowing trouble here. These situations probably won’t come up that often. And we don’t need clubs. We are all mothers. But I can’t pretend I don’t think about it. I was proud of having a daughter and very proud of my actual daughter. I can’t pretend I don’t miss showing her off. I want all of my beautiful family to be visible to the world. Just like everyone else.

I have worked through and processed these feelings since I found out I was pregnant. I know I can handle whatever comes. Whatever we have, boy or girl, twins or singleton, everything will be ok. It already is ok.

I can do this. I will not worry about breaking down. I am strong and I know how to take care of myself and everyone else. And I am so glad I have all of you with me, rooting for me and my family.

My husband thought I buried the lead before, so here’s another attempt. 😉

While sitting in the car with Max outside Kerbey Lane today, a line from “Hey Jude” jumped out at me. It seems to describe our lives since Lucy was diagnosed. It definitely describes our big news: “Take a sad song and make it better”.

We’re making it better with a new addition to our family! Farmer Baby #3 will be joining us next spring!!

Was that better, honey? Love you.

Many surprising emotions have attended my journey of grieving my daughter. I have written before about the fact that the experience is simply bizarre. That is still the best word to describe it. But there are many distinct emotions I have catalogued within that “bizarre” umbrella.

I am acquainted with a mother whose little girl was diagnosed with a brain tumor last Christmas. She is hanging in there, but it has been a very tough road for all of them. The future is very uncertain. I see updates on Facebook from time to time and my heart sinks when I see that she is not doing well. Of course, I am delighted when I find out she has improved.

However, I have also noticed that I often feel jealous when I see these updates. JEALOUS??? That is one emotion I never, ever felt when reading about sick children before. But that is how I feel now. No matter how sick their daughter is, she is still alive. She seems to have hope. They are still in there fighting for her. They get to be with her. I am so glad Lucy is no longer sick and struggling, but I would give anything to still have a chance to fight for her. I wanted so much for her to get a new heart and feel better.

Another surprising emotion is boredom. I do not want to offend anyone who has only one child. But I hate having only one. Believe me, I know how very lucky I am to have Max. I am so grateful for him. I love him so much. At times, when things were at their craziest with two, I did sometimes look back wistfully to when it was just him. I knew it was hard for me, but that seemed crazy after I knew what two was like.

 I know I would be blessed to only ever have Max, but I have always wanted a big family. I had two close together, so they would have a playmate close in age. Now that we are back to one and he has gone through the trauma of separation from us during hospital stays and the actual death of his sister, he is stuck to me like glue. I am trying to embrace that and be strong and be there for him. But it is so hard to be his sole emotional support and playmate. I am a 34-year-old woman. I don’t like to play trains and Legos. I can’t do it all day. I just get SO BORED. And frustrated. I feel so angry that my daughter was taken from us, let alone right when she was getting big enough to finally play with her brother.

We have playdates, he still wants me to play. We go out, he still wants me to play with him. He will watch TV or play on his own sometimes. But he needs me so much. And I want to be there for him, but it is just so overwhelming sometimes to be his only companion all day.

This post has taken on a much more negative tone than I expected. I planned it out before I had the last few frustrating hours with Max. So, here is another emotion that is not surprising considering another aspect of our current circumstances – joy. Because Farmer baby 3 will be joining us next spring! There is, of course, a mixture of joy and sadness in my feelings concerning this pregnancy. But there is absolutely no doubt when it comes to the baby him/herself. We are already in love with him/her and absolutely cannot wait to meet them.

I stepped into the shower in the hospital bathroom and washed the day off of me. I had a rare moment alone where it seemed unlikely anyone would barge in unless it was an emergency. The bathroom sported a swinging door, but Chris figured out a way to keep it shut during showers early on.

I can’t remember exactly what point this was in Lucy’s stay in Dallas. But it wasn’t anywhere close to the beginning or end. I let the feelings of frustration and fear overwhelm me and I cried. Tears rained down my face with the water from the shower. I refused to be angry. In fact, I apologized profusely to God for all of the terrible, blasphemous things I had shout-whispered at him in the bathroom in the PICU at Dell. I truly meant my apology, but part of me was also afraid that Lucy had grown worse because God was punishing me.

I prayed. I begged. I begged for Lucy to get better. I begged for her to be stable without transplant. I begged for her to get a transplant if she needed one. I begged for strength to bear whatever I was going to have to bear. And I begged God for forgiveness. The one thing I wanted was for her to have a chance at life and for our family to have what it took to get her there. That’s what I had prayed for everyday in the chapel there. And that’s what I begged for in that shower. I literally got down on my knees in that shower with the water pouring over me and cried and prayed and begged.

I’m not sure how long it took, but eventually it seemed that a miracle happened. A doctor came to us some days later and told us exactly the opposite of what we had heard from the other doctors. She didn’t think Lucy’s vtach had the potential to be dangerous. She thought it seemed normal. She didn’t even think it needed to be treated medically.

By this point, Chris and I were so shell-shocked, we were afraid to believe it. We barely let ourselves be happy about it. We were too accustomed to stunning reversals at this point.

We were allowed to take her home a few days later. And she died almost exactly two months later.

It might have been the vtach. Her heart might have just worsened too quickly for us to catch it. There’s no way to know.

I don’t understand why my prayer was answered in this way. She died three days after my birthday and I remember I used my birthday wish to wish she would get well. I figured I might as well take a shot. And that weekend I just started hoping she would get a new heart on Status 2, even though that is rare. I was ready to trade in our problems for a set of new ones. I just wanted so much for her to feel better.

 All I can come up with is that those two months of normalcy were the answer to my prayer. Maybe Lucy’s early death was inevitable and God gave us those two months as a parting gift. One of my prayers had also been for our family to have a chance to be together in our home for awhile before transplant temporarily uprooted our lives. We were so worried she would never leave the hospital or she would be listed too high up to go back to Austin. We didn’t know if we would ever be together in our home again. But we got that chance. She did not live and die in the hospital. And now we just have to find a way to live with the “what-ifs”.

Tonight I thought about how much lazier I was about my eating when I was pregnant with her. I didn’t try nearly as hard to be healthy as I did with Max. It probably had nothing to do with her heart condition, but I feel so guilty. Chris and Max were sitting on the couch playing games on his IPhone and I was lying down behind them. All of a sudden, I could just picture Lucy in the room with us. It was as if she had lived and been healthy. She was toddling and crawling. Getting into things and smiling mischievously at us when we told her to stop. Laughing. Behaving like any 16-month-old. It was so clear. I have never been able to picture her healthy so clearly. It was one of the most beautiful things I’ve ever seen. I wish so much it was real.