Holiday Letter to Max

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

Holiday Letter to Lucy

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


Catching Up

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:

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: Please help us honor Lucy and give hope to kids with cardiomyopathy this Christmas. Thank you. J

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