Monday, October 4, 2010

Sad, lost, grateful

Everyone is asking how I am doing. I don't know how to answer, or how to function, really. Today, I saw a woman I used to work with, years ago, who had retired from working as a unit clerk on the pediatric unit where I used to work. She looked 20 years younger than I remember her looking; retirement is good for her, and I asked what she has been doing to keep busy. She says she can't sit home doing nothing, so she is a foster grandparent, and right on cue, a tiny boy came in and was told to say hi to "Grandma."

Then she asked me if I am still working on pedi. I didn't know how to answer; I don't work there anymore, haven't in a few years. So much has changed, so what do I share? Within a couple of minutes, I blurted out that I had had a baby, with "special needs," and we just lost her 2 weeks ago, and my eyes welled up with tears and I couldn't add anything else. She didn't know what to do, and I suppose we weren't anywhere near close enough for that sort of sharing, and I ordered my son's sandwich and moved on. It wasn't the first time I've done that, shared my deepest part of my heart in the past couple of weeks with someone who was just wrong. I realized that I've read this sort of thing on other blogs, where girls have lost their babies. I just don't remember anyone saying what was the final solution? I am torn, because I don't want to share my broken heart like that with someone who isn't even close to me, but I also feel that not sharing about her is somehow denying that she existed, that she pervades every bit of my consciousness. I don't believe an hour goes by when I am awake that I haven't thought of her at least a dozen times.

I had to go back to work on Tuesday after the funeral on Friday and cremation on Saturday. I wanted to hide in my office and not see anyone all day, but nothing is like that. I realized pretty quickly that people know. Some people I probably have never even met, know. Sometimes it is a sweet blessing that lets me know. One woman on my old floor came to me, hugged me, and just said over and over, "God be with you." Other times, there is an awkwardness, because I'm asked how I am doing, and we all know there is no good answer to that, so I mumble something, smile, thank them for asking, and wish I had a lock on my door and a mail slot, and a fax and printer on my desk.

In my work situation, mostly I have chosen to say nothing at all during conversations with parents who I know already know of my little girl, but the visits are not about me. They are about THEIR child and their medical needs and their worries about upcoming surgeries. So I spend a lot of time at work and other places, pretending that nothing at all has changed in my world, and I’m just a nurse going on with my job. And wishing I could be invisible, or that I could even more, just stay home with my family, holding them when they cry. Not just checking texts that beg me to call so they can talk.

I had a meeting to attend later in the week, and a couple of hours into it, someone began talking about a girl who is in a vegitative state, "and the family just doesn't see it. They keep believing that she will come out of it." I was in a moment of shock, and thought, I know that is what some people thought of us. Thank GOD her parents are like that, and they hold out hope for healing, and refuse to not believe that the God who created their little girl can also heal her. But what the hell is vegitative? Can a human being, created in the image of God, really be called by anyone, "vegitative?" I realized that my heart couldn't take where the discussion might be going, so I grabbed my cell phone to pretend I had some important phone call to make, and it crossed my mind that I don't have an excuse anymore for taking calls in meetings like that, but I had to walk out. I AM that mom, and John IS that dad. We knew and we still know that God knew before He created Mallorie, what her last day on Earth would be like, and He loved us enough to figure out the details to provide us assurance that He was there, He had not forgotten. But even though she is not here with us, and even though He did not heal her brain and return her to full health to live several more years with us, I still know. I know that we were not hoping in vain. Because of Mallorie, I know some of what God is capable of, and when I wasn't sure that I could remember, I asked other parents.

I asked Alicia how long until Gavin responded to them after he had his stroke, and recognized his family. I asked a parent of a child whose son had a very serious meningitis, and was predicted to not survive, but over time (9 months, I believe she told me), he woke up and responded to her, and today he is doing homeschool courses with his mom. I took those stories into my heart, so when the overly persistent resident kept trying to drag me out to LOOK at the CT of Mallorie's brain in May, I didn't care. When one of the stream of neurologists, just meeting me for the first time, stood in the doorway to Mallorie's PICU room one day and told me that he "didn't think we would ever get control of her seizures," I gave him a tired smile and told him that I had more optimism for Mallorie than some of them seemed to, because I knew other children. I was willing to wait for her to heal, before I really worried that way. And what I probably didn't say was that Mallorie never really lived her life by predictions.

But now, I have to go to work, and sit in a meeting where someone talks about a vegitative state, and someone else says in a role play, "Are you retarded?"

Mallorie has changed me. Before Mallorie, I had already been sensitive to words like the R -word and some other pretty ugly words used to describe human beings, but back then, I just saw people who persisted in using those sorts of words as uneducated. I felt sorry for them, for their ignorance, and looked for ways to educate them without making them feel as foolish as they sounded. Because they didn’t know, I assumed. At least until they persisted after I’d educated them. :) But now, those sorts of words pierce me to the heart. They didn't while Mallorie was alive, really, because I refused to own any such definitions for her. Mal's kidney specialist surely thought I was a nut the day she asked me if Mallorie had any delays, and I said, well, how would we know? She's a baby, right? She seems just like a baby to me. Let's give her a chance. I refused to have the Early Childhood crew do any "tests" on her, because heck, I have heard what people say it feels like to have someone spell out in months exactly HOW delayed their precious child was supposed to be (even when the child had physical disabilities that prevented them from responding the way another child might, so the testing, itself, was flawed). I had looked at the sorts of things she'd be tested on, and figured if she couldn't use her hands to grasp, then how in the world could she "pass" on a skill that required she be able to do just that task? So we chose the no-testing route.

But now, things are different. Now, I will accept if she had an actual chromosomal difference, because I accept all that is/was Mallorie, gladly. Maybe it was an extra chromosome that made her so adorable, so cuddly, so joyful. The "denial" that I'm sure it looked like I had was never an unwillingness to accept her limitations or embrace every inch of who she was. We LOVED and still love the uniqueness that came along with her being exactly her. I only denied those labels out loud, and refused to go blindly along with others giving her labels. Initially, it was because she wasn’t supposed to live long after birth, and I wanted people to know her as a beautiful little GIRL by the name of Mallorie Rose, not “that baby with trisomy-13 or Trisomy 18 in Room 313." Pretty quickly, it became a way to prevent anyone from gaining "proof" that they could use against her when deciding about surgeries or other interventions. When the NICU fighting days were over, eventually it became again just wanting them to see HER. To prevent them from limiting her according to what they could see or read about her, instead of waiting to see HER unfolding. If she was "retarded," for lack of a better word, then we just never had to see it before, because as Matthew said recently, she was like any other baby. She had a first smile, a first tooth, a first time she laughed, her first babytalk word, the first time she realized she could see and move her hand, so she could play with it. We never, ever had to define her by those sorts of labels that I suppose are useful for people that need to plan lessons or write up medical visit reports. Because we always intended to homeschool her, just like all of her siblings, I felt she was blissfully free from all those names.

But now that she's gone, God needs to help the people around me who just don't know. In their not-knowing, they are going to say things that they have NO idea could hurt anyone in the room with them. I know now that I must have done things like this, myself. Because I am the queen of saying random things, all the wrong ways, especially when I am stressed, I already recently have heard myself stumbling with saying things all sorts of wrong ways, and had to make apologies, and I'm not even sure what I've done or said wrong, but I can see it in the eyes, that I've stepped on a wound. So I know it's ignorance mixed with innocence, but I don't know how many times I can just look at my hands in my lap and not say anything. Suddenly, these words mean a lot to me, and I want to shake people and say, “Were you looking for a word like ‘silly’ or ‘goofball?’ Because the word you just used is a medical diagnosis, not a funny slur. And someone might be hurt by the way you used that word.” Like me, or my husband, or our children.

I miss Mallorie all the time. So much. And I cry if I say it, every time. Even if I just say it to myself, or write it in a text. I'm grateful, you can't even know how much, to God for thinking of me when He thought of Mallorie. Messed up me, and as precious of a gift as she was for our family. I can never go back to wondering about whether I really make a difference in this world to God. He let me have her, and he sustained her through all those precarious moments and hours and days and weeks and years. He gave us months and months of relaxing in just how medically complex she no longer seemed to be! He let us see her personality blossom. He let us hear the cardiologist's proclamation that her heart was "perfect," after he watched her grow and develop for 3 years. He allowed us to watch how nursing moms who never had met her would be willing to give her milk to help her grow. He let us hear her laughter and baby talk.

There was a time when I said to myself that while I was grateful, because we "got" to have her as a blessing, I felt a little sad that her meaning was "wasted" on the doctors in Houston. Dr. B truly "got" her meaning, as did others like the OB who delivered her (what a beautiful email she wrote to the priest, which he read in her funeral). But by the end of her life, I began to wonder. Sometimes we never realize who or what moment changes our thinking, but we can be changed by an interaction, some words said. It's enough for me to know that she was there for so many months in Houston, so there must have been people she touched even there .... even though some of them had never been able to see her bubbly personality that was so evident before February. It seems impossible that she didn't have a purpose for that time, too.

I miss her so much, but I am so grateful that we kept having kids long enough to get to Mallorie. :) Every one of our children is unique, some more so than others :) .... but Mallorie .... She was so worth the wait.

This was one of her favorite songs. She was on my lap when I was playing that viral youtube email of the pink glove dance, and realized that she loved moving to its beat. Just like Bob Marley's singing.

Yesterday I learned that she and Bob shared a birthday.


Finding Normal said...

Connie, I wish I knew what to say. But I don't. And I don't want to say the "wrong" thing. The only thing I can think is that, with time, you will come to a place where you know what to say or not say in situations like you described. Or maybe other Mamas will know. I think your journey is amazing, and I think you should write the book (in all your spare time!) I hope that God will continue to guide you. You're right...He has this path already planned. I'm so glad you wrote, I've been worrying about you.

Jacquie said...

I think Mallorie will continue to leave an impact on the world. Your profession will help you guide others with no personal experience of special needs on the right and humane way to talk to parents. Some professional's see a chart. Mom's see the child.
My thoughts are with you and your family.

The VW's said...

And, just like Bob Marley has surely brought happiness and purpose to people's lives, Mallorie has done the same!

I will never forget your sweet girl and her beautiful face and the support that she brought to me, through you!

I can't imagine having to go through your days without her, especially since she brought so much to your family's life! God blessed so many people by giving us Mallorie to have and to share for this short time! God's purpose for her on this earth may be finished, but this purpose will never be forgotten!

I pray that God shows your family grace, peace, strength and comfort until you get to see your sweet girl again! Love, Hugs and Prayers!!!

amanda said...

I'm so sorry for your loss. I know you are hurting and missing her a lot. I just lost an uncle I was very close too to AML/MDS Sept 7, and one of the things he taught me through it was to not ever, ever doubt what God can do, because he had strong faith that God would heal him, and he did.

I also can relate to the labels you mention. I have a special needs nephew. Those labels just do not fit in any way!!

I found your blog with just a random click, but I think it was meant to be. I have never commented on your blog, I don't think I have ever visited, but I am here now and I just want to say you are a great Mom to your precious child Mallorie!!

Anonymous said...

I have been following your darling daughter's story for several months. I want to applaud you for not labeling your child. After months and months of testing I decided that my daughter, Daisy, had simply "Daisy-itis". In the dark days of watching her chest rise and fall with the assistance of a ventilator, I realized that was and is a perfect daisy - because daisies look like simply flowers, but really they are very complex and unique - like our Daisy - like your Mallorie. They are their own persons.

I am so very sorry for your loss, but I am glad to hear how thankful you are for the time you had with your darling girl. It's never enough time . . . our hearts are ever greedy for more time with our children. I think it is because when our children are born, a piece of our soul resides in their hearts - and we just long forever to reunited with that soul. I tell my children that they will never be alone, because they carry my soul in their hearts. Mallorie carries you with her in heaven.

You are an inspiration to all moms, and you have a voice which clearly speaks the thoughts that many of us have. Thank you dear woman. God bless you.

Sara Knowles (

Janet said...

Connie, I learned of Mallorie's passing from Ms.Cathy, and I am just so sorry for your loss. I don't have the "right" words because there are none. Just you, and your family, fighting your way through each day of your grief. I have been thinking of you and hoping to see an update, and I have to tell you that the video had me laughing and crying all at the same time! I don't really know why I was crying, other than that I could just see her be-bopping along to the beat and enjoying herself!
I also want to say that I totally understand you not "labeling" her, and I wholeheartedly agree. I hate it when general or "medical professionals", try to do that to Sage! It is very important to put together a team who won't do that! And from what I hear of Dr. B from you and Ms. Cathy, she is one who does "get" it. So thankful for both of your families that she is part of your families.

Much love and many prayers for your family, Janet Downey

Laurie in Ca. said...

Connie, I just love you. I am so thankful to have been someone you shared Mallorie Rose with so unselfishly. You and Mallorie have educated me in so many ways and I will be forever grateful for this. Because you shared, I understand a little bit more of how to be compassionate and just how special "special needs" is. I miss Mallorie and my heart hurts for your pain my dear friend. I am so thankful for your post here and I know that God picked you and John just for Mallorie. Her life for me was and still is huge, precious and perfect. It is for all of us to adjust to His Plan. I love you Connie and am always here for you. Praying always for your family.

Love and Hugs, Laurie

ANewKindOfPerfect said...

Connie, your love and acceptance of Mallorie are beautiful. I will never forget her gorgeous face. You have been in my thoughts a lot lately. (((hugs)))

I realized I never wrote back to your email. I'll try to get to it soon. Emily has an 18-1.2 MicKey button. I checked out the squirrel store - those syringes are like the ones we get at the hospital. They look great, I am going to order some! I don't know why our home health can't get us those.

Tamara said...

Connie, I just wanted to tell you that I'm glad you posted and are getting some stuff out where maybe it won't fester and make you feel worse. Sometimes venting is good for the soul and gives us more room for good thoughts and memories, rather than focusing on anger and sadness. I am SO not saying you don't have the right to feel these things, or think about them, but I'm hoping that putting your thoughts "out there" helps in some way. I know it helps me on occasion, and I'm able to focus on other things, rather than whatever hurt my feelings or made me angry.

We are all here to listen and help in any way we can, but I don't have an answer as to what you should say or who to say it to because there is no answer. I'm sure there will be days when you will tell the random stranger on the street or next to you in line, but maybe not your oldest and closest friend from high school that calls after "finding" you. Or maybe you'll let out whatever on any random person, but won't be able to speak up to a good friend or family member.

Anyway, I'll quit rambling now, but know that we are all thinking of you and your family, and being proud of you for who you are.

Laurie in Ca. said...

Thinking of you and your family tonight and want you to know I am praying for you guys. I love you Connie and pray you feel God's peace as much as you can.

Love and Hugs, Laurie

Cathy said...

This is my 3rd time to read your post and I am finally able to see through my tears to write. Even though I have nothing important to say except "I miss Mallorie on this earth." I miss that when I talk with you she isn't right there for you to tell me how she is doing. I could go on and on and tell you what I miss, but what for! Yes I know Heaven is wonderful but she isn't here right now...I think of you so much but know you have to talk to so many others , so know I am here.

Kim ( said...

there are many days i can still remember vividly that I couldn't have gotten through without the hope that mallorie and annabel brought to me when I carried Mary Grace. I would just come to her blog and stare at Mallorie Rose's smile. There is no smile like hers. Thank you for fighting so hard for her, she saved me many days.
I am sorry she is not physically with you and I am sorry for the pain you feel, it's so deep. But i do remember welcoming that (still do) because it kept MaryGrace alive in me. I will pray that God brings you His peace that is beyond understanding and that He will bring her to you in your dreams - as I still live for those dreams.
Much love for you and sweet Mallorie Rose......

MotocrossMom AKA Autumn H. said...

I do not know you and you do not know me or your family.
But I saw this with a full heart -

Thank you for documenting your entire journey and especially your fighting for her and your unwavering faith. You never gave up. What a remarkable gift that was to everyone around you. You and your family and Mallory probably influenced every.single.person who came through that hospital. Just with your attitude, I bet they walked out of her room with a different feeling. She left a mark, she made a difference. Even in lives and families clear over here in Utah that have never met or got to experience Mallory in person, only through your blog.
Thank you for being so brave.
Hoping that God sends some extra special arms and healing your way and continues to hold you up indefinitely.
-Autumn Heseltine

boltefamily said...

I am so sorry...there are just no words to ease the pain you are feeling. My heart just aches for you...knowing all too well the deep pit of despair I found myself in after each of the losses of my boys. Life is never the same...they do change us, it hurts, but they sure do change us for the better. I for one am so thankful for sweet Mallory. Her smiles brought a smile to my face on many a day when I felt like hiding under the covers. She is a special little girl and the Lord blessed the perfect family with the gift of her. I am praying for your heart as it learns how to continue beating without her.

Love and prayers,