Grief Chronicles, Volume 4

1. The nursery

Lots of people have asked what we were going to do about his room. The answer for right now is to just shut the door. The big baby things have been taken out – like the big toys we had around the house. His swing and exercauser for example. My friend Mary came to our house before we came home after having been gone after Noah passed away and took all that stuff out and brought it up to my parent’s house. My parents have a storage unit and took it from there up to be stored. I can’t take apart his room though. He hardly used it. We used the changing table, but otherwise he was in our room mostly when he was home. It still hurts though. His ashes are in there, and occasionally, it feels good to go in there and sit with him. I can’t do it very often. I look at his little urn and wonder where on earth this all went wrong. Logically, I know that this was not our fault. There was nothing to be done. I just miss him so much though, and can’t believe that all that is left is a jar of ashes.

2. Hard to be around babies.

I am sick with jealousy and loss looking at other people’s new babies. I miss that feeling of having a newborn to care for more than I can possibly tell you. I ache for that feeling - to hold them and anticipate and see to their needs. I am an incomplete person without Noah, and I always will be. I was robbed of that precious time, and my mind is stuck in that newborn phase with him. Seeing very small babies puts me back in that time. That will just take a while to overcome I suppose. No idea what to do about it or how to get comfortable with it.

3. Do what feels right in the moment.

I have been struggling with this balancing act. My friends and family has done a great job of keeping me busy the last several weeks since this happened. My first instinct when they call and ask me to do something that sounds fun is to say “yes, I am in.” But then several days will pass of me being busy and I wonder, am I taking time to grieve? I feel it most when I am on my own. So, am I grieving enough? Or not? I have decided after much thought and consultation with grief counselors is, do what feels right in the moment. If I need to cry, cry. If it feels good to be out with the people I love, do it. Whatever feels the best to me is what I should be doing. Everyone does this their own way. This is just what works for me.

The times when I am crying and horribly upset over it all, I feel like I should do something to change my environment. Distract myself or do something so that I stop wallowing. Then, the times when I get busy doing things, and it has been a while since I last cried and felt upset, I feel guilty for not being more destroyed over what has happened. What is the right thing? Am I grieving enough or not at all? Am I in what the books refer to as the shock and disbelief stage of grief? Or am I about to sink into the worst depression I have ever known?

4. Working out helps.

It has been so hard waiting to recover enough that I can get back on a bike. I need it worse than ever. I have a lot of energy and pent up feelings that I need to just go pedal out of me. I finally got fed up waiting and took some small bike rides around the neighborhood the last couple of days. I feel all right. If I have learned anything the last year of being pregnant, doing natural childbirth and what not, it is that how I feel trumps whatever anyone else says. I am in tune enough with my body, and I do take it slow when told, but I know better what I need than anyone else.

Today I took my first semi-real bike ride. I went out for 45 minutes and just did some easy spinning on the Greenways trail (relatively flat, paved trail that goes on for miles). I left my heart rate monitor behind, didn’t count calories burned, and didn’t shove myself up any big hills. That wasn’t the point. I just needed to go and go and go for a good long time without stopping, just spinning and burning up some energy. It felt great. I am horribly out of shape (cardiovascular shape I should say) so it didn’t technically feel that good, just good emotionally. I can bomb down hills like nobody’s business, carrying around 40 extra pounds. I had to watch that. When I took off, I could almost hear Noah’s little voice cheering me on, saying “Go, mommy, go!! Faster, faster, faster!!” It was a healthy thing to go do, and something positive for our family overall. When/If I get pregnant again, I want to go into it the way I did with Noah…very healthy, and at the top of my game. It made for a very healthy pregnancy. So, the healthier I am, the healthier our family is. It isn’t just for me. I have to keep telling myself this, because doing things for myself feels so empty and lame. I gave up on that a long time ago in favor of being a mother. Not having a child to do things for hurts. So, I have to tell myself that this isn’t for me. It is for our family. Either way, it felt good to be out today.

Grief Chronicles, Volume 3

1. Having to tell people sucks.

I never really realized what a huge network of people I am connected to. All of the main people in my life know what happened. There is a whole other group of people that aren’t as close to me, but I still see regularly enough that I have had to explain over and over again what happened. It tears me up each time I have to do it. To have to say it - ”he died” – is agony. At first, I made my mother do it. Then, Chris did it for me until I felt so guilty that I started doing it myself. Chris hurts from this just as bad as I do, so it isn’t fair for me to make him do it over and over again. Here’s how it goes - once I say it to someone I then deal with the shocked silence, and listen as they fumble for a recovery and try to find words of support, that honestly really don’t help that much. Then I fumble for words to let them know that it’s ok, when really, it isn’t. I feel bad. I know they are just trying to be nice, and it has to be done, telling them so they don’t keep asking me about how the baby is. The whole thing is terrible, and there is no good way around it. I try to head them off by if I know that I am going to see someone that I know doesn’t know, I call ahead of time so they have time to recover and not be weird around me. It always brings a fresh round of pain though, to have to say it.

2. Making the house look different, yet the same helps.

We stayed at my parent’s house for the first week, maybe longer after Noah died. I can’t really say how long it was because I didn’t really have a very clear concept of time during those first days. Eventually, the time felt right to come home. It was hard for us to come back and see the place that we spent the precious last couple of days with Noah. Chris’s parents had done an awesome job of cleaning up the house for us, and putting away things that might upset us. My friend Mary came by and picked up all of the big baby items we had out and brought them up to my parent’s house and tucked them into the garage. I never saw any of it. Still, we spent two days with Noah, hauled up in our bedroom getting to know one another better. I think our bedroom was just as hard to be in as it was to be in his room. It hurt to feel the emptiness of him. It felt great to have him here, and now he is gone. I have since been working on the house trying to do some decorating. We bought the house in November, and Chris had spent 3 months fixing it up so we could move in in February. I couldn’t help with the renovations because I was pregnant and couldn’t be around the chemicals associated with home improvement projects (and those of you who know me and my love of power tools knows that that is quite a sacrifice!). I picked out what has gone into the house, but haven’t really made my own personal mark here, not like I would want to anyways. So, I have been working on adding and changing a few things so that it looks different, but yet still our house. Especially in our bedroom so we won’t be as haunted by those few days. I got a new TV, and am adding curtains and a rug. I also added a rug in the living room, and am adding small decorative things here and there.

3. Am I a bad parent?

New parents are incredibly neurotic. Suddenly, you are handed a newborn and are entirely responsible for it’s health and well being, whether you have experience with newborns or not. When your baby dies, you are left to wonder, how did this happen? Was I that bad at being a parent? So bad that my child died? Sometimes I look at Noah’s ashes and wonder that to myself. Logically, I know that he was sick, and there was nothing we could have done. No way we could have known. The symptoms of his illness were the same traits any newborn would show. He slept a lot and wasn’t so interested in breastfeeding. All babies are like that. It is one of those illogical thoughts that creeps up now and again.

We are fortunate and it seems the minority in our child’s death. We know what happened. He was sick. It has been confirmed over a few different blood tests. For most parents, their babies are written off as SIDS (Sudden Infant Death Syndrome) which is really a blanket diagnosis for “your baby died and we have no idea why. Some illness or something we haven’t discovered yet.” Those parents are left to go over and over again in their minds what happened the night their baby died and second guess everything they did. I know this because we spent a night like that before our pediatrician called and told us about MCAD. It was agony. It is a reminder that our situation could be a whole lot worse.

Grief Chronicles, Volume 2

I am ready to let go of some more stuff. Posting some of this last week helped. I mulled over each point until I needed to get it out somehow. I wrote it down, and then posting it was like releasing it out into the universe and being done with it in a sense. Or, being more comfortable with it is probably a better way to say it. Thanks for being my free therapists. Here are some more that I am ready to share.

1. Thoughts of “what would have been.”

Hard one to talk about. Every so often, I am reminded of the small moments of what I will miss watching Noah grow up. Today, Chris and I were out walking at Garden of the Gods, and I saw a little boy in a floppy hat running, trying to keep up with his dad as they hiked together. Or eating pancakes for breakfast on a Saturday morning, and envisioning little Noah stuffing a too big bite of pancake in his mouth. Or grocery shopping, and seeing him clipped onto my cart in a car seat, interacting with him and being silly as we complete a weekly task together. Moments that will never happen. I didn’t realize how much I would miss. Moments big and small. Mostly the everyday stuff of being a family. I see him in my mind both as the baby that we enjoyed for those 4 days, and as a small boy, able to do things with us. These hurt quite a bit. It is the death of a dream as well as a child. For nine months and 4 days, we dreamed of this boy and all we wanted to share with him and teach him. I am grateful that I know what he looks like and what his personality was more or less like. My daydreams of this stuff have that definition. It is both painful and a comfort.

2. The need to keep him close.

My mother-in-law or Chris or someone suggested in the days following Noah’s death that we get some nice frames for pictures of him to have around. They were at the funeral, and now they are up in my house. It is funny…we moved into our house in February. It was a foreclosure property and was trashed when we bought it. We have made tremendous progress in cleaning it up. It has felt like home in a sense. It is our house after all and has our favorite paint colors and furniture and what not. It felt infinitely more like home once we had Noah’s pictures up. It brought a sense of comfort that wasn’t quite there before. Hard to explain. We have a small album on our coffee table of many of the pictures of those four days. We also have framed pictures up on our nightstands and scattered throughout the rest of the house. I just need to look at him as much as possible. Maybe to remind myself that he really was here. He really did happen. My favorite at the moment is one that they took at the hospital with his eyes open. He is looking right at the camera. He slept so much, we rarely saw his eyes, so this one is special. I also wear a bracelet that has spots for pictures in it that are filled with some of my favorites of Noah. Ask me to show it to you next time you see me. When I am having a really hard day and am feeling particularly cynical about my life, I look at his little face on that bracelet and it reminds me that I need to try harder. Noah deserves to have a good mother whether he is here or not.

3. The best place to catch me crying is in my car.

I seem to feel the loss the hardest in my car. It is time when I am alone usually with my own thoughts. I always have to have music on when I drive. I like the noise. I can’t, however, stand listening to peppy or happy music right now. That leaves the sad stuff. My own thoughts + sad music = me crying my eyeballs out as I run errands around town. Today, I was out and there was the pretty route I could drive home or the fast way to drive home. I REALLY wanted to take the pretty route, but I couldn’t handle more time alone with myself. Ugh…

4. Having a new understanding of mortality.

It is so unfair that my 4 day old infant couldn’t live longer. None of us are meant to stay here on earth forever. We are all born with an expiration date. Everyone, in a sense, knows that. It doesn’t hit us that it really is true until you actually do lose someone important, especially in an unfair way. Losing Noah wasn’t like losing a 90 year old grandparent who had already lived a full life. Understanding that anyone can go at any time, and no one is immune from this is seeping through us. The people closest to me can and will leave me. When or if we have more children, I will now get to be the mom who wakes her kids up in the middle of the night to see if they are still alive. I don’t see how we can not be paranoid about this.

5. Carpe Diem

I know two things for certain. 1) Life is precious, and 2) you never know what curveballs life will throw at you. So, if there is a friend or family member that you have been meaning to connect with, do it. If there is something you have been meaning to do with your life but you haven’t gotten around to it, do it. Get married. Have babies. Spend time with the people you love. When something major happens that causes you to reflect on your life, these are the things you regret – what you didn’t do. I have no regrets about Noah. I am so grateful that he came into our lives, even though it was brief. I love him more than I could ever possibly tell you. I was a hands on mom that spent as much time with him as I possibly could. I know there are others that regret not calling and coming over after he was born, and I hate that. Maybe there was a reason for it – that his short time was meant to be spent with Chris and I. I can say that if we are blessed with having more children in the future, I will be calling you all to come over and see them because I know that I do wish more people had met Noah. He was something to know. He was pretty amazing, and wish more could have seen that. I know that is part of my mission in life now - to tell his story and shout it from the mountain tops if I have to to let the world know about my incredible son.

Noah's test results are in

We finally have a confirmed diagnosis on Noah, and the cause of his death. The results came back from the lab Monday that he officially had MCAD. He had the most common manifestation of it as well. Of the children that get MCAD, less than 10% of them get sick and die in the neonatal period. Of those babies, 90% of the caucasian babies show the same gene change. Noah had this gene change. They were hoping to find this as it helps prove the research they have done on this to date. It helps prove the case for screenings and helps them in developing treatment plans for babies that have it. The results show that more than likely, Chris and I are both carriers of MCAD, and are now officially good candidates for genetic screening and counseling. We have a date set to go up to Children’s Hospital next week to go do our blood draw to look at our DNA and begin the process. After they take our blood, it will be several more weeks of waiting for our results. Either way, it feels good to be moving forward with understanding what happened. Chris and I are so relieved. It is comforting to know that what happened to Noah had a name. It wasn’t something either of us did or could have prevented. Most parents don’t know what happened to their babies, and we are unbelievably blessed that we know. We are eligible for prenatal screening and expedited test results on any future pregnancies/babies, so that is comforting to know as well. For those family members out there that are wondering what to do about testing themselves, when we go up to Children’s Hospital next week, they are going to help us write a letter that explains exactly what you need to do. You will need to do this through your regular doctor and they will give us the specific test name you need to ask for.

Another side note, the Noah Robert Wilkerson Fund has raised about $4,800 to date! They were blown away by this at the hospital. I think they normally get a few hundred bucks, so this is huge! If you have wanted to donate but haven’t yet, the address is below.

The Children’s Hospital
Inherited Metabolic Disease Clinic
Attn: Noah Robert Wilkerson Fund
13123 E. 16th Ave, B153
Aurora, CO 80013
www.thechildrenshospital.org/conditions/genetics/index.aspx.

A HUGE thank you to everyone who has contributed! This research has been the one positive thing that has come out of this. Being able to fully study what has happened in a way that can benefit others has been a comfort and a blessing. Thanks to those of you who have contributed so we can keep this going.

Grief Chronicles, Volume 1

I have been writing this for the last few weeks and have been debating on posting it. This is my experience with the grief process. Some of it is too personal for me to share just yet. I have written 10-11 pages or so worth of it so far offline. As I come across another thought or feeling, I write it up and get it out of me. It makes me feel better about it, and I am most comfortable doing so in how I talk to you all through my blog. I will post more of it as I feel comfortable. These are a few I don’t mind sharing at the moment.

1. Realization that the worst really can happen.

We are spending a lot of time keeping very inwardly focused, and trying to prevent any major (i.e. bad) things from happening. I don’t think there is anything worse than losing a child. Any additional bad thing that could happen to us now would just destroy us. So, we could make a career in accident prevention. Except I wish it were that simple. For example, the other day, I had a hair appointment at my favorite salon up in Woodland Park, and I had my dog Maggie in the car with me. She goes with me everywhere. Her feelings get hurt if we leave her at home. She would rather nap in the car than be left at home. In the summer, we have to break with our usual tradition of taking her with us everywhere when it gets to be too hot. My brain is not functioning at full capacity, and I can’t believe I brought her with me. I spend an hour and a half usually at the salon, and I didn’t even think as I left the house that that is a long time in the car. I was sick with worry the whole time. She was fine, it was in the 70’s in Woodland Park – so not worth worrying over. But I did worry. HATE that.

2. Grief groups and books freak me out.

As you can see by my years worth of blog posts, I am pretty much an open book and I like to share with others. Therefore, it seems like grief groups would be a good fit for me. Maybe someday they will be, but for now, it is a lot to swallow. Hearing other people’s stories of loss of their babies is really hard to hear. I can so relate to them having just been through it, but I somehow take on their grief as well. I think it plays into the whole “the worst can really happen” thing. Every time I realize again and again that the worst can and did happen, it threatens our sense of security in the world and makes it worse.

3. My brain is mush.

I am doing the goofiest things these days because my brain is compromised. I am pretty much on systems overload on all levels. I was out shopping the other day, and I got into my car after I had finished up and was pulling out of my parking spot. I thought the car was in drive, but it was actually in reverse. No one was behind me thank God. Also, the other day I was making Chris a sandwich for lunch. He was at home, but for whatever dumb reason, I put his sandwich in a zip lock bag like I was packing his lunch. I had it all in there and zipped up before I realized. I had the plate in front of me to put it on and everything. I also drop everything. I have been freaking Chris out. He thinks I have had an accident or something (see note above about accident prevention.)

I am also the ADD queen right now. I start off the day with a list of things I would like to do. I don’t quite know where my day goes or what I did with it, but suddenly it is gone, and I got nothing done that I wanted to. I know that now is not the time for to do lists, but there are basic things that should be taken care of. Stupidly simple things like return overdue library books or return things people have brought over like casserole dishes and stuff. Crap. I just realized for example that I just got back from the grocery store and haven’t put anything away. I have ice cream melting on my kitchen floor, but I got distracted with this. Going to go take care of that.

4. My body grosses me out.

I am done being pregnant and taking care of a newborn, but my body doesn’t know it yet. For the first couple of weeks I still looked pregnant and have had to deal with people excitedly asking me “when is the baby due?” That really hurt. REALLY hurt. And, they didn’t get why that made me upset, and I don’t feel like telling perfect strangers my sad story. I also don’t want to make everyone around me pay for my tragedy, stranger or not. I did get to the point when I figured that seriously, how freaking rude are you to ask me that?! I mean, when I was close to having Noah, I was enormous. Sure, ask me that then. But I am now in the range of “is she, or isn’t she pregnant?” Let this be a note to you all dear friends, unless it is VERY obvious, don’t ask women that!

I am still about 40 pounds overweight. I had put on about 70 pounds total with my pregnancy, so it is coming off, but I can’t work out until I hit the 6 week mark postpartum, and because of the grief stuff, I keep forgetting to eat (I am working on that. Need to try to get on a schedule.) I will feel better when I can take this out on my bike rather than just sit here like a bump on a log. I can walk like I did when I was pregnant, but I am dying for some big cardio workouts.

I also have the WORST stretch marks leftover from having PUPPPs. I am doing the cocoa butter/vitamin E thing. Pray that works, because seriously…gross. I won’t even go into the rest of it. Pregnancy tears your body up! When I had Noah those four days, looking at him, loving and caring for him made me so not care about what I looked like or what bringing him into the world did to my body. Being with him and being his mother was just the best thing ever. It so didn’t matter. I remember thinking at the time about how this is how moms get to be frumpy. Love is blind, and this kind of love blinds us to vain things like our appearance. Not having him here, and being busy with his needs has given me time to look at myself in the mirror every day and see what this has done. Oh boy, do I have work to do!

5. Having to get comfortable with new emotions by the minute no matter where I am.

I am a pretty tough girl as a whole. As I have gotten older, I have gotten better and better at being modest and in control of myself (wasn’t so great at that as a teenager, but who is at that age?!) I fear being out in public and having an emotional episode. I have had to let go of that, and it sucks, but I really have no choice. I went to my usual weekly allergy appointment for the first time since Noah died last week. The ladies that work there have been so excited for me and have enjoyed watching my pregnancy progress. Chris called and let them know ahead of time before I went so I wouldn’t have to explain in person when I got there (he is awesome, and I am so lucky to have him). I went at a weird time. I usually go at lunchtime because of work, but because I am off, I went in the morning. Guess who goes in the mornings on that particular day…the postpartum nurse that took care of us for two days in the hospital. She lit up like a Christmas tree when she saw me and excitedly asked how I was doing and how the baby was doing. I told her that he died and the situation. She started crying, then I started crying, and the two of us hugging and crying was quite a sight in the middle of the doctor’s office. Then I saw the allergy nurses. More hugging and crying all the way around. It just is what it is. I don’t wear that much makeup any more because I know that I am just going to cry it off. What’s the point? I dread the moments when I see people for the first time since this happened because I worry about this. It always ends up ok, so I don’t know what my problem is. I have to get comfortable with not always being tough girl.