Monday, June 25, 2018

Happy 9th Birthday Noah!

Dear Noah,

Hello my sweet son. Tomorrow I will wake up, and you will be another year older. You have reached the last of the single digits. I can't believe it's been 9 whole years since I last held you. I still think about you every day, and what a journey it has been since you first made me a mother.

First of all, I have to celebrate a victory with you. A couple of victories really. Your short life has brought to light some ways in which our country really doesn't do the best that it could for its infants, and I (with your help behind the scenes surely) have worked hard to right some wrongs and we have done some really cool things. First of all, this spring, I got to see some of the results of the federal law that we passed in 2014 with the nationwide effort to make newborn screening tests faster. Representatives from 28 state labs came to Denver to share how they have been working together on this, and it blew my mind how much your story had touched their hearts and minds, and it is saving lives! It's funny - that law was passed, and then there wasn't much more for me to do, so I went on with life when lo and behold, all this activity has been happening, and it was so incredible to see it. THEN, back home in Colorado, we were able to pass a law here too earlier this month that will also change what happens to infants in this state with genetic disease or hearing loss in a big way. It makes me cry happy tears to think of it. Living this story of loss is one that I will struggle with with for the rest of my life. But then here, so many families will have the chance we would have given anything to have had access to. They will get to fight. They will have tools to help these children grow and be successful. I wish I could have bent heaven and earth to give this all to you when you were born, but I didn't know what I didn't know. I am glad the love that we have for each other could still create all of this. So, what's next? Ha! You and I make quite the team. I love you and would do anything for you. If I can help in some other way to make a big change for some special needs kiddo or other, you give me that nudge and we will keep on doing what we do.

I know last year I was proud to share that I am taking care of myself. I am going to renew that promise. This year is a big one for me. I will be turning 40, and I am trying to not ignore how I feel or what I need to be doing to be healthy. That is hard with work and kids and life. But I know you want the best for me, and I promise to reach for those things that I know I need. I have a big burden in this life, carrying grief. It is lonely and hard. No one knows what to do or say to someone like me. I am a mom of three kids. Two are here on earth with me, and one is here in spirit, and my non-traditional family isn't so easy to understand. I walk through life never getting to talk about you in most circumstances. But, I choose you. Being your mom is a privledge and honor, and I will always be proud of you. And, I will do what I must to carry the burden of grief as best as I can for you.

Finally, thank you for ALWAYS looking out for us, and especially for your siblings. Aaron and Katie both love their big brother so much. I am laughing as I am typing that. You are a baby in all your pictures, and it is hard for Katie's 3-year-old self to understand that you are her big brother when she looks at those photos. To her, you are her baby brother, and she wants to hold you and mother you accordingly. She is really getting that she has two brothers rather than just the one, and she talks of you often. Aaron loves you too, and has been so excited that your birthday is coming so we can celebrate you. You must be so proud of them. They are an absolute joy, and all the swim lessons, ballet lessons, trips to the zoo and dinosaur museum, reeces peanut butter cups and ice creams must make you smile. I love our family. No matter where you are in the universe, you are one of us, and are thought of through it all.

We are celebrating your birthday with fun. We are going to see a movie together, eat at favorite restaurants, hit a splash pad, play games. I am looking forward to a happy day of remembering one of the very best times of my life, those four precious days with you, where you lived in our arms non-stop, listening to your cute funny noises, counting fingers and toes, and falling in love with one of the most fascinating people I had ever met. Happy birthday to you, my love, from all of us. We all think about you and miss you every day.


Sunday, June 25, 2017

Happy 8th birthday Noah!

Hello my love,

Happy birthday to you! I can’t believe I am the mom of an 8 year old. It has gone fast and slow. It’s funny. Some years leading up to your birthday, I know exactly what I want to say to you, and can even have the letter put together weeks before your birthday, but this year, I have debated a lot. Do I talk about what we are doing these days? Do I talk about what it’s like to grieve your loss this many years in? I don’t exactly know. The fact is that there is a lot going on with our family. And, I grieve for you and miss you so much. It isn’t the same rough ride that it was years ago, but I will always miss you.

What a bizarre year. Our family is in transition. Aaron has finished his first year of kindergarten, and no surprise here, but he did brilliantly at it. Katie is becoming a busy little girl, more than she is a baby at two years old. I know you love them both so much, and thanks for always watching over them. They fill me with so much love and joy that I find that you are one step away from me lately. People ask me how many kids I have, and the guilt and emotion of saying “2” rather than the more truthful “3” answer doesn’t hurt like it did. Which, frankly, that hurts that it doesn’t hurt. Does that make sense? I know you want me and us to live a whole and full life, and that this is by design, but you know what? I am a mom of 3. You count. Even if I say 2, I will always really mean 3. You know?

Back to the transition part, a year ago I took a risk and left a job I loved to try something new. Ten months later, I was laid off. It has been a wild ride. I can’t bring myself to regret the choice I made, and thanks for always helping us to make the best of things. I am taking the summer off to be home with Aaron and Katie and to work on an important volunteer project, and it has been such an amazing time! I needed the rest and the love of our family. What a joy it has been! Can I keep it forever? Is that possible? I am just hanging in limbo and enjoying this gift while I’ve got it, and will wait for those nudges if I need to be doing something else. I believe that you are behind the blessings that come our way, and thanks for sending this break. Please guide me and us as we figure out what’s next.

Speaking of volunteer projects, it looks like we are at it again. It’s early yet, but I hope we can finally make some meaningful and more lasting changes in Colorado for babies. I am glad that we can help. Your story is powerful, and I love making something so painful into something else more productive and life changing for others. Please keep helping to move this one forward, ok? I would love to write to you next year with a “guess what...we did it!” sort of victory. I love thinking about all these lives we will never know who were forever changed in such a powerful way because of what you did for them. I am proud of you my love. Let’s do this, ok?

I am taking care of myself. I know you would want that. After making it through this season of birthday/anniversary for you this month, we are taking a fantastic Disney trip (thank you!) that has had me fired up since we booked it at Christmas. I used it as motivation to lose the baby weight and get in great shape again. Your siblings and dad deserve the best me that I can give them, who can keep up and be active (I mean...Aaron. So much energy! Ha!) and here I am again, the way I should be. I haven’t checked, but I am sure my cholesterol is back down, and risk factors are minimized. I will do my darndest to keep it up. I miss you like crazy, but I want a long and full life before I join you, and I will work hard at it. I promise.

I love you so much. Sometimes I wonder what you would be up to as an 8 year old. But it really is moot. I know you are there. You are not the typical 8 year old. Rather than school things, and developmental milestones, you are always here, watching, guiding, and loving us from afar. Your “to do” list in this world is just different. Thanks for always being here for all of us. We think about you all the time, talk about you, look at your pictures. You are just as real to us as your siblings are and you always will be.

Happy 8th birthday. Dad, Aaron, Kate and I love you more than you know.


Saturday, June 25, 2016

Happy 7th Birthday Noah!

Dear Noah,

It is June. It is a time for taking extra special care. It is a time for remembering. It is a time for smiles. It is a time for tears. It is a time for taking stock of what we have and feeling grateful. It is a time for reflection on just how far we have come. It is a time when I never know what to expect. It just will be what it will be. June is your month – the anniversary of when you were born and when you died. I don’t know if I look forward to it or dread it, but here it is, and you are turning 7 this year…7 years since my arms last held you.

I have been beating myself up somewhat, because 7 years in, I expect to not feel so raw and not in control of myself. And really, by-in-large, I do better and better each year. But, I do find times where I have a flashback to that horrible night, or have a nightmare that brings back those details too, or I am in my car, and a song comes on, and it hits me the wrong way and the tears just come. I miss you love. I miss you.

That said, I am always grateful for your life, and that I alone hold the honor of being your mother. I am proud of you. I am proud of your memory and all we have accomplished together both when you were here, and the amazing things you have inspired since your death that has changed so many lives. You are simply an inspiring soul overall that I am glad to know and love.

There is so much going on right now. Our family is in a season of change it seems. I have switched jobs. What a boring thing to talk about! Ha! The significant part of it is that I feel like I am letting go of a life raft that I once needed so badly. When life was hard, I had a job that I knew very well and loved, and it gave me an opportunity to come in, go on auto-pilot on tasks that I had down to a science in my own mind, and focus on things that had nothing to do with grief and loss. I could get lost in it, surrounded by people who could somehow make me belly laugh when life was just not that funny. As with most life changes, when you wait for the right thing, it feels good in your gut, and this move feels good. I hope I can build myself a new life raft to keep me busy during the tough times in life, and have the opportunity make a new impact on the world. I believe that our good things that come to our family have had your hand in it somehow – we have the ultimate cheerleader up there in heaven – so thanks for your part in what feels like a blessing.

Your amazing siblings are growing and doing new things. If we can’t have you to love and squeeze on, these guys are an over-the-top awesome make-good from the universe. Aaron is getting ready to start kindergarten in the fall. He is nervous about it, but I know he is so ready. Please be there to help your brother through this change in his life. He is a smart, creative and thoughtful kiddo with so much that he brings to the world. I am praying that this is the beginning of a wonderful new chapter of life for him and that he continues to blossom.

Katie-cat is also getting so big. Our little sweetie has many thoughts and opinions of her own, and though she lacks the communication skills to tell us what is on her mind, she has her own ways of keeping everyone in line around here according to her master plan! She loves saying “hi baby!” to your pictures around the house, which is so cute. I think she loves you already. She will be a nice balance of following Aaron around and wanting to do what he does, while still being a girly-girl who likes her baby dolls, cooking in her play kitchen, and having her toenails painted. We are just beginning to see who Miss Katie is, and it is so fun to watch her figure herself out. At the heart of her, she is just a lovely human being, and thanks so much for sending her our way! You have picked perfect souls for us in your brother and sister!

Your dad just keeps being the same old person we know and love. He is such a great father to Aaron and Kate, but then you always knew what a natural he is at this stuff. He has been riding his bike more, which has always been such an important thing to him, and I can see what an impact that makes on how he feels about life in general. He will ride for you in the Courage Classic again in a few weeks. He will have your picture on his back as he rides those mountain passes. He and I each have our ways of remembering you and making you part of our lives even though you are gone, and this is how he does it. You are on his mind every day and he loves you so much.

Happy birthday again to you sweet boy. You are such a huge part of who we are as human beings and who we are as a family. It is a tough thing, loving someone who is no longer physically here anymore.  It is hard to explain to your siblings, though they weather it well. We can’t stand to hide away someone who meant so much to us, so we choose to embrace you instead and find ways to acknowledge you and feel thankful that we had you. I love you so much. Kisses and hugs to you sweet boy.

Lots of love,

Thursday, June 25, 2015

Happy 6th Birthday Noah!

Dear Noah,

Every year that passes and you get another year older, it is amazing to me. Even when children are here, they say that it goes fast. I suppose it is the same for when you are gone too. Happy birthday to my 6 year old boy!

When I think of this last year, all I can think is “we did it!” You have helped to make some amazing things happen, and I am celebrating with you this year.

You have a sister! She is incredible, beautiful, funny, sweet, and absolutely perfect for us. As you know, the pregnancy with her was tough. I was sick a lot, and high risk. It was scary, but I just knew that you would protect her the way you protect Aaron, and sure enough, she is here, and we are both fine. Our family is complete, and it is such a tremendous blessing to sit here finally. Our beautiful family of five. I love the way that she has fit in like she was always meant to be here. You picked a perfect soul for us in Aaron, and thanks for doing it again with Katie.

You have also inspired federal legislation that is now in place that will save lives and ensure that those lives are given the greatest opportunity to be lived healthy and whole. I am SO PROUD of that accomplishment, and am dumbfounded that it has come to pass. I know you were behind it, motivating the right people to help tell your story, and for the open ears that heard it and were moved to action. What an amazing son I have! Superhero. I’m so proud to call you mine!  What happened to you was tragic, and to save others from living the same fate is such a healing thing for me to witness.

We moved to a new house. That was so crazy how that came to be - a series of events where we were in the right place at the right time. I was always unsure of how I would feel leaving your house that you lived in, but the truth is that that place haunted me. It gets to this time of year, when the videotape in my head kicks in whether I want it to or not, running me through what happened, again and again. I always hated being in that house in June, and no matter what I tried, I couldn’t make it stop, and feel at ease. I am hoping that this fresh start in a house ready for new memories will help. It is a wonderful place with open spaces, and lots of room for our family. The truth is that you will always be impossible to get over, but at least those physical reminders of how hard that night was are gone. Thank you.

I have to admit that it is strange to see other children your age start Kindergarten, lose their first teeth, and have other milestones that you would have reached this year if you were here. I do think if you when I see those happen. I miss that I won’t have those moments with you. Or, it is bizarre at times when your dad and I are having the time of our life, playing with Aaron and Katie, I find myself thinking about you, and wishing that our family could be complete with all of us here. I do miss you terribly, but thanks for the fun distraction of your amazing siblings. They are two wonderful human beings that I am blessed to share my life with. If I can’t have you here with me every day, they are a good fill in. They certainly don’t replace you, but are a big bonus to have in addition. All three of you guys are hands down the very best parts of my life, and the most fascinating people I know.

Your dad and I think about you every day, and miss you, miss you, miss you. We love you so much, and are, as always, so proud to call you ours. Happy birthday sweet boy.

Lots of love,

Thursday, June 26, 2014

Happy 5th Birthday Noah!

Dear Noah,

Happy birthday sweet boy. Has it really been five years already? It feels like a milestone of a sort to get to this point. A lot has changed between now and then, and I am proud to say that five years in, we miss you like crazy, but we are doing ok. I feel like I am filling out lots of health questionnaires, being pregnant again and inevitably your story comes out through those things. The doctor then turns to me with pity, saying “I am so sorry.” I found myself saying the other day to a new doctor, “really, I have a great life,” and found that I genuinely meant it. It was kind of a revelation to realize that I felt that way.

It is silly to realize this. I love your dad more than anything. Aaron is amazing and keeps us laughing and on our toes every day. And, your baby sister is on her way, which we are so excited about! I feel like you have been behind the scenes all this time working hard to continually send us reasons to smile and carry on, and this latest development of a new baby is over the top cool. We all can’t wait to meet her and know, just as we did with Aaron, that you have picked out the perfect soul for us. I know you will look after her like you do with Aaron, and thank you so much for that.

You’ve met a lot of our family this year as they have come your direction, leaving earth, and heading home. I have lost three grandparents, which I know are playing with you and spoiling you rotten as they did with me when I grew up. You are meeting my Uncle Bob, who is just a goofball who is probably making you laugh. And, you are getting to see my dad, Pawpaw again. Losing you was really hard on him, so I know that he is enjoying being with you.

This year, I am trying to do us both a favor and let go more and more of the pain of losing you, and embrace more fully the joy of what it was to have you here. I know that you are around us every day, and I absolutely love that. It is a blessing. For all these years, all those emotions, both the beautiful and painful parts have been so tightly bound together, and holding on to the painful parts of it doesn’t do any of us any good. When my heart and head start to go that way, I let it go. I look for you in the rainbows you send us, the blessings that come, the funny ways that you let us know that you are always there, focusing on those things instead. It takes some discipline, but I think it is working. The pain keeps you fresh in my mind, like a videotape set to repeat, so I feel like you are less present at times with this new thought process, and that is hard, so please keep letting me know you are there.

Please watch over the baby and me. We have some complications we are facing as you know. I don’t accept risk very well at all after losing you, so it is easy to let my nerves get the best of me. I know that this will all be fine, and that next year in my letter to you, I will have misspellings and weird grammar from being tired from chasing after your amazing siblings! This is just a season of life – having babies – that is about over, and life will be about raising these kids instead. I think your dad and I never quite got comfortable with this phase of it. Life is just so fragile when it is this new, and we had a rough start at parenthood having to say goodbye to you so soon. It isn’t such an easy thing to get over as we have had more children. All the same, I am so grateful we have gotten to have more, and now have this amazing family, including you.

I love you so much sweetheart, and I am grateful for your life. I can’t imagine a life where I never had the chance to know and love you, and am so glad that I have had that experience, no matter what it has cost me at times. It’s an honor to be your mom, and to be blessed with your life and your story. Thanks for being ours. Happy 5th birthday.


Saturday, May 31, 2014

Washington DC - What it's really like doing this...

Home sweet home! I just got back from Washington DC, where I continued to push for clearer policies and care with the turnaround time of newborn screening test results. Before life gets back into it’s usual pattern, or have people building me up with “atta girl!” sort of stuff that can make me forget, I want to take a moment and process what this is really like. It is hard. I am emotionally drained. Someday, when I am done doing this work (will that day come? Who knows!) I want to remember the good the bad and the ugly. Or not sure if that is even the right way to describe it. Let me just see how this goes.

It is hard to do this – speak in front of these people. It’s crazy that I feel this way. I off-and-on in my professional life have to prepare presentations and give them. I don’t get nervous about it. It’s just part of what I do. I have also been asked to speak about Noah here and there over the years. He is one of my favorite topics of conversation, so I don’t mind, and again, don’t get that nervous. I just kind of do it. But man, I don’t know what it is, but with this group, I get old fashioned stage fright all the way. I really tried to pay attention to it this time and examine why I feel this way. Here’s what I think is going on.

I am scared of what I don’t know. I have studied up on this stuff a lot since Noah died. I have studied all about his illness, about the newborn screening system at large that identifies MCADD, the process involved, and how it all works. I know more than the average parent about this stuff by far. As hard as I have researched it, I will never be a molecular geneticist or biochemist. That’s who sits on this committee. They are the best and brightest in this field, and have been doing it for years. That is intimidating to go up against!

I am scared about my unintended short-sightedness. Is what I am asking for reasonable and appropriate? Will I fix my problem, but cause a half a dozen others that might put other families at risk? Am I just being stupid here?? I try to go in and listen hard and take to heart what any naysayer has the courage to tell me either directly or indirectly. How does it run up against what I know to be true? Do I need to adjust my argument or proposed solution? Do they even want my input? Or not? How do I fit in here? I try to be thoughtfully aggressive on my issue. Nothing will happen if I am not Chinese water torture on these guys. I just want the policies to be smart and well thought out, and pray, pray, pray that my limited knowledge is enough.

It makes for a nervous situation, constantly re-evaluating how I fit in with this crowd. The Save Babies ladies are amazing at reminding me again and again that parents simply have to be part of the discussions that this group have. Decisions cannot be made in a vacuum by a bunch of scientists sitting around a board room table. Talking about it all in a very cerebral fashion like that, and actually living and breathing what is decided upon are two very different things, and as a parent, I am uniquely qualified to offer that perspective. At a logical level that makes absolute sense. At a heart level, I still doubt I have it in me to be that person, that parent. And yet, here I am doing it for better or for worse. I know that what happened to my son was wrong. He should still be here, living, breathing, growing. I have to hold on to that and keep pushing forward.

So here’s how I thought that it went:

I look on the agenda, and I know that my spot is coming soon. I had carefully written a speech and practiced it many times so that it felt comfortable rolling off my tongue. But yet, it is almost my turn, and my heart starts beating like I have run a marathon. I have to focus on slowing down my breathing. There is no lectern to hide behind. It will just be me in this crowded room with a microphone. I try to take in my surroundings ahead of time to navigate how I will get up there without tripping. There are briefcases and cords that have been successfully and unsuccessfully duct taped to the floor. Jesus, how am I not going to trip?? Once the lady before me finishes, I try to gracefully get up and make my way to the front. I hold the microphone and my speech. So crap…both hands are each coordinating something. That’s not the best, but whatever. My knees are shaking. I am wearing a knee length skirt. Can they see my knees shaking? I start to read, and realize that to my ears, there’s kind of an echo between what I hear in my own voice, and what is coming out of the speakers from me speaking into the microphone. It must be a function of where I am standing in the room in relation to where the speakers are. The last lady sounded fine and not echo-y, so it must just be my experience. I have already started, and I have to keep plowing forward through my speech. I just have to try to stop focusing on what I am hearing, and focus instead on just getting through my speech. I hope I practiced this thing enough that I am getting the right inflection in my sentences the way I wanted. I hope it isn’t so freaking obvious how nervous I am. I finish. The chairperson asks me a question or two; simple ones thankfully. Nice to meet you, and will you be coming to the subcommittee meeting later to hear more of the discussion on this topic. I thank him and reply that yes, I will be there. I hand off the microphone to the next person. I am now free to go sit down. I am shaky legged, but make it to my row before I trip a little on someone’s stupid briefcase. Really lady?! Thanks for leaving your crap in the middle of the row. The people sitting next to me are comforting me and saying I did great. Take a deep breath. Lord, I feel like I screwed that up. Sorry Noah. I feel terrible I couldn’t do better for him. Damn.

Here’s how I think it actually went:

At the breaks the rest of the day, as well as the next day, there is no shortage of people hunting me down to introduce themselves and ask further questions. I feel like they are doing it because they feel sorry for me. I keep blaming it on the morning sickness in a desperate act of self-preservation. But then, a couple of people unsolicited, tell me that I am an eloquent speaker and ask me what my day job is and if I do lots of public speaking. Really?! Surprised at that. Really surprised. I am hopeful that I actually did pretty well, and all that stuff was just in my head. I am sure some could see right through me, and knew how scared poopless I was. Though, for most, everyone was very kind and eager to learn more. At the end of the day, does it matter? The goal is to move the needle forward, and if I have swayed a bunch of folks to help me for whatever reason, then who cares, right? So, I think I actually did much better than I thought.

By the end of day two, I felt like I had accomplished a lot. As you can see, I was pretty emotionally drained, and eager to be by myself to process. My hotel wasn’t the one right next door where everyone was staying. It was one metro stop away, and I am so glad. No bumping into people in the lobby. I can isolate and get myself together.

This was kind of a unique visit. I was expressly asked to come this time to share my thoughts on how I think they are doing. By in large, I tried to just say “thank you” over and over. Thank you for having me. Thank you for your hard work. Thank you for working to address the issue. I did have some tough stuff to say, and I did, in fact, say it.

  1. They are working to develop best-practice guidelines for the timing of how and when the newborn screening process happens. I am all for cleaning up this stuff, but the problem is that lots of groups have best practice guidelines that address timeliness. They all fall flat when it comes to enforcing them. It is no good to just post their document on a website and adopt the usual “if you build it, they will come” philosophy. I told them that that is only getting the job half done, and they need to think about how to keep it front and center in hospitals and lab’s minds.
  2. They had mentioned at the previous meeting the idea of approaching what’s called the “Joint Commission” to see about putting best practice guidelines in their stuff. The Joint Commission is the large accrediting body that oversees all hospitals in the United States. If they set forth a guideline on something, it is followed to a “T” by hospitals. If they fail to do that, then they lose their accreditation. It takes an act of God to get a guideline put in their book, but this committee at the health department is the group to do it. I asked for an update on this. Also, this step only addresses half the issue. State labs mess up too, and were the main culprit in our story, since they were closed on the weekend when we needed them most. I asked what comparable activity they were doing to make hard guidelines for labs, and not just focus on hospital policies.
Regardless of what they do on points one and two above, I think I have a good solution, and tried to talk to as many of the committee members about it as possible. The Milwaukee Journal Sentinel built this amazing database of hospitals across the country, that tells everyone’s turnaround times on newborn screening tests for 2012.  If one of the organizations on the committee took this project over (I recommended the Centers for Disease Control, and everyone agreed that they would probably be the best ones to do it), and make the database open to the public, it accomplishes two goals:
  1. I am a pregnant mom with a child at high risk of having MCADD. I would love to use a database like this to shop programs in my area to see who is going to be the most aggressive at catching the illness. I should have access to something like that.
  2. On the flip side, it provides a pretty clear roadmap to who needs further training to improve turnaround times.
It should be expanded to cover not just hospital data, but state lab data as well. Transparency – these guys knowing that they have to share this data publicly on a regular basis – would hopefully naturally cause them all to be more clued in on how they are doing.

Big fingers crossed that the committee gets it and pushes this idea forward. We will see. All I can do is put it out there to the right folks and see what happens.

The next meeting is in September. I will be too pregnant to travel by that point, so I will see if I can do it through the webcast option. It certainly isn’t as powerful as actually being on site, but it’s the best I can do.

This is such a wild and crazy experience filled with lots of emotions, but man, I just have to get over myself and do this for my boy. Again, I found myself at the Lincoln Memorial before heading to the airport. I stood there in the crowded gallery, and cried my eyes out while reading the Gettysburg Address just like the last time I was in Washington DC, advocating for Noah. All that stuff in there about how people died so that others could live, and how those of us left behind have to take up the charge and keep pushing the mission forward so that the loss of life wasn’t for nothing…it always gets me. What a powerful grief statement, and so validating after a couple of days like this. That is 100% why I put myself and my family through this. To protect my soon-to-be new baby and know that the system responsible for maybe saving her life will be there doing what they are supposed to when I need them most. And, to give other families the options that I didn’t have. They will never know that I have done this for them, but I don’t care. These kids deserve to have a fair shot at life with all the tools and information that they life-or-death need to have about their health. Thinking about those things makes this so very worth it. Not done yet.

Thursday, November 21, 2013

Found Some New Heroes

I wanted to share an amazing amount of care and research that has been spent on taking a closer look at the tunraround time of newborn screening test results. Noah died as a result of some bad policies that delayed us knowing about his illness in time to do anything to save his life, and so this is 100% something that I fight for in my advocacy work.

About five or six months ago, a story came to us via the Save Babies Through Screening Foundation, where I am a member of the board and a volunteer. A baby in Wisconsin had been born, and when he was a few days old, he and his parents lived the same nightmare of a night that we did with Noah. The baby went into crisis for some unknown reason, and had to be rushed to the hospital. Unlike our story, their child survived due to some incredibly radical procedures, and forward thinking doctors. Unfortunately, he is now permanently brain damaged. Soon after this experience, his newborn screening test came in, indicating that he had a rare genetic disorder could have been easily treated, if only the parents and doctors had known about it.

The local news media in Wisconsin became involved, and launched a detailed and thorough investigation of the issue at large. Because we have lived this nightmare, they wanted to hear all about our story as well. I am so eager to get the word out so that I have some traction when I go and lobby in Washington DC, so of course I was eager to share it.

It has been an amazing experience start-to-finish. These guys have dug up answers that I never thought I would have. It has been validating, humbling, heartbreaking, healing and so much more. I am so very pleased to share the results of their hard work, and can't thank the Milwaukee Journal Sentinel enough. Everything was very thoughtfully and carefully done, and I am so grateful.

There are a whole series of stories, maps, databases, etc: Deadly Delays: A Journal Sentinel Watchdog Report

Our story can be found here: Lack of weekend hours adds delay, putting babies at risk

Or you can get the shorter version through this very cool video they did of us:

Friday, November 15, 2013

Hard Story To Tell

Dilemma. Meeting new people is hard. It didn’t used to be that way. I have grown up having to be good at meshing with new groups of people. I can network my way around any group of strangers and find my niche of people who fit the best as good friends. It is a talent you have to learn fast when you grow up moving and moving and moving. You can either stand there looking scared in the high school cafeteria wondering what to do next as the new girl, or you can plunk your tray down at the most promising looking table and start talking and acting like you have always been there. The best survival tactic was always the latter. But add a new wrinkle to the new girl scenario. I have lived tragedy. It is a huge part of who I am. You have children and they change your lives forever. They are your heart and soul, and teach you more about love than you ever thought possible. Even if your child has died this is true. I believe deeply that I have two amazing sons. I refuse to deny Noah. He existed, mattered, and is one of the most prevalent thoughts and feelings I have, even though he isn’t physically here. I will say it again: I have two sons. To know me is to know them both. To only have half the story means you aren’t really a possible friend. I want the world to authentically know me. Some can handle that information and some can’t. So how do you judge that in a new group of people? Those that can handle it, and those that can’t? What do I say? Am I the “Debbie Downer” of the group because of this sad story? What a pickle. I debate every time. I hate that I am depressing. Why is this my life? That I own this? But he was and is one of the greatest loves of my life, and family comes first right? Sigh. I survived this round, and walked out having met some great people. I just wish I didn’t have the fear and internal debate. I wish I could just be free and clear. Just be the girl who plunks down her tray and talks like she has always been there. That was easier.

Friday, September 20, 2013

Big win in Washington DC today, and I am so excited!!!!!!

I realize this is all really complex stuff, so to reorient you with our story and what I fight for, Noah died of a rare genetic illness that was 90% treatable. His diagnosis came in from the state health department the day after he died. Obviously, the system is broken if it takes too long to turn around vital life-saving information like this to parents.

I have spoken twice in Washington DC in front of the appropriate committee, and both times I was pretty much blown off. I went into today’s speech with a bit of a bad attitude expecting the same thing, but due to some other irons I have in the fire on this issue, I just knew that I had to do it again, and would probably keep doing it and get the same result. Crazy, huh?

I prepared my speech, and delivered it with some jangling nerves. This is a scary group of people! Much to my shock, there was discussion afterward! Three people on the committee discussed it, including the committee chair, who tasked the Centers for Disease Control (CDC) and the Association for Public Health Laboratories (APHL) with being prepared to research and present on the issue at the next committee meeting in January!!!!

So, what does that mean? Basically, the CDC published a document in 2012 that has their best practices and recommendations for newborn screening programs in the United States. You can find the full report on their website. It’s a big fifty page booklet of guidelines. I saw them present on it at the first DC meeting I ever attended a year ago, and was excited to see that they part-way address the issue (it definitely needs to be beefed up). I had a great conversation with the CDC representative about it afterward, and asked her about expanding that section. They didn’t have plans to do a revision at the time (the report was brand new at that point), but with this change, they might be pushed to do it.

Either way, at the next committee meeting in January, these folks have to be prepared to research and speak on it. I have, of course, researched it extensively myself, and I hope they are open to speaking with me on what I have found to be true. I definitely plan on reaching out to them. Sometimes these guys aren’t so open to working directly with families. That is definitely true of the APHL, but the CDC folks have so far been great when I have spoken to them before. We will see.

BIG PRAYERS that they don’t do a half-baked job. I plan to keep pushing and speaking as much as I can. I hope we end up with what I want, and what I feel would honor Noah’s life and bring meaning to our loss. Other babies are at risk in this country, and they deserve the fighting chance that my son didn’t have.

Thanks for celebrating this win with me! I am on cloud nine over here!