Maggiepaws

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,
Mom

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,
Mom

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.

Love,
Mom

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!

Washington DC Speech - Sept 2013

Thank you. I’m Sarah Wilkerson. I am here to speak to you today as a mother, and as a member of the board for the Save Babies Through Screening Foundation.

As some of you already know, my son Noah died at a few days old from undiagnosed MCADD. His diagnosis came in a day after his death – too late for my husband and I to be able to do anything to save him. Upon further investigation, we learned about a number of delays that are allowed for in the current system in many states across the country, and I urge you to consider creating clearer guidelines for how test samples should be handled, so that babies like Noah don’t slip through the cracks.

These guidelines would include:
  • Limit the window of time that hospitals have to take the initial blood sample to 24-48 hours of life.
  • No longer allow the use of the US Postal service to send in samples. A courier service must be used. As many as 16 states still allow for snail mail. This adds a couple of unnecessary days to the process right there.
  • Prohibit batching, which still happens in the more rural areas of the country where less is known about newborn screening. Better education in these areas is sorely needed.
  • Encourage labs to use their funding to keep the labs open on Saturdays. Or, at least vary shifts in the lab so that it is continuously staffed. 26 states are completely closed on weekends, and babies are born every day of the week, regardless of weekends or even holidays.
There is time and emphasis from the committee spent on treatment options, education and so forth, but the prompt turnaround of newborn screening test results is so important to consider as well, since without proper identification of these illnesses in a timely fashion, all of the follow-up steps don’t matter.

My husband and I would have given anything to have had the opportunity to care for our son the way that he deserved with the very well established treatment plan for MCADD children. It is our hope that you understand this as well and are willing to empower parents with the life-saving information that they deserve to have about their children in a timely fashion.

Thank you for your consideration.

Tuesday, June 25, 2013

Happy 4th birthday Noah!



Dear Noah,

It’s 9:30pm, and I am exhausted after a long week, but what can I say? You are on my mind. The fact that another year has passed and it is time to write you another letter just hit me like a ton of bricks, and I found myself with the words to say to you here on the anniversary of one of the very best days of my life: the day I became your mother for real. I feel like I say it every year sweet boy, but it is still true. I think about you all the time, and love you, love you, love you.

Last year was so hard on your birthday. Our side of town was on fire, and Dad, Aaron and I had to pack up in a hurry and leave. My heart wanted nothing more than to focus on you, but got clouded with the fear and anxiety of a rapidly spreading forest fire. It made for lots of regretful feelings, as well as feeling like I “didn’t get it done” when it came to grieving you like I needed to last year. It was hard. But, I am so grateful that our lives were only disrupted for a week, and that we got to come home, to YOUR home, the one YOU lived in, and somehow or another the year passed, and life moved on for us.

This year, I want to do it right. It is a heck of an anniversary, such a profound time of remembering the incredible highs and lows of experiencing birth and death in less than a week. It is a lot to remember.

You helped orchestrate some incredible things this year. Somehow or another I found myself in Washington DC in front of a scary group of people, holding up your picture and telling them about you, and how you never should have died. Urging them to have care for other babies to come that will be born with an illness like yours. I don’t think they listened. Or if they did, they haven’t done anything. I had to do it for you, to try at least. I had to help your brief life to not be lived in vain, and I think that this is your life’s purpose. As your mother, I want to help you in that so badly. I know we can work together to find a creative way to get there. I am willing love. I will keep my eyes and ears open for where you want me to go next. You are one of my favorite topics of conversation and I will go to any lengths necessary to tell your story.

Aaron is growing so big. I am proud to say that he knows who is brother is. He looks at your pictures and says your name and calls you his brother. He has been my snuggle bug and has filled my arms since you left. Now, he is such a big boy and wants to run off and be independent. It is lonely having those empty arms again. I know that if you were here, you would be doing the same, as you should. It is a natural part of life. But, in my mind you are the four day old infant that I couldn’t put down. It is hard. I miss you, and I miss that feeling.

It is exhausting, living life with a perpetual broken heart from losing you, always having to keep pushing forward, to be a good sport, to swallow it down so I don't make others uncomfortable, to try to act normal when a giant piece of me is missing. This has been a hard season of remembrance. Everything feels like it is pushing me just a little too hard. The fact is that life goes on, and somehow I have to keep fighting to move on with it. You are just not so easy to get over my love.

It is hard to imagine that I have a four year old, and crazier still to think of what life would be like if you were here. Thank you for coming to us, and being our son. We love you more than you can imagine. Happy birthday sweetie.

Love,
Mom

Sunday, June 02, 2013

The Videotape



It’s June. For most that means the start of summer. Warm temperatures that finally let you be outside after a long winter (especially for those of us that live in Colorado). For me, it is the anniversary of one of the very worst experiences of my life, one that will haunt me forever. I try to get into the hope and renewal that comes from early summer, but in the midst of it, the videotape in my mind starts up again, set to repeat, walking me through that night. The night. The night that I had to sit helplessly by in an emergency room, watching my son slip slowly and surely away from me. It hits me without warning. Parts of it that I don’t want to remember. I can’t help it. It’s just there, throwing me through a loop and rattling my senses. I know from other parents that have done this longer than me that the video will eventually play itself out as years pass, but it takes a while. I am four years in, and it still goes. Without warning, my heart, mind and body know what time of year it is, and it starts back up again. I don’t have to look at a calendar. Somehow, inherently I know. I am raw, short-tempered, and anxious. I have to work harder to take care of myself and use the tools that I have learned over the years. I am fighting to stay on top of what I need to get through. I just miss him. Terribly. I wish my life were different. I wish I didn’t have to experience these flashbacks at random times constantly. Trying to hang on and just get through this month.