Letter Nineteen 

 January 16th 2008

Chip, 

You are the best nurse I have ever had. When you came on shift last night things were so intense with Noel. They couldn’t get her breathing settings right, they couldn’t get an IV placed and her labs were all over the place. I was so scared and overwhelmed. The room was full of so many people and so much commotion. I was about in tears from all the emotion and stress, I had been up for 36 hours by the time I met you. You came in the room with so much peace and clam. Before you even said anything to me I knew you were a great nurse but how you interacted with Noel. You spoke straight to her and acknowledge her even though there was so much going on. By the time everyone left the room it looked like a tornado had gone through. There was equipment, and supplies scattered everywhere. Then you came through like a Tasmania devil of organization rather than destruction. You tidied everything up. You made the room feel so warm and inviting. You gave Noel a bath, bundled her up and basically put a bow on her. She looked so snug and content. In-spite of her having a breathing machine covering her face you made her look as comfortable as possible. My mamas heart was so full looking at my baby going through so much and in so much turmoil; and yet she looked so comforted and so well taken care of. It’s a real gift to be able to walk into a room and uplift it by your spirit. I appreciate you so much and the care that you’re not only taking care of Noel but in turn taking care of me. Thank you, 

Tina 

Letter Eighteen

January 14th, 2008

Carol, 

The scariest thing just happened. It was 4 in the afternoon and I feel asleep for like 30 minutes I was in the deepest sleep ever because I don’t think I’ve slept in 3 days. It’s so hard to sleep in a hospital. People are in and out of the room every couple of hours. Not to mention the insistent alarms of Noel’s. She has a pulse ox that measures her oxygen level, and monitors for her heart rate and breathing. They never actually pick up correctly so there always going off. 

Well in this sleep I felt like I was out of my body or something, it’s probably from complete exhaustion. But then what brought me back was the alarm going off nonstop. It took me a second to actually come to and when I did it said Noel’s Oxygen was 62. I jumped up and ran over to her half thinking that the monitor fell off. When I got to her she was blue. The monitor was working, but Noel’s lungs weren’t. I yelled out the door to have a nurse come quick. 

That’s when the whirlwind began and didn’t end until 3 AM. In minutes there were at least 15 people in Noel’s small little Hospital room. Nurses were trying to place IV’s and trying to draw labs. Respiratory therapists were in the room discussing what would be best for her. They fit her for a bi-pap, a mask that goes over her nose in order to push air into her lungs. Shortly a ventilator showed up in her room. Pulmonologist came in to consult. Seriously I saw more people in about 15 minutes than I had all day. I was so worried and scared as more people showed up and more equipment showed up.  

Then the decision was made to transfer Noel to the Pediatric Intensive Care unit at about 9:00PM. She had been on the bi-pap for several hours but she was not improving, she was actually getting worse. All of blood work was showing that she was building up more CO2 and working harder to breath. 

I was so panicked as I quickly packed all my stuff preparing to head down to ICU. Noel has never been in ICU so I had no idea what to expect. When we got downstairs to the ICU it was like we were in another hospital. The rooms were twice as big and full of windows. Clear glass sliding doors replaced the regular privacy doors on the main floor. Every patient in the ICU has only one nurse and they sit right outside of their room in order to keep a close monitor on the patient. I felt like I entered a whole new world. 

Everything felt more serious and intense down here. I could tell from my surrounding that Noel must not being doing good to have been transferred down here. I feel so unsure and uncertain right now. This is all new to me. And poor Noel, she is working so hard to breath. Her poor little body is so fatigued and so worn out. I’m sitting on the little bench in her room as I write this. I still can’t sleep and now it’s because I’m full on adrenal and uncertainty. I don’t know what’s coming next. 

Tina 

Letter Seventeen

January 10th, 2008

Heather, 

Hey Friend how are you? I feel like I’m always writing people with bad news and I hate that. I guess this is the chapter of my life that is the hardest with the most trials. I sure hope the next chapter is full of happy experiences and ponies! lol. But I use writing as my therapy as I navigate this crazy ride Noel and I are on.

The last few months have been uneventful, I suppose. She has been eating fairly well. She doesn’t throw up anymore so that’s good news. Thanksgiving was spent with her dads family and Christmas with mine. Nothing big has happened with Noel’s health until now. 

We came to my parents house last weekend to participate in an MDA Muscle walk. I was happy to meet some other families who have children with conditions similar to Noel’s. Sadly we never made it to the walk that was suppose to take place on Saturday morning. Instead I had to bring Noel down to Children’s Hospital. 

I knew she needed some oxygen at least. She started looking a little dusky and was working hard to breath. Then she got really lethargic and could barely stay awake. These were all signs that she needed oxygen so I knew I had to take her in. When I started packing an overnight bag my mom asked me what I was doing, “Doesn’t she only need oxygen Tina?” “Mom,” I said, “ you can never be to prepared for a trip to the hospital with a kiddo like Noel.”

It’s a good thing I packed that bag. We waited in a room in the Emergency Room for 13 hours! When a room finally opened up it was 3 in the morning.  They have Noel on 2 liters of oxygen which is the most she’s ever been on. They also started monitoring her carbon dioxide levels and they said they were dangerously high. So the plan is to keep her on oxygen while we wait for the cultures to come back to see if she’s sick. So for now I’m sitting in a little Blue Chair in room 604 of the hospital while we wait. 

I hope you’re doing alright, hopefully the next letter I send you will be about happy times, after Noel’s back home. 

Love you Friend, 

Tina 

Letter Sixteen

October, 15, 2017

Veronica, 

Finally there is hope! Someone finally heard me out and realized that Noel never got a Nissan when they first placed her g-tube. I went to see the specialist at Children’s Hospital and they finally listened to me. A Nissian is where they change the the function of the valve in the esophagus. It takes it from a two way valve- where food can go down and come back up; into a one way valve so that only food can go down and nothing can come back up. I don’t know why this procedure wasn’t done originally because in most cases when they place a g-tube they also do this procedure. The good news is they didn’t do it for Noel, so this is probably why she’s been having all her feeding issues. So the good news is she is scheduled to have this procedure next week right here at our local hospital; we don’t have to travel!

Update: 

So the procedure is done and Noel is resting. But, unfortunately we are not at our local hospital, we are at Children’s Hospital again. I am so mad and frustrated. I had talked with the surgeon, who was suppose to do Noel’s proceed back home, at length about her muscle disease and making sure that he and his staff would be able to adequately care for Noel. He kept reassuring me, almost to the point where he was getting annoyed, that everything would be fine. I was just extra concerned because every procedure she’s had at children’s they were extra cautious with Noel. So the morning of the surgery we are in the pre-op room and the anesthesiologist comes in and says, “I don’t feel comfortable putting Noel under anesthesia. I just found out about her this morning.” He said he had never worked on someone with the diagnosis of Muscular Dystrophy and there could be serve complications putting her under. He said, “if she was my daughter I wouldn’t want me to preform this surgery.”

I was so mad. This is exactly what I was trying to avoid and what I was trying to communicate to the surgeon about; but he wouldn’t listen to me. After the anesthesiologist left the surgeon came back in the room with his “tail between his legs.” He knew that he had been disrespectful to me and that now he was in the wrong. I couldn’t even make eye contact with him. Not only was I so mad that he didn’t take the time to really listen to me, but now Noel wasn’t getting the procedure that she needed so bad. It is so hard to try to advocate for your child to a Doctor who thinks they know everything and that your some uniformed parent. I get so discouraged dealing with this. I didn’t even sleep the night before because having your little 11 month old go into surgery is terrifying and it was all for nothing. 

So thankfully children’s hospital was abled to fit her in yesterday! I’m so thankful that she finally has this procedure done. It means that she’ll finally stop throwing up all of her food and she’ll finally be able to eat and gain weight! It was also nice that Noel was one of the first patients to be seen at the new Children’s Hospital. Its a brand new state of the art building, so if we have to be in the hospital this is a great one to be at. We’re hopefully going to get discharged later today or tomorrow which means we may be able to make it to your bbq this weekend after all!  I could really use some time relaxing and hanging out with friends after the week I’ve had!

Love you friend, 

Tina

Letter Fifteen

August 18th, 2007 

Cassandra,

I’m so frustrated and so exhausted. Noel is 8 months old and her feeding issues have only been getting worse. It’s been such an emotionally and physically demanding job. I have to pump every three hours, in order to give Noel breast milk into her tube feeding. After I do that I get Noel’s tube feeding ready which includes fortifying my breast milk with extra formula so that she’s getting more calories than just breast milk alone.

By the time I get her tube feeding hooked up and going it’s already been an hour long process. The food takes about an hour to get done. Then, not even 15 minutes later Noel throws up half, if not all of the food I just gave her! After cleaning it up I basically start the whole process over. It’s exhausting and all consuming.  I’ve tried everything I could think and everything the doctors have told me to help her not throw up. But nothing works!

The doctors have told me I lay her down after she eats, that doesn’t work. Then they say sit her up at a 45 degree angle, that doesn’t work. Last time they told me to trying feeding her when she’s sitting up, even that didn’t work. No matter what I do she ends up throwing up everywhere. 

It’s so challenging and frustrating. I can’t even take her to the store let alone to someone’s house because I don’t want to have to clean up the mess in public. I feel stuck and trapped in my house. No matter what I tell the doctors they don’t have any other options for me. I am so discouraged right now. And I just don’t know what else to do. We are suppose to see a specialist next week so maybe they will have the answers?? I sure hope so because this is so difficult. Thanks for letting me vent. 

Tina 

Letter Fourteen

May 28th, 2007

Sarah,

I need to tell you thank you friend for being with me today. This was such an intimidating appointment to go and it would have been nearly impossible to show up today alone. I really needed your friendship and support on such a challenging day. I couldn’t have asked for a better person to have with me at the appointment today.

On one hand, I woke up this morning  hopeful to find out what is going on with Noel. But on the other hand I was scared to know what’s really going on with her. As we sat in the doctors office waiting for the doctor to come in I knew I  needed to be light hearted and cheerful. That’s because I cried all my tears last night. I thought of all the what ifs, I mourned the worst case scenarios. I know I seem lighthearted and easy going to everyone. But the truth is I feel so deep that it’s actually hard to let my true emotions out to others. 

That’s why today, when the doctor said that Noel was diagnosed with Muscular Dystrophy my response was, “That’s ok she can still be in the special olympics.” I was able to accept it that easily because I have already been imagining the worst case. As much as I was hoping that the results would come back as nothing, deep down I knew. I knew that her condition was more than just a traumatic brith. I knew.

I’ve been preparing to hear these words and today I felt ready to tackle it; whatever it may be. Through sports and adversity I’ve been preparing my whole life for these kinds of moments. The moments when I feel like the world is falling apart around me, and this is my moment to triumph over the obstacle. My optimistic nature also helps. I deeply believe that even in the darkest moments you can find light if only you’re bold enough to look for it. 

However, since we left the appointment, I’ve had a million questions come to mind: Wheel chair? Is that what’s in her future? Oh my gosh how do you even live life with a child in a wheelchair? The only thing I knew of Muscular Dystrophy before this was on Jerry Lewis’ Telethon I watched as a kid, and the fire fighters “Fill the Boot’ for kids with MD. I’m sure I’ll become an expert on this disease soon. The doctor said they were very hopeful and that her low muscle tone only seemed to be effecting her ability to move. 

You know I didn’t ask the question; but I couldn’t help but wonder will she ever walk? I don’t know if I really want to know the answer to that. I sure hope she does. It kinda seemed like they were saying hope for the best but prepare for the worst. She’s only 5 months old, that is so hard to do right now.

So I’m just going to focus on the positives right now. Since she’s had her feeding tube for a little over a month now she is finally gaining weight! They told me, even though we’re using the feeding tube for all of her feeds, to keep trying to have her drink a bottle. They don’t want her to loose the ability to suck or not be able to eat when she is older. I am just so glad that we can now focus on more things than spending the whole day trying to get her to eat. 

Thank you so much for being with me today at one of the most challenging appointments of my life. A friend like you means the world to me. I have no idea what this journey will bring but I’m sure glad I have someone like you in my life right now. 

Love, 

Tina 

Letter Thirteen

April 18th, 2007

Mom, 

Thank you for being here for me today. Everyone has finally left Noel’s hospital room and now it’s actually quite. It has been a whirl wind of a day. Today was the hardest day of my life so far. Having your little baby go into surgery is so stressful. I know that having the g-tube is going to be best for Noel so that she can finally get all the nutrition she needs. It’s been a hard choice to make, but seeing her sleeping soundly and getting feed without her having to do so much work gives me a lot of peace. I’m hoping that now we won’t have to have out life consumed with feeding difficulties. 

I am worried though about the muscle biopsy, the doctor did today. They said they normally wouldn’t do it on Noel since she is so young, but since they were doing surgery anyway they might as well get this done while she was under anesthesia. They haven’t told me what the results of her muscle biopsy could be. They said it’s because there are too many possible diagnoses that they don’t want me to get overwhelmed. They also said parents tend to go research the worst possible condition and that would  just create fear and cause me to be overwhelmed. 

On one hand it would be nice to have a diagnosis so we finally know what the heck is going on. But I also don’t want to give up the hope that nothing is really wrong and she’s going to grow out of all of this. It’s such a challenging position to be in; to want to know what is going on, but to also be sacred of the possible diagnoses. I know we can get through anything, I know I am strong and so is Noel. 

Well I’m gonna crawl into my little sofa bed under the window in Noel’s room and try to get some sleep before the night nurse comes in to check Noel’s vitals. I love you mom so much. I will see you in a few days when Noel get’s discharged. 

Love, 

Tina 

Letter Twelve

April 16th, 2007

Susan, 

Thank you for finally listening to me. I have been telling everyone in the Emergency Department that they can’t send Noel home. She is not ok and  needs help. I need help too. I’ve been trying to do this alone and I just can’t anymore. You are the first person who actually listened to me.

If it weren’t for you I would be sitting at home in a ball of tears instead of in this hospital room with one of the pediatric nutritionist. This journey of Noel trying to gain weight has been exhausting. I am still trying to feed every 3 hours, then pumping and trying a bottle of formula all to no avail. The only reason I’m even in town is because I came home to see my family. 

The first two days Noel was doing great, but the last two days she’s been so lethargic and tired. She has even less muscle tone than normal. I brought her here to Children’s knowing you guys would know how to help her. But when they were about to tell me she was just dehydrated and she could go home and be ok, that’s when I about lost it. 

She is not ok! She hasn’t been ok since the day she was born. Of course I’ve been trying to pretend that everything is going to be ok with her and we’ve all just been overreacting. But now I’ve come to the realization that something is really wrong and she needs help! 

I know nothing more about whats wrong with her than when I took her home from the NICU months ago.  Thank the Lord the ER nurse went and found you after my emotional plea about how I couldn’t try feeding her anymore on my own and that I needed help. 

I guess that’s your job though as the Charge Nurse to handle the situations that are out of control. Well things would have been even more out of control if I would have had to leave today with Noel and go home to continue to do this alone.

 I know the nurses mean well, but sometimes it’s hard to not feel like they are just trying to get through their patients and not truly listening to the parents. 

Help is what I came for and now I’m hopeful that that is what I’m going to get. 

Tina 

Letter Eleven

April 13th, 2007

Patricia, 

I wanted to write you a letter of appreciation. You probably don’t even realize it but you have really made an impact on me. Thank you for not making me feel like a bad mom. Noel’s weight is down again this week and yesterday when I called her weight into the Pediatrician’s Office the nurse made me feel horrible: “She weighed what? That’s only point seven of an ounce more than last week, are you sure you’re feeding her every three hours?” 

Well actually I am doing exactly what the doctor told me. I am nursing her every 2-3 hours, pumping and giving her a bottle of breast milk with extra formula after. 

I feel so emotionally and physically drained. I feel like my life revolves around feeding Noel or thinking about feeding her. I am obsessed with the scale and weigh her all the time. I already knew that her weight gain was only point seven of an ounce before the nurse told me. I’ve been stressed about it all day. 

Thank you for just listening to me. I feel like everyone is telling me what I need to be doing but no one is actually listing to me. I didn’t tell the nurse on the phone this, but I think the Doctor took her feeding tube out to early? I know he thought it was the right thing to do and that she was going to gain weight on her own but now I’m worried. I have tried everything I could think of to help Noel gain weight and it’s just not happening. 

Patrica I’m doing the best I can. I feel like it’s my fault she’s not gaining weight so I don’t need a rude nurse making me feel worse about it.  I’m going to take her back to the doctor after my trip to my parents. Maybe the doctor will have something else to try. 

I appreciate the fact that you see me every other week to check Noel’s weight and you know I’m doing everything the doctor is telling me to do. You know how hard I’m trying. Thank you for being at least one person who is encouraging me. 

Thanks,

Tina 

Letter Ten

December 8th, 2006

Dear Juliana,

You just left and I’m still crying. That poem you gave me, “Welcome to Holland;” has unleashed a flood gate of tears I was keeping in. The words of that are so powerful and what is most powerful to me is that I’m not alone in this, not alone in these feeling I’m going through. Reading this poem written by someone else means someone else has felt this exact thing that I do.

I thought I was going to Italy just like everyone else. I had her room all ready, had all the outfits hung in the closet had my diaper bag ready with me at the hospital. I learned how to speak Italian. But when we landed or when I delivered her we were in Holland and not Italy. And like the poem says in Holland you’ll have to get new guide books and learn a whole new language. But also like it says you’ll meet people you would have never met.

You’re one of those people, a public health nurse by day and an angel by night. I wouldn’t have meet you if I wasn’t in Holland. The morning you walked in to my house I really needed someone to talk to, someone to encourage me and tell me I could keep going. When anyone asks how I’m doing I tell them the easiest answer possible, fine. I’m not fine though. This is so hard.

My whole pregnancy I would watch TLC’s “Bringing Home Baby,” a reality show following a Woman’s pregnancy and delivery. In all the episodes I watched, I never remember a family bringing home a baby that wasn’t healthy. Now that I’ve been home by myself for a week I’ve been watching episodes just to see if anyone did in fact bring home a baby who wasn’t healthy. I wanted to see how they dealt with it, if their baby got better. I wanted to be understood, because no matter how many people have told me their here for me and they understand they don’t.

They have no idea that I feel completely and utterly alone. They don’t know that I cry myself to sleep at night. During the day I beg God in prayer for Noel to snap out of it and be ok. So when you brought me this poem it gave me hope, that I may not have met anyone yet who understands, but at least those people are out there, somewhere.

Your sweet spirit and happy heart also helped to set me at ease. My mom is in Denver and hasn’t been able to visit yet so I very much needed your maternal support. I know I’ll see you next week when you come to check Noel’s weight. Thank you again for being such a bright spot in my dark day.

Tina 

Letter Nine

November 30, 2006 

To the NICU Mom in the room next to me,

I’ve been trying to not intrude on your privacy. We all feel like we’re in a fish bowl here. But I can see you in your room and I see your tiny little baby. How did we get hear? This is not what the picture of having a baby is suppose to look like. I guess that picture is gone now.

This place is so scary. I’m always afraid of the news about Noel, every time the doctor comes in I’m assuming she’s bringing bad news. I can’t believe l’ve met other families who have been here for months. How can that be? Every day I wake up wondering when are we going home? 

I feel angry sometimes that we’re here. I feel like I can’t do anything for my baby. I can’t wait until I can just be alone with my daughter. I appreciate all the nurses and doctors who are caring for her, but I just want to go home.

I’m sure you’re asking the same thing. I wonder how long you have been here and what’s going on with your baby. I’m sure it would be rude for me to ask you, so I don’t. But I just feel so lonely and wonder if we could be friends. Friends in this terrible situation we’re in. 

But truth is how can we have a friendship when we can’t leave our babies sides? I mean sure we may pass each other in the hall or sit near each other in the cafeteria, but we’re too full of guilt about being away from our babies to make eye contact. We hardly have any energy to talk; we’ve had to tell the same story of our pregnancy, labor, and delivery a thousands times. 

We’re both probably too full of our own emotions anyway to even be there for each-other. I feel like my emotions are on overdrive, their running wild. This is my first baby so I assume some of this is normal with all the hormones. But the other racing emotions can’t be normal? Every time an alarm starts beeping my heart rate sky rockets. It’s usually just a signal not picking up, but still you never know.

Are you feeling the same way I’m feeling? Like you want someone to help you but you just don’t know what to say? I mean how can anyone help us when I feel like I can’t even help myself. 

Are you overcome by the what if questions? These thoughts are constantly running through my mind: What if she doesn’t make it? What if we have to stay here for months? What if it’s my fault that she’s here? What if she has a permanent condition? 

What are your what if’s questions? I’m sure if I heard yours I could tell you how it’s all going to be ok. That you need to take it one day at a time. Don’t think so much about tomorrow, just get through today. Funny I guess I should listen to my own advice.

Well friend, we’ll probably never actually talk so I’ll just leave you this letter. I just wanted you to know that I see you. I see how hard this is. You’re not alone even though at times you feel like you are. I hope you get to go home soon with your sweet little baby. 

Tina 

Letter Eight

December 4th, 2006

Dear Jana,

I wanted to write you and tell you thank you so much for letting us stay last night. I knew the first night out of the hospital would be tough, but I had no idea it would be that bad. The pressure of taking care of Noel without doctors and nurses is terrifying.

Also I can’t believe they make a laying down car seat! Have you ever heard of that? I guess it’s a life saver though because we wouldn’t have been able to leave the hospital without it. Noel couldn’t maintain her oxygen level sitting up right in a normal car seat.

Last night was the first time I had to make her tube feeding alone, the doctors said they think she’ll get the nose feeding tube out soon which is good because I don’t want to have to do this forever. Even though she’s on a feeding tube I’m still trying to nurse. And what she can’t eat I pump and put it in her tube. I want to do the very best I can for her and the doctors said that will help.

Between the feeding pump and the oxygen I’m always worried I’m going to pull a tube out of her. Thank goodness I could monitor her oxygen though; otherwise I think I might have had an anxiety attack. I’m so glad Noel did amazing and slept great. For the amount of sleep I got, I slept great too.

The clean comfy bed felt divine in comparison to the small hospital chair I’ve been sleeping in. I can’t believe Noel was flight for life-ed here two weeks ago. I’m so glad that pilot let me get on that airplane with Noel, I don’t know what I would have done if I had to drive four hours through the mountains to Denver while she was in an airplane. I still remember getting off the plane, walking into the hospital and around the corner to the waiting room. I was enveloped with love and the familiar faces of my family. The hug you gave me was the best ever.

Also thank you for letting us stay here last week, it was my first time out of a hospital in eight days. I couldn’t wait to take a shower when we go to your house. So thanks for letting me borrow shampoo and p.j’s. I still can’t believe the nerve of someone to steal bags out of the back of a pickup truck parked in the Children’s Hospital parking garage. Some people.

Jana your kindness in hosting Thanksgiving at your house so we could all be together and so that I could take a little break out of the hospital meant so much to me. I don’t know if I even said thank you because being away from Noel made me feel in a daze. But thank you. Seriously, the love of the Lord and the love of family has been getting me through this. I appreciate all that you and Seth have done for us.

Going home without knowing what was going on with Noel other than she has low muscle tone is hard but I know that God is in control and He has bigger plans than I can’t even understand. Thanks sister, it’s meant so much to me. Now I just need to figure out how I’m going to do all of this. I never thought that this would be the picture of bringing my baby home. 

Love, 

Tina

Letter Seven

November 26th, 2006

To the person who stole all of my things:

I guess you had no idea when you walked up to the back of our truck and took all of our things from the hospital parking garage that we were inside devastated by the fact that our daughter is very sick. Maybe in time I’ll come to forgive you but right now I’m just so mad. I finally left the hospital and showed up at my brothers house in order to take a shower, refresh, and use the breast pump to pump some milk for my daughter.

When we pulled up And looked in the back of our truck and realized everything was gone it was like a punch in the stomach. Only thing is, I already feel like I’ve been punched so it was a though I was laying down and you came up and punched me again. I don’t know, maybe you need the camera that has the pictures of my daughters birth.

Maybe you need some new outfits that a post natal mom should be lounging in. Maybe you’re going to pawn off the breast pump to get a few bucks to buy yourself some thing. I don’t know why you did it you must be in a worse place in your life then even I am in.

But I just wanted to let you know your actions were incredibly selfish and thoughtless. Now I’m sitting here in my brothers house away from my newborn baby who is laying in a hospital bed. I have no clean clothes, I don’t have shampoo, you’ve stolen her baby book so I can’t even work on that.

I feel like I’m about to explode because I really need to be able to pump milk to give it to her through her feeding tube. I know we will never meet and I know I’ll never get my stuff back; but I’m writing you to somehow help me feel seen, heard, and validated. I hope for your sake you’ll think about your actions someday, somehow you’ll have remorse and you’ll change your life. Taking things away from others is no way of living a life.

Tina

Letter Six

November 22nd, 2006

Dear Singing Group, 

I had to write you and let you know how much your song meant to me today. Thank you so much, your sweet voices and acoustic guitar blessed me so much. I wanted to share with you how perfect your song selection for me was. I was sitting alone holding Noel in my little blue hospital chair. When I looked up to see your sweet smiling faces I wasn’t sure why you were there.

But then you started singing. You sang the Beatles song “Here comes the sun.” Wow, those words pierced right though the dark room and into my lonely heart.

“Little darling, it’s been a long cold lonely winter” It sure has been a long cold winter both literally and figuratively. As you sang the tears poured down my face. It was almost therapeutic; you guys standing in the doorway, the sweet melody filling the hospital room and me bawling my eyes out.

Before you came to the door I had been sitting and thinking about how lonely and helpless I feel. All day I just sit here in this dark little hospital room. I’m constantly watching Noel breath, paying close attention to all the numbers on the monitors. I barley leave to get food or use the bathroom. Poor little thing is still to weak to even cry. The doctors still have no idea what is wrong with her.

The truth is my long cold winter didn’t just start now, or even when she was born. My long cold winter started years ago. I don’t really talk to anyone about how bad things have been with me and Noel’s dad; I feel too ashamed to even complain.

You see I was already in a season of loneliness when I met him. It was in a dark season of life. My plans to go to a University didn’t work out so I found myself at a community college; funny thing for me is I found absolutely no community at that college.

I grew up in a small town and was an athlete so there was always plenty of friends, teammates and coaches. I also had tons of affirmation and people speaking into my life. After graduation all that was gone. So thats what I’ve been searching for; a community and a place to belong.

I met Noel’s dad at a friends wedding. It seemed like he had tons of friends and a great community; it was exactly what I had been looking for. I can see now that moving four hours away to his town was bad idea. I should have stayed close to home. It just seemed so exciting to move somewhere new with someone new.  It hasn’t been as great as I thought. We’re always fighting, I thought that life was going to be so different.

I was about to leave this unhealthy relationship when I found out I was pregnant. That’s why now I don’t feel like I can tell anyone how miserable I really am. And now on top of it now here I am in the hospital with my daughter. The reason I’m alone with Noel is he had to go back home to work to keep up with the bills. My family would be here but they feel helpless just siting around doing nothing.

So here I am thinking about life. I know my situation isn’t the greatest but what am I supposed to do? If I thought leaving the relationship would be hard before, now it will be even harder.

Oh my gosh I can’t believe I’ve just ramble on to you, you’re strangers. But I guess it was more therapy for me. I really hope the sun is coming like the song says. Maybe this will all be a distant memory soon and we’ll have a more normal life. Thank you again for stopping by my room yesterday, it meant the world to me.

Tina 

Letter Five

November 21st, 2006

Dear Flight for Life Nurse,

I wanted to write you a letter of appreciation. Thank you for being on the life flight with Noel and I yesterday. So many thing changed so quickly that day. The doctors came in our room and told us they couldn’t do anything else for Noel. Noel needed to be seen at a higher level care hospital. They had done all they could for her here, and she needed to go to Children’s Hospital. We agreed and they told us the flight for life plane was on the way to get her.

I was so nervous and so relieved all at the same time. I knew she was sick, but was she really sick enough to warrant a flight for life flight? Then they told me, “We don’t know if you’ll be able to fly with her, it’s up to the pilot.” I started to cry right then. There’s no way I can drive 4 hours though the Colorado Mountains to get to the hospital. I don’t want to leave my little girl. The next hour as we waited for you guys to get to the hospital was full of so much emotion.

When the nurse came in the room and told us that you had arrived my heart flopped inside my body. Will he let me ride on the plane? I looked at Noel’s dad for reassurance, “You’re going to get on the plane Tina, no matter whatever it takes,” he said. We walked down the hallway just as you and the crew we’re coming around the corner. You gave me such a reassuring smile. I was ready to beg and plead, even cry my way on to that plane. The pilot so easily said, “sure you can ride with us.”

Like a well oiled machine you and the crew got everything you needed packed and loaded up in no time. I guess you could tell how nervous and uneasy I was because you looked me straight in eyes and said don’t worry I never freak out and if I am freaking out you’ll know something is wrong. I felt a little lighter after you told me that. We loaded into the ambulance and the EMT handed me a pillow and told me to put it over my incision. He said, “Here hold this against your stomach to make sure it’s safe.” 

On the plane I could barley take my eyes off the isolate that Noel was in; I so nervous. Her tiny little body lay connected to all kinds of cords. I was sitting towards the back of the plane doing all I could to keep myself calm. I don’t remember much of the flight until we started to desend over the mountains and into Denver.

That’s when we hit turbulence unlike anything I’ve experienced before. That little tiny lear jet bounced up and down and side to side. I was having a panic attack thinking we were going to crash. Then I looked up at you sitting in the seat at the front of the plane. You continued to doing your charting, just like you had been doing the whole flight.

Well, I thought to myself, “she’s not freaking out so I guess I shouldn’t be either.” Seriously thank you for reassuring me before we got on the plane. I know you probably didn’t think much for speaking those words, but to me, it gave me so much peace. My life turned upside down the past few days and your kind spirit and quite strength were such a source of reassurance for me. We’re at children’s in Denver now and I don’t know what’s next for us, but I really appreciate you helping get us here safely.

Thanks,

Tina