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A funny, a problem, and remembering

Bear with me, this is gonna be a three parter!

First, a funny…..I have to access my home computer from work in order to get on SHARE every day. For some reason, they have never figured out why I lost access to SHARE from work, but that’s the way it goes. So I access my home computer and then get on SHARE. It workss, slowy and painfully sometimes, but it works. Yesterday, I had accessed, was on SHARE, and working on a blog. Yesterday was also the day our housecleaner came to clean. So, I’m blogging away, and all of the sudden, the period key starts going crazy. I thought maybe something had happened on my keyboard here, and I was trying everything to make it stop. No go. The backspace key here and the period key on my home computer were doing battle, with the backspace key quickly losing. Then I realized…..Maria was cleaning. She had probably put something down on the desk and it was resting on the period key. Sure enough, I got home last night, and our other keyboard was sitting there, pressing down the period key. I just started laughing. Then I thought she must have been freaked out seeing all the stuff going on on the monitor when no one was there!!!

And now, the problem. We survived most of Winter without Ryley getting really sick. He got it a couple of times, but not for as long nor as bad as he had the previous year. So, I was starting to breathe easier…it’s May, the yucky stuff should be gone. WRONG….Ryley started with a runny nose a few days ago. Allergies, no big deal, usually. Two mornings ago, the cough showed up. Yesterday at school, he had a rough naptime, unable to stop coughing. I had him do his peak flow meter last night, and yes, there we were……very much in the “yellow zone”. We haven’t been there since February. Just when you think it’s safe…….Oh well…back on full meds, waiting for that wonderful behavior that seems to go along with full meds for him, and hoping it doesn’t get worse. I can’t really complain….his health could be worse considering……and the meds aren’t really that hard to deal with anymore. He is starting to realize that things are different for him, that a cough isn’t “just” a cough, and that not everyone takes the inhalers, nose sprays, and singular that he does everday. He is getting to that age where being like everyone else is starting to become important. I’m wondering what kindergarten is going to be like……..

When we talk about prematurity and Ryley’s birth, the focus is correctly and understandably on him. He was the one who endured 93 days of the NICU, all the pokes, prods, tests, etc. Very rarely do we talk about what happened to me, physically, before and after his birth. It is shoved to the back burner most the time, something I don’t really let myself examine very much. But I bear some physical scars…..reminders that my life was threatened as well……..When I walked out of the hospital five days after having Ryley, my legs were so weak I needed help walking. I had a staph infection…..I had the worst kind of staph infection you could get. Wow…..seems weird to say that. I could have died from that infection had they not caught and started treating it correctly in time. I had the kind of staph that attacks your heart. In the days following Ryley’s birth, I had much more bloodwork done, I had regular ekg’s and an echocardiogram (ultrasound of the heart), and after many conventional tries was taken down to outpatient surgery to have a picc line put in my right arm so that they could get the antibiotics I needed as close to my heart as possible. That picc line was in for four weeks……for four weeks, I pushed antibiotics into that picc line three times a day…..I had bloodwork (those tobasco bottles) twice a week…..I went to the infectious disease doctor once a week…….All of this was done in the midst of going to see my very tiny little boy in the NICU everyday, recovering from a delivery, and pumping every three hours. I’m not saying any of this to make myself out to be a hero. I’m not, in the least a hero. It is just what happened. And I wanted to say it because it is part of Ryley’s story, and because we are all scarred in one way or another from our babies’ too soon or too sick arrivals. This is me. This is what happened to me. I see that scar on the inside of my right arm every day. Most days, I don’t even think about it. But sometimes I look at it, and I remember………The reason for that scar, that staph infection could have taken me away from my son, could have taken my son from me if he hadn’t come when he did……It is a visual reminder of what we went through.

6 thoughts on “A funny, a problem, and remembering

  1. Donna, First, imagining your cleaning ladies face when she saw that screen….she probably dropped & ran!! Battle with backspace & period…story of our lives, it seems some days!! I’m sorry Ryley’s struggling again…and that now is the time he is learning what it’s like to not be like everyone else…and I know it’s hard on you!! As far as his birth, isn’t it amazing how our emotions, scars, pain are put on the back burner when our child is sick, in the NICU, or whatever…they always come first. Donna, you’re a great mom…and I’m so glad your infection was caught in time and you are okay….and with us on Share today!! Six more workdays!!!!!! hugs, love, and angel kisses!!
    Sharlene

  2. I am so sorry Ryley is sick. I truly am. Sending beams of healing an virtual soup to him. Hugs! And I can *so* relate to the last part of your blog. So very much. Just as you have scars … so do we all … as parents … physically … emotionally … or both. We have them. You cannot have a child born into the NICU without getting them. You are so right! Mothers are often overlooked for what they contributed to the birth of their children. Some women feel so guilty that they don’t want it known they suffered … some may think they deserve it. Some women may say, “well … it was nothing worse than what our baby went through ….” But being a mommy who is very sick … on top of the stress of the NICU …. and then home again home again to take care of a still very fragile child … it can be overwhelming and very difficult at times. I have scars all over my hands and arms ….. from numerous IV sticks. The only scars on hands and feet I obsess about are the ones belonging to my children. I have a c-section scar on across my belly …. The only surgery scars I think of are the ones from the kidlets PDA ligation g-tubes, and surgery on their eyes ….. I had a staph infection that resulted in boils beneath my arms while I was pregnant — at the same time I had a kidney infection that caused severe blood poisoning – I had a climbing fever 104 before it was treated and went down – I was in incredible pain yet did not take anything stronger than tylenol for it …..But the only illness I really think about is the blood infection that killed Alex — and when Donovan had e-coli and listeria at the same time in the NICU …… While pregnant I had sinus infections, yeast infections, and bladder infections … And yet the only infections I give any importance are the ones my children suffered from in the NICU …… I think that mother’s take a beating … they really do …. and then … because we are so grateful for what we have – we think we are being ungrateful when we mention what *we* went through …. I LOVE that you had the courage to share. Thank you. I think you’ve just told many *many* moms out there … “Hey … it is OKAY to grieve about what happened to YOU too. You are a person. It is okay!” hugs! Melissa

  3. Ok I got a chuckle about the first part of the email. We have the pcanywhere software on our computers at work so work can be done by a tech if needed and it was so funny one day watching someone work on my computer while I was sitting there on the phone with him. I had this evil thought in my head to pick up the mouse and start moving it all over just to pick on the tech. Anyhow… to the other part of your blog.. Mother’s do take a beating… you are all some of the strongest people I know. The things you put your bodies through to help your child inside along is awe inspiring… I have so much respect for all of the wonderful Mommies here at Share. I’m glad you are able to be home soon with your little ones full time. I can imagine it will be a fun filled summer for you all. I hope Ryley gets to feeling back to his old self soon. Hugs

  4. What a great blog. You really did go through an awful lot physically before, during, but especially after having Ryley. And that part of the memory is just as important as what Ryley went through. It’s a very important part of the story, and I’m so very glad everything turned out Okay. How scary! Hope Ryley is feeling better. I too have a sense of… well, it’s May… all should be better. I’m sorry he’s not feeling well. Let’s keep our fingers crossed for June! Sending you some *hugs*
    Darcy

  5. I’m so sorry that on top of all the emotional struggles that come with a baby in the NICU, you were facing your own illness. How frightening. You are very right.. these scars do matter, they are a part of Ryley’s and your story. I’m so very, very grateful that you healed, and are okay today. UGH! I’m sorry that Ryley’s asthma has flared up!! YUCK.. I’ll say lots of extra prayers that the meds work, and don’t cause too much trouble for him behavior wise. Hugs!
    Karri

  6. Donna,
    That is too funny about the computer. Good thing it didn’t cause any serious damage and send all of your info into cyberspace for all to see. I have never witnessed someone else ‘taking over’ my computer. I bet it would be freaky to me too. Even if I knew it was going to happen. I am sorry to hear Ryley is not feeling well. I always seem to have a rough time breathing myself during this transition into summer. I have been on all the usual meds plus prednisone this past week. Well I hope Ryley doesn’t feel too out of the ordinary at school. I was always embarassed to tell the teacher I was sick because I didn’t want the other kids to know. Isn’t it amazing how we don’t seem to notice our own personal health issues when our kids are sick?
    If it wasn’t for your scars reminding you of ‘oh yea, I was really pretty bad off myself’. Well, less than a week now. I hope Ryley is feeling much better soon.
    Karen
    Karen

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