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Longing for the day

I sit here at my desk, my head and my heart full of worry, concern, and prayer. Friends’ children are sick…..really sick…..hospital type sick. And it breaks my heart. I wish I could be there with them, offer help in any way. And I long for the day when we don’t have to live in fear anymore……

I long for the day when a runny nose doesn’t send panic into my heart. I long for the day when a cough is just a tickle in someone’s throat. I long for the day when a cold is just a cold, and not a reason to run for the “rescue inhaler”, peak flow meter, telephone, dr’s office. I long for the day when my son can just be a little boy and run like with wind without wheezing, play soccer and baseball without his meds on stand-by, not be medicated day and night.

I know I’m whining. And I know I’m preaching to the choir. Ryley started really coughing yesterday. Instant panic set in. We felt so lucky when we left the NICU with our baby boy. I think I was living in a bubble, an unreal world where I thought my baby was “normal” now. Prematurity doesn’t leave. And it often sneaks up on you when you have just let your guard down. I feel guilty that maybe I didn’t take better care of my son when we brought him home. We just didn’t know enough. We didn’t have enough tools. We were so lucky that he managed to stay relatively healthy, at least until last year when his prematurity reared its ugly head again, and the results of his early birth came out to fight. We’ve fought this particular battle for over a year now. That’s not much, and I feel awful for even complaining when I know so many more preemies have so much more to deal with than Ryley does. But it’s all relative, as the saying goes. I know more now. I have more tools now. I have you all now. But I’m still afraid. Will he grow out of it, or won’t he? And I long for the day when I don’t have to be afraid of this anymore. I don’t long for “normal”. We left that behind the day I was admitted to the hospital. But I long for the day when a cold is just that……a cold.

6 thoughts on “Longing for the day

  1. Oh Donna – how I feel your pain. I was just telling my husband the other day that I’m so jealous – so jealous of the moms who get to take their kids to the mall to ride the carosel. So jealous of the mom’s who have their kids in different programs during the winter – and Leighton can’t do that.
    So tired of seeing a runny nose and thinking “is this going to be the bad one”? I’m with you. Michele said it perfectly. The NICU roller coaster doesn’t end when you leave the NICU. If only it were that easy. I’m so glad I found Share – and you. Noone else would ever understand the things we preemie parents worry about. Hugs!

  2. I think every Mother wants for their child to be healthy…. even the Mother’s to full term babies… this world is tough and there is so much to worry about out there. You are a good Mom to worry…. I guess the best anyone can all do to protect these little ones is practice good handwashing and pray that they will be well. I’d like to be able to tell you that your little one wil out grow it but I’m 33 (who was once a 28 week preemie) and still have a terrible immune system. I have allergies which cause my asthma and sinus infections…. if not treated quickly it turns to bronchitis or pneumonia… I’m getting pretty good at catching my symptoms early and usually don’t get as sick as I used to. Is Riley on Singulair? That stuff has helped my allergies and asthma so much… they have it for kids too. My prayers are with you that he will be ok. Take care Hugs from me

  3. Donna… You are *so* right. It seems so unfair that we have to worry about a snotty nose…..an unexpected sneeze….or a meal not eaten. Because…to most kids…there could be any number of reason for it, and none of them serious. For our kids….we treat it like it is serious until it is proven not to be….Some call us neurotic…I call us being safe…. There is peace and joy even in this though…Because of our preemies we have connected with wonderful people….formed an awesome group of supportive friends…and know that no matter what happens…..we always have someone….somewhere….that will help us through it. Not many people with full term healthy kids can say that….I expect….HUGS! Today was a hard day … many of us were worried…. but it is a nice feeling to to care so much about the friends we’ve made that we care about their children as if they were part of our family. Hugs! Melissa

  4. Donna, I so long for the day when a PoP says *my child has a cough*…and that’s that…and it’s never more than that…and no worry comes out of that…that the *cold/flu* is JUST that…not an expected doctor/hospital visit…but just a common illness among people!! I so long for the day when PoP’s can play with their children like *normal* and not worry about the germs others are harvesting!! I’m with you…..what a glorious day that will be!! Share is such a great place, and my heart aches every time I hear one of your sweet babies are sick, or even starting to get sick, because I know what it can lead to…from learning from y’all!! Y’all teach me so much about prematurity…and it has made my fight against it that much stronger!!! Hugs!!!

  5. Donna, Oh how I know where you’re coming from… how WE all know exactly where you’re coming from. We’ve all been so worried these passed several days… almost a week now. We’ve all prayed ten times over… Please, God just let it be… watch over this child, keep him or her safe!! Amidst all of this worry, the shining star, the silver lining is this. We all know just where to turn to… until we feel safe again. And then we know just where to turn to celebrate!!! I’m so grateful to have you, and I’m grateful that I can be here for you.. to support you, walk this journey, and celebrate each and every milestone!! HUGS!

  6. I second everyone here. We all long for those days, too!! I was literally nodding along with your thoughts and sentiments. Thanks for putting words to some of our feelings! Hoping Ryley is feeling better. Kara

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