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Giving hope

Please know that this blog comes from the heart and is meant with the best of intentions. Sometimes I feel like I shouldn’t blog or write some of the things I do……Yes, we had a 26 weeker, but he hasn’t faced many of the issues that some other preemies have. So, take this with that proverbial grain of salt, and know that my heart is with all of you and your children.

Five and a half years ago, I couldn’t imagine Ryley running. I hoped and prayed that he would survive, and dreamed of the day he might do things that “normal” kids do. Five and half years ago, we were in the midst of our NICU journey. I wondered if we’d ever even get through one day without Ryley having a brady. I wondered if the small brain bleed would get worse or would go away. I wondered if he would see, smell, hear, touch, walk, speak. I wondered if we would ever go home. Some days, I feel VERY far away from those fears and worries. Some days, I can’t seem to get away from them. Five and a half years is a long time. It’s also a short time in the grand scheme of things. But it’s long enough to know that my son does see, smell, touch, hear, walk, and speak. It’s enough to know there is hope. It’s enough to know that maybe part of why we went through what we did was to take something from it and pass on hope to others.

I will never forget meeting parents of a 26 weeker getting ready to go home our second week in the NICU. I found it hard to believe we would ever get there ourselves. Right before we left, our neonatologist introduced us to some new parents of a 26 weeker who had just come into the NICU days before. We had come full circle. I feel like we’re still doing that. I love meeting parents of “older” preemies who have made it…..struggled, survived, succeeded, whatever the results of their prematurity had been. I’m not an expert on being a preemie parent. I struggle. I wonder. I worry. I watch, ever so closely watch.

Right now, I’m in a cycle of hope, and of worry. Ryley is playing t-ball. Five and a half years ago, I didn’t know and doubted in my heart that we’d ever see this day……the day he would hit the ball and run to first base…….the day I would yell at him from across the field to stop digging in the dirt around 3rd base and pay attention to the game…..the day I would see my son throw that ball from the pitchers’ mound to first base…..the day I would see him take joy in playing the game. On the worry end of things, Ryley’s knees have been bothering him again. It’s gotten progressively worse over the past year. I worry…..is this the result somehow of his prematurity? Is there something else going on that I need to stress over? Is it just because he’s growing so quickly? And now I have TWO limping boys in my house. Ryley has been limping since Monday. He says his heel bothers him. Doubt crowds in. Do I haul this one to the doctor too? Demand some kind of further testing to ease my paranoid preemie mom mind? Subject him to stress so I can relieve my stress? And I wonder if we haven’t somehow gotten away with something over the past five and a half years….that things were too easy, too easily recovered from, and that it’s going to come back and haunt us at this stage in the game. The asthma thing was kind of expected….it still hurt when he was finally diagnosed this past Fall, but somehow I knew it was coming, and we learned pretty quickly to deal with it.

I’m sorry if this seems scattered. I HAD a clear picture of what I wanted to write about today, but as sometimes happens when you’re journaling, your real thoughts and feelings have a tendency to come to the surface, and fight their way onto the page. I wanted to give hope to those early in the journey of preemiehood. So, here is a picture of Ryley in his t-ball stuff……hard to imagine that this big boy was once wired to the hilt, and couldn’t even remember to keep breathing on his own!

Ryley-T-Ball Yankees apr06

7 thoughts on “Giving hope

  1. What an adorable picture, Donna! Seems parents always will worry about their children, preemie or not, that they are growing up healthy, happy and doing the right things. I don’t think it’s abnormal at all! Your doinig an amazing job. Keep up the great work! Hugs,

  2. LOVE the picture Donna, he’s adorable. What a sweet smiley boy you have. I think it’s great that he’s doing the things he does and is able to play t-ball and be a “normal” kid. There is nothing wrong with wanting those types of things for our children, we have that right. You have always and continue to give me hope. Hugs,

  3. Donna, Ryley is a beautiful, energetic boy…full of boy wonder!! I am so glad, for you & your family, that this five and a half years have come so full circle for you. I am so glad Ryley is living the dream you had for him at this age. How proud you must be. And yet, you wonder about that proverbial *other shoe* dropping? I think it’s something every preemie parent deals with…and I don’t think you should ever apologize for talking about your Ryley. You said you feel bad as he hasn’t had some of the other preemie issues, be glad in that. Be glad you didn’t have to endure as much as others, we all know you love the Share babies, all of them…without question, whether they’re brand new, still in the NICU, became angels, having lots of preemie issues, or doing well….you show your love to all of them on Share daily!! For that….please do not be sorry!! We love you Donna….you are a great mom & should be proud. About his knees, I say go with your *momma gut* instinct!! It’s not proven anyone wrong yet!! Hugs & lotsa love!!

  4. Again, LOVE this picture! Go Yankees!! Not only is Ryley running, he is hitting, sliding, swinging…. playing T-ball! What a typical, normal little American boy (or girl!) thing. What he SHOULD be doing! Most certainly something to celebrate!! Kara

  5. Donna –
    I know I said it before – but I love the picture! What a grown up looking boy! About the knees…I’d go with your gut. And if they say it’s nothing – then fine – you at least know. I always feel like “better safe than sorry”. Jump for joy that he’s doing things all other boys his age are doing. That makes every preemie mom proud! Denise

  6. Gosh! Again, Ryley is such a cutie! Donna …. have his knees checked …. tell his ped about it …just to be safe … and if there is nothing wrong .. then there is nothing to worry about … I am so proud of you and of Ryley. prematurity is a family thing. So often …. we just think about the kids … what they have been through … how they are dealing with it all … But parents suffer a great deal too …After all … we’ll remember things that our children never will because we were by their side the entire time. You are a great hope and inspiration to me and to other parents with preemies. We’ve become friends … I care about you and your family … and as life moves forward … I am sure you will develop numerous friendships with parents who have preemies … and they will be so grateful for you. You are a mother of a preemie. You have every right to share your child’s triumphs! Hugs!

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