Today was one of those days. Somehow things just got overwhelming for C and me. I got a call from OT, (occupational therapy) they saw Skyler in the hospital and now they've scheduled his follow up appointment for April 1. It's at the same hospital where he was in the NICU for two months. When I told C he basically blew up. He said he was tired of everything, tired of the endless appointments, he hates that we have to pay for all the drugs to keep our baby alive. How it's unfair that our baby needs drugs to live. I don't want it to sound like we're ungrateful. We have a live baby, he is perfect in every way, but at the same time he is just not like all the other "normal" babies.
Honestly, this is kind of tough sometimes. I am over the moon happy with my baby, I love him more than life itself and I will do anything I have to do to provide for him and keep him happy, healthy and loved. But sometimes I do feel worn out with the worry, the endless appointments and administering all the meds. Yet at the same time I know full well so many people have it far worse than us, babies with problems far worse than Skyler's, and people whose babies don't make it. But I can't just sweep it under the rug and pretend like this is easy, yes he is alive and he is "relatively" normal, but he currently has 5 specialists to see, a cardiologist, a neurologist, an endocrinologist, an occupational therapist and an opthamologist. He has hormones that need to be administered, and he has physical differences that you can't see in pictures. I'm not comfortable telling you what they are, but hopefully one of the meds will help make it "normal". Sometimes C and I get overwhelmed with it all. There is so much to keep track of and so much to worry about.
And it's such a rare condition, I feel somewhat alone in this. It's just me and C. I've been searching online for anyone who talks about hypopituitary issues, but so far nothing. It seems the focus of my blog has shifted. This morning I caught Skyler looking at Sophie's picture, I told him about his sister.. But it seems I haven't been discussing miscarriage/pregnancy loss much anymore. Now that I have Skyler here, it's all about him, and his medical/hormone dependancy. I understand people not following this blog anymore. Of course you are more than welcome to follow along and watch Skyler grow. If anyone knows of any parents with special needs children or hypopituitary issues, please point them in my direction or send me to them.
8 comments:
In all honesty, I cannot imagine how difficult it must be for you and C. I totally understand what you are saying about still be grateful for having a relatively healthy baby and that there are people who have children that have far worse conditions; however, this is what you know as a parent. (sorry for the run-on sentence)
For you and C, this is the worst.
As far as your blog, I will read whatever you write. I truly enjoy reading your blog. I come here because I care!
And as a bonus, I am enjoying watching Skyler continue to grow into a handsome little baby boy!
I give you credit for not being afraid to say that it's hard. This is definitely a tough audience to have if you want to complain about how having a baby is hard, but the truth is, IT'S HARD. It's not fair that after what you went through to have him, Skyler isn't 100% normal and like all the other kids. It's going to tough for you and C for a long time. You're doing it, though. You have to give yourselves a pat on the back and remind yourselves (a lot) that you're doing a good job. If you believe in fate, then maybe you can believe that you and C were "chosen" for Sklyer because you would be able to care for him in a way that another set of parents wouldn't. Keep pluggin'. You're doing a great job.
(((hugs)))
It seems like once again we are in a similar boat.
I could have written this post. I thank God every day that Lily is here. I'm eternally grateful that her issues aren't extreme (and I feel bad complaining because Skyler has more issues than she), but it's so hard. People don't understand. They say that we should be happy because she's here and that we shouldn't worry that all kids are different. But I do. And I worry to the point of making myself sick and loosing sleep at night.
You are so right. It's overwhelming and it's tiring and other people just don't get it. Lily has the Nystagmus as well. I'll be interested to hear what your opthamologist has to say about it. We considered taking her to a neurologist, and we may still since she has these other problems, but it's just to much to think about and yet it's all that I think about.
I feed guilty for writing about it in my blog. I feel like people just want one baby and here I am complaining. But you know...we've been through HELL! The worst thing that happened to us was loosing the boys, but you know...the NICU was just as hard. Except in the NICU not only was I emotionall drained, I was physically and utterly exhausted. Since we got out, and I'm sure its the same with you, we go to a doctors appointment every week it seems. Its just...a lot.
I find myself obsessively planning things like her first birthday because then I can focus on the happy worries instead of the ones that make we want to crawl into bed and hide.
(((hugs))) You are not alone. You have me (even if I don't comment as often as I would like!)
My sister (trilcat.blogspot.com) recently gave birth to a healthy baby with a rare condition in his eye - PHPV. He's already been through one surgery and they're currently deciding whether to do another. And just that, without dealing with any other medical issues is so incredibly draining for them... What you're going through is incredibly hard. And tiring.
I guess, at some point, this will just be a part of your 'normal' - and then it will be a little easier. (I'm talking with the experience of something I can't write about either.)
I really, really hope you can find someone with a child with similar issues and challenges. I realize that it's not that easy and that hypopituitary issues are rare. But I know that sometimes it seems that the only people who can truly understand a difficult situation are ones who have lived through something similar.
Thinking of you...
I'm not at all sure if this is the same/similar to Skyler's diagnosis, but I found this site dealing with hypopituitarism and panhypopituitarism. (sorry if this isn't helpful or you've already seen this site)
It says: if you need help, or want to speak to a parent of a child with Panhypopituitarism in childhood contact us at (708) 383-0808 or email us: ContactUs@magicfoundation.org
No one expects you to say this is easy. Of course it is difficult, and you have every right to say that. I don't interpret that as you being ungrateful or not loving your boy. The blog is a good place to let out these frustrations!
I can't even imagine how hard it is for you and C. I know you're grateful for Skyler and wouldn't trade him for the world, but that doesn't mean it's easy and we don't expect you to pretend it is. (((hugs)))
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