Not an option, of course, with two small boys and a rambunctious dog, and I am grateful that life surges on and forces me to keep moving. That feeling of extreme exhaustion was replaced by obsessive googling (my go-to coping mechanism, and yes, I'm aware that it isn't exactly healthy). Now I'm just a little stressed, a little sad, and able to keep things in (better) perspective.
In general, I don't write about my feelings or the profound sadness and stress (and anxiety/worry/panic) that accompany any new diagnosis or revival of an old one. It's too personal, and I honestly cannot stand the platitudes that people (who do not have sick kids) throw around in these situations.
God doesn't give you more than you can handle.
He doesn't look that sick.
I couldn't do what you do.
It could be worse.
These things add stress to an already stressful situation. The "it could be worse" statement is probably the cruelest thing anyone can say to a parent struggling with a sick child. It makes light of the current situation - a situation that is difficult, painful, and stressful. Of course it could be worse. It could always be worse. But that doesn't make the situation we're going through now easy. That statement makes the claim that what my child is going through is nothing. Not a Big Deal. And I hate it.
These statements implicate that you must accept every situation with, "WOW, what a great day! Everything is beautiful and it is such a wonderful thing that my child has XYZ! What a blessing!" Trust me, not everything is a beautiful, sunshiny gift - some things are tough as nails. We're getting through it, but we're terrified, stressed, and uneasy about the decisions and surgeries that are ahead of us.
The g-tube is the most stressful thing, I think, because it is a visible reminder that something is Not Right. Everything else is pretty much invisible (well, when he's not wearing his hearing aids or covered in a C-Pap mask), but the "button" on his tummy really bothers me for some reason. At first it was going to stay in for a period of three months, but after talking to the GI team, it will likely stay in for as long as Nolan needs help breathing at night. His stridor is still quite loud, so I doubt that the C-Pap is going anywhere soon. Which means the "button" will be sticking around for a while, too. And that makes me sad.
I am SO grateful for other parents who have "been there, done that" and assure me that the button is a Big Scary Thing when you first make the decision, but that it ends up being no big deal. The kids can swim with it, play with it, and no one even knows it is there. One group of parents is particularly amazing and has helped us immensely, but I'm saving that for another post. Tough times create beautiful people, and there are some really outstanding people out in the world.
A gift from some wonderful people -
helping moms and kids to cope with tubes, one friend at a time.
helping moms and kids to cope with tubes, one friend at a time.
10 comments:
People just don't know what to say. We used to get that a lot with my nephew. It isn't a blessing for him to have this or for you to go through this. There is hope though. The Gtube is something you get used to. My nephew had it, for other reasons. I am saying a prayer for you and your son. You will get through this. Just breathe a little. Surgeries are terrible when it includes a little one. But I will be praying for you and I am sure many others will be doing the same! Sending hugs!
scared, worried, pissed off. All very valid. So is grieving - for the life you dreamed of for your son before he was born vs the life he has been given. And the same for yourself. We all have a vision when we're pregnant of what life will be like for and with our child. When life turns out different - harder and more painful with more difficult decisions - it's okay, and necessary to grieve for the loss of that vision.
It's okay to rail at God too. It doesn't make you a bad person. It makes you human.
Oh Leah, am in tears reading this ! You are such a brave mum and I have never ever seen this side of you ! I can just feel your pain and the anxiety for Nolan and his surgery. Sending you best of wishes, hugs and positive vibes your way. Hang in there girl many prayers for you and Nolan. You are that pillar of strength , remember that !Love,hugs and prayers your way !!
Thanks, guys. I'm doing better this week, but last week I was really...depressed, I suppose. I'm trying to focus on the long run, but my gut is telling me that this is going to be really, really tough for a while. One thing at a time, I suppose. It doesn't help that Nolan is not able to do things that he USED to be able to do (like hop on one leg, for instance). Stupid little things, but kids aren't supposed to go backwards in development, and it stresses me out.
Sending you hugs, and feeling really sad with you. I'm glad that they're finding solutions for his needs, because I know the journey's been long. I hope the gtube is as "pleasant" as those families describe it to be. Hang in there! Hug that boy for me!
Oh Leah, my heart hurts with you. And if I've been guilty-as-charged, I'm so, so sorry!
I don't hold with the "God never gives us more than we can handle", but I do know He'll be with you faithfully, through it all.
And hurray for friends in-person and online, who have been down similar paths and can comfort and encourage.
Prayers from the opposite coast,
Julie
Oh, Julie, you've never been an offender - there are a lot of people (work colleagues, etc) that give that sort of vibe - questioning the need for the surgery, saying it can't really be all that bad, etc. And really, I know that there are many worse situations out there - but this is tough for us. We're dealing, but it's a surgery that we have tried to avoid for over a year, and the worries over what the global issues could be and the cause of it all... I think things will get easier once we are through with the surgery and can get on with life.
Oy. I hate those platitudes too. Everyone has their own story. One person's isn't easier/better than another's. At the end of the day, we all have to cope with what we have.
That said, I do know that you are STRONG and SMART and FEISTY. You will get through this. It may not be easy or pretty, but you will pull through it. You have every right to have a pity party complete with wine, chocolate and a pedicure if that is what you need. :) Thinking of you and Nolan.
One of the biggest lessons I have learned from having KayTar is that there IS NO comparison scale for what qualifies as BIG or SCARY or STRESSFUL. If you are going through it and it is big and scary and stressful, then that is EXACTLY how it is. It doesn't invalidate the weight of your situation because there are some kids are worse off than yours or some mommies are living without their babies and so forth. Yes, those are unimaginable and terrible and heartbreaking things for sure...BUT their existence doesn't make what you are going through LESSER or magically not a big deal! It is okay to be worried and sad. If I think back, I can still feel that knot in my stomach that developed as soon as we made the decision to move forward with the g-button...and it didn't go away until it was said and done and we saw how the benefits outweighed whatever it was we had worried about on the other side of it. I believe you guys will adjust beautifully to this, but you can't just will yourself into that...it is a process and you just have to let yourself move through it, just like you are doing.
And seriously, if you ever want to talk about it, like over the phone, I'd be happy to give you my number or give you a call. I had some friends who did that for me when we were going through this and it did provide some comfort.
Oh Leah, I'm late to this post. I am so sorry that you've been having a rough time. Platitudes. I'm sure I've heard them all. I stopped telling X's story in real life because I didn't want to hear them anymore, but I'm sure I've been guilty of doling them out in the past. Now I'm trying to balance staying positive with being honest, and people find me shocking, especially since X's issues are also mostly invisible. I depend so much on my online friends now.
Making the decision to go ahead with surgery that you've been doing everything to avoid and that has an unknown outcome? Right there with you. What I struggle with is the age of X. He's no longer a baby with little comprehension or memory, but a bright four year old who is aware of himself and his body, to which we will be authorizing an irreversible, surgical change. And that fact that other people's children have undergone the same procedure doesn't completely eradicate the anxiety and fear, but it is something to hang on to with a tighter grip than Dr. Google (guilty here too).
As always, thinking of you. xxx
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