I was sent an email yesterday asking why I don’t post as many updates as I used to in the past. On the surface, the reason is because there isn’t that much going on anymore in terms of doctors appointments, testing, etc. We know what we are dealing with now, and we just have to deal with it.
But the more I thought about it, the more it is because posting has become a real emotional issue for me lately. I feel I have to be very careful what I say now as to not to offend anyone inadvertently (which I have for whatever reason I still don’t understand). I have to be careful what I post research wise because much of it is not public.
I’m just tired of having to watch what I say.
But it is also because I’ve just been sad lately as to Hannah’s developmental delays. Her learning new skills has slowed down quite a bit over the past few months. It is just the little things like how we still have to hold her bottle to feed her 90% of the time because she can’t hold her bottle (whether it is because of the muscle weakness or her motor planning dysfunction is unclear), how she still doesn’t crawl or move more than a few feet, or the total lack of verbal communication outside of a few “Ga”s. We have already started to lose some things we have learned such as banging two items together.
I long so much for interaction with her. What I would give for her to understand when I ask her a question as simple as “do you want your ball,” “come here,” or “want some cheerios?” Outside of those very few commands which I can count on two hands and have fingers left over, there is no interactive communication.
You have no idea how difficult it is until you are living it.
I’m just so thankful that she does smile and get excited when I am around. At least I have that. She recognizes me, and she shows me love with her cuddles, caresses, and hugs. I treasure this.
But I’m tired of talking about it because I wish I had more positive things to share. It is easier just not to say anything at all than keep talking about how difficult this has become. My entire life centers around Hannah and her care. I just wish I could take away her disease and just let her be a normal child.
I know how hard it is when your child can not communicate with you. Aidan is almost 2 and we have never heard a word from him. It is really hard when you have friends that have children the same age and see all the things they are doing. We just have to remember to take the little victories that we have with our children. It is OK to have these days were you wish you could just take everything away and when you don’t want to post anything because you just feel like there is nothing positive to say. Hang in there Carrie. Also, you should never feel that you need to censor yourself on YOUR blog. This is your blog and you should feel free to post anything that you want. This is for you to just get your feelings out there. If you hurt someone’s feelings so what. Tell them to not read YOUR BLOG. One last thing, you have a lot of people that are here for you and care about you.
I agree with Stacey, you should not worry about offending someone. People are not required to read your blog. They should understand that it is your journey, not theirs and you should feel free to post whatever you need to. I wish I had more to offer in the way of advice, but for now, sending you a big virtual hug.
**HUG**
While I agree with Michele and Stacey in theory, I can’t in practice. You know I am queen of censoring, myself! There is a reason for that. We’re protecting others as much as ourselves. I wish there were a way around this. If you figure it out, let me know!
And, as far as your posting frequency goes, don’t worry about it. The posts will come again. 🙂 Sometimes the emotional energy that goes into generating a post is needed for other things. And, I can imagine you’re needing every spare drop of energy you can get, given how long you’ve been running on empty!
Here’s another hug for good measure! 😉
.-= Cristina´s last blog ..Two Year Check-up =-.
I wish that others would grow up & learn to deal with life without getting offended by everything. You know you can always try to look for one bright spot for a week to tell everyone about. Then save your real everyday feelings for those of us who love you & don’t judge.
hello; thank you for your honesty. I have a sister who had some pretty severe medical problems related to drug use, which- as anyone who’s dealt with that knows- is a drama roller coaster. I wanted to tell you that I know how you feel, about being consumed by an illness, even when it is isn’t your own. a family member’s illness will wrap you up from head to toe. sometimes talking (or blogging) about it helps, but after a while, sharing thoughts feels like you are wrapping yourself up tighter. do whatever feels best, and take care of yourself.
Good luck,
c
Dearest Carrie,
It has been 19 years as of Saturday without hearing “Mom” from Jessica. When Sara Hickman offered to write a song for P2P, she asked us for some quotes or one-line descriptions about our hopes and dreams for our children. I could only give her one: “I only hear you call me Mommy in my dreams” Jessica makes her happy sounds and I swear there is one just for me, so I have found my way to contentment over the years with her non-verbalness. I see her communication in her eyes, her leg kicks, her smiles. You are still so early on in your journey with Hannah. Giving yourself permission to not share, not post, hope or not hope–this is what you do as Caring for yourself. We pour so much of ourselves into our children with special needs. People who love you will understand! And based on all the supportive and loving comments–you are one loved woman! So ditto from me!!
You are NOT alone! I understand what you are going thru. My 8yo son is developmentally delayed (plus many other neuro/behaviorioral issues)and has uncontrolled Epilepsy due to unknown reasons. He contantly is going thru cycles of learning and some regressing. Ds is behind his peers in many ways and I mourned when his younger brother (by 3yrs) started to surpass him in some areas. You are actually fortunate you have a diagnosis for LM Hannah, because you can research on the internet and there is always hope!
I agree with everyone else that you should not have to censor yourself on the internet. If you offend someone, it doesn’t matter at all. This should be a place to vent openly and post the good and the bad. If others don’t like it, then they can stop reading this one.
I hope you know that whether you post updates or not, you, Hannah and your family are in my prayers and positive thoughts.
My God those people who are OFFENDED with your blog should “GET A LIFE” or stop reading it!! They have a CHOICE, so they need to get over it!! Screw them is what I say (and I hope they are reading this)!!Makes me soooo mad!!!
Dont ever let anyone stand in the way of what you wanna do and if writing updates helps you then you keep doing it!If it helps you to VENT then keep doing it, hell with those who dont like it!!!
Reading what you said about Hannahs smiles and how she gets excited when you are around just WARMS my heart! Its her way of saying “Mommy I love all you do for me even tho I cant say it out loud !” and the cuddles, the hugs and caresses are her way of communicating with you. Soak that up, enjoy every moment of it, your baby loves you more than you can ever imagine. And Carrie I love you more than you can ever imagine for the AMAZING PERSON that you are! so dont you STOP writing and keep us informed of Hannahs progress! Hugs and kisses!!!!
I guess I have missed a few things because I am really surprised that someone would be offended by something you’ve said. This is your world that you’ve invited us into and I don’t think it’s our business to ask why you haven’t posted or whatever. I am amazed at your strength and can only imagine the pain in “writing” it down all the time. I’m sure sometimes it can be therapeutic and other times it can feel a lot differently.
As always, do what you think is right for you and yours. Have a great weekend.
.-= Petula´s last blog ..Kmart Bluelight Specials, Dec. 12-13 =-.
I would like to just say “ditto” to most of the above. It is YOUR blog and YOUR space to write whatever you need to or want to share. No one can really know what you are going through, though some may have similar situations.
Do whatever helps you – if typing a thousand miles an hour – whatever you are thinking helps you – then girl just do it and don’t worry about “offending” anyone. My goodness I can’t even imagine the nerve of someone saying they were offended by something you wrote.
Do what ya gotta do to take care of you…as my mom says 🙂
Hi Carrie:
I know how difficult it is to have to watch what you say — I am sick of it too! There is information that I know that could be helpful but there are so many different agendas at work that I feel stifled. And if I offend someone on the research or NIH side, I might not get the help (and information) I need.
I know how difficult it is to not see your kids reach their milestones. But know that you’re not alone and we are all fighting very similar battles, even if our diseases are different the end results for parents like us are similar.
That’s why we must continue to band together to make our voices heard.
Hang in there!
Chris
Oh Carrie – I wish I had some words of wisdom or a magic wand that could make everything all better for you, Hannah and your whole family. I will keep praying for Hannah…((((hugs)))
.-= Rachelle´s last blog ..Heaven’s Very Special Child… =-.