View Full Version : First Breakdown
03-10-2010, 10:30 AM
My son was just diagnosed with unicoronal and i feel like my worlds turning upside down, i just dont even know what to do with myself. In the next two weeks we have to go to see a neurosurgeon, craniofacial surgeon, ENT, GI, pulmonologist, speech therapist, MRI, and check in with his pcp every two days. im so scared about my sons future i just cant even sleep. i wish i could just take all this away, he just so little to have to go through this. I feel like im about to have a complete breakdown. HOW DID YOU GET THROUGH THIS??:help, also how do i prepare my 7yr old, hes already hearing bits and pieces of whats going on and it his him really upset. thanks for any advice
03-10-2010, 10:36 AM
Everything you are feeling is very normal and we have all been there too and survived it. You have to! It is ok to admit how you feel and have a good cry though - I did that a lot at first and it does help. You have a lot of appointments and that is emotionally draining. I don't know about the other problems Chase has but the Cranio is very fixable and I know a few children with reflux and that is a manageable condition too. It's a lot harder when you are dealing with it all at the same time! Stay strong and ask for help when you need it! We are all here for you.
03-10-2010, 11:33 AM
To get through this, first stop and breathe. Cranio is a correctable condition, and these kids tend to come through the surgeries with flying colors. I was born with right coronal cranio and did fine growing up. I was valedictorian in high school, graduated summa cum laude with a B.S. in math, and earned an M.S. in math. My son was born with bicoronal cranio and is doing well. These kids are very strong, and yours will amaze you.
There are tons of appointments to go to, but just take it one day at a time. Spend this precious time enjoying your children. Tell the older kiddo that little brother's brain is getting squished but will be fixed soon. Brains bounce back very nicely!
You can get through this, especially with the support of folks on here.
Out of curiosity, what part of Jax are you in? Hubby and I lived on the north side when we first married because he was a math teacher at Ribault Middle. We liked Jax when we were there.
03-10-2010, 11:57 AM
Dont worry momma, it really is ok to "breakdown" as long as your able to pick yourself back up and get back down to business. We are here for you and everything your experiencing has been felt by someone else on here so whenever yo need to vent it out dont worry about how it sounds because there are NO JUDGEMENTS made here! We are here for you, I am here for you!
03-10-2010, 12:19 PM
You're montra should be, "It's FIXABLE!!!!" "It's FIXABLE!!!" "It's FIXABLE!!!"... These are the hard days, harder than any you've had in your life, but you'll get through it, I promise you. You're Super Mommy, with strength you never thought you possessed!!!! It's OK to cry... I did, and lots of it, infront of my kids even. I think that honest emotions that kids are exposed to are far better than bottling it up in side until you explode. My eldest was 8 at the time, middle was 5, and they understood exactly what was going on. Any questions they had, I answered, honestly. They knew that a Dr. in Dallas was going to help Ian and make his forehead all better. They were able to express that they were scared and I expressed that I was too but that I knew that Ian would be just fine and that it would all be over soon. They are SO loving toward their little brother, it makes my heart melt. It's definately brought them closer together.
Come here and vent, it's the safest place to do that as we've all been there, done that... This will be your obsession until well after surgery, as it should be. Some close to you may not understand or be able to relate to your obsession, but we get it here. (((HUGS))) You'll make it to the other side before you know it, I promise!!!! Hang in there and keep us updated on your Dr.'s visits, etc... And ask anything that comes to mind. We're here for you...
03-10-2010, 01:29 PM
:yeahthat Well put Larkin!!!! Well put!
03-10-2010, 01:42 PM
Hang in there! One of he best things you can do is get it out here. It will help you remain stable in your "real life". The times when you are constantly working on your child's health can definitely be overwhelming. It's like life won't let you stop thinking about it for even a moment. As you get more answers about what is going on and what the plan is to fix these problems hopefully things will get easier. We are here for you!
I have a 4 yr old, which is definitely different that a 7 yr old, but we were pretty open about what was going on. We were also honest about what we knew would work out okay and what we didn't know for sure. "She may need eye surgery just don't know yet" etc. I also said a lot "if this was happening to you I would be doing the same thing for you"
03-10-2010, 03:31 PM
No more advice then what's been already said, just wanted you to know we are all listening. Hang in there.
03-10-2010, 05:19 PM
It's a very traumatic surgery when you hear it described. It's impossible to believe it will all be ok, but it will. I remember feeling just how you feel, and I wanted to take Florence and run as fast as I could away from all of it. But I knew we were doing the right thing, so I just stuck with it as best I could. You will too. Hang in there mommy.
03-10-2010, 11:07 PM
Im happy to say that I am feeling much better today, and I took my 7 year old on a long walk so we could talk about this. poor thing overhears so much. he didn't understand that chase would be asleep for the surgery, now that he has some things cleared up he's doing much better. and yes, this has really already become an obsession of mine, being on here means so much to me, and having everyones support is just such a gift. as for all of the appointments and tests, I got myself a big three ring binder and focused the day on organizing everything. thanks again for everything :)
(ps cindy- I live right on the beach in Mayport, my hubbies in the navy here)
03-11-2010, 09:25 AM
I'm so glad you are feeling better today!! This is such a great place to vent and it's so nice to have people that know exactly how you feel!! I've said it time and time again...the support of my family and friends is great. But, they just don't really understand all the emotions. I just wanted to shake them and be like...but you DON'T understand!!! :snapI was a wreck at first, but being on here has helped me so much. I'm surprised I still have a job though...because I'm so obsessed with this right now. Everyone on here is so great...I don't know what I would do without it!! We are all here for you!!
03-12-2010, 01:55 AM
Glad to hear you are feeling better and hopefully more in control of the situation. I love the binder idea and I have used it with all of my kids and their various medical issues, but mostly with Jimmy. Lots of prayers coming your way and Welcome to this site, it's an amazing source of information and support.
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