What an emotional day

[nicksmom]

Hi all
It's been a while since I've posted or updated on Nick but today has just been one of those days where noone else in the world could understand except all of you. Â*I haven't stopped crying since 9:30 this morning and I'm not sure why, well I know why but I can't shake it. Â*Sat., June 19th will be the 1 yr. anniv. of Nick's decannulation Â*Sun., June 20th will be the one yr. anniv. of the day we brought our son home with no surgeries in site. Â*It has been an emotional year with a lot of ups and downs. Â*We are planning a small family BBQ for Father's Day and I was going to get Nick a cake. Â*Now I'm scared to celebrate for fear of it not over or celebrating when we don't know what is in the future.

Nicholas will be 2 yrs. old in August, he is not walking yet, doesn't talk "correctly" yet (talks all day to himself and says many words we understand), not growing and still isn't eating (g-tube). Â*We have seen so many doctors I can't stand it. Â*All of them with different views/oppinions. Â*Some are ok with his status due to his past issues (9 surgeries, trach, 93 days in the hospital,etc) and others are starting to get more concerned. Â*His PT came by the house yest. and dropped Â*off a walker (medical kind) and asked us to start getting him use to it because we were going to need to order one. Â*That started the emotions.

Today we went for a spinal MRI and BEAR hearing test (docs notice somethings they didn't like) Â*They had to sedate Nick and I was sure everything was going to be OK. Â*After the MRI they brought Nick out........he was on a bed with O2, CPAP, Pulse Ox and suction machine. Â*I FREAKED OUT!!! Â*All of these things that I swore I'd never have to see next to my child again were all on his bed. Â*Nick was gagging and having a reaction to the secretions so they were being "safe" Â*the docs got all worried and over reacted (in my book) so of course I over reacted and haven't stopped crying since. That was EXACTLY how he looked the night before they trached on Sept. 4, 2002. Â*I can't get the thougth out of my head and I can't stop being scared to death.

I just got the phone call that Nick is losing his hearing and they want us back to do the test again and see what our options are for the future. Â*The results of the MRI won't be in until tomorrow but they mentioned the word Spinal Bifida. Â*I am so freaked out and an emotional basket case. Â*I am sure whatever the future holds he will deal with it and he will always be the happiest boy around, but I can't stop feeling sorry for him and I can't stop crying because today I am scared again and I HATE THIS FEELING!!!

Sorry so long, but as always...........thanks for listening.
Carrie

[Ann]

Carrie - what a day of emotions for sure! Â*You have every reason to have a good cry. Â*I'm not sure I have any words of wisdom, but to say, I think it's important to celebrate the GOOD things that have taken place in Nick's life ~ it's important for Nick and for you. Â*I know you would never intend this, but you don't want Nick to think that you can't celebrate what he DOES accomplish because you are worried about what he may not. Â*Take the advice I received on my earlier post and put today and the possibilities of Nick's future aside for this weekend and have a grand celebration. Â*You DO have so much to celebrate. Â*

Once you get more information on Nick's hearing, I can answer questions about hearing loss, as can Ariel's mom, as can Christy, and I'm sure others. There are many of us who have children with hearing issues. As far as Spina Bifida ~ I can't imagine this is something that would not have been discovered at birth, but, I may be wrong on that. Â*I know it's hard to never really be done with all the special needs issues our children bring to the table. Â*

Anyway, I've rambled on long enough, but remember, like you told me about Jack (and you were right), Nicholas will be OKAY and the most important thing is that he knows he is loved. Â*Have a wonderful, happy celebration on Sunday and know that Jack and I are there with you in spirit and we are so proud of Nick. Â*He has overcome so much, he is so beautiful (okay, handsome) and he has the BEST mommy in the world.

[cariaad]

Carrie, I wish there was an easy answer for you. I know how you are feeling, even tho we are still trached, I sometimes feel afraid to celebrate milestones when we finally reach them. I just try to remember that no matter what, we love Alli, she is happy and relatively healthy. Over the past year we have had numerous dr changes and now are finally dealing with some who are "on the same page" as we are...it has made an imense (sp) difference for our emotional well-being. I sometimes wonder if the "issues" will ever all be resolved~ as one resolves we get hit with another and it seems unending. But it's ok to have a day of tears once in a while. Just try to keep an even keel if you can. Deb

[Melisande]

Our hearts, thoughts and prayers are with you, your boy and family. Â*We just got back from our first annual retesting stay at the hospital with Donovan. Â*We hadn't been back for an admission since we went home for the first time, not even a full year ago. Â*I didn't really realize how traumatic that was going to be for me personally. Â*It was his first birthday, then a trip to the hospital. Â*All those emotions seem to flood back, like PTSD. Â*It really is. Â*I have been real emotional ever since and really wiped out. Â*I guess I'm saying that I can feel the emotional wave we all ride when our children are sick and we don't have all the answers. Â*I'll pray for the best for you all.

[cbissell]

While Aaron is featured on this page, it is his twin brother Eric who was/is my biggest worry. I think the hardest part for me early on (where you are now) was the unknown. Once Eric had a definite diagnosed, then at least I could begin to cope.

Then there are times when we all simple don't cope well. You never know what will trigger negative emotions such as helplessness, sadness, anger, frustration, jealousy, depression....etc. However, I can say that the negative emotions tend to get less intense over time and that managing those emotions will get easier.

My twins will be 11 years old next month and we still do not know what the future holds for them. In fact, none of us knows what tomorrow will bring, which is why it is so important to celebrate today. Have a nice time tomorrow and celebrate the positives.

Happy Father's Day to all the special Dads!

I know the fear you are explaining. The dreaded unknown. Jacob in the beginning wasn't expected to be able to much with his hands, not sure if mentally he would be okay, or that he would be able to walk. Eventhough, the neurologist said he looked fine, the NICU doctors said they just didn't know what his mental capabilities would be.

Today, Jacob has been walking for 5 months (started at just ten months or age), He is signing to me, and plays with his toys with no problems. And even though he is doing so well, I still have that fear of the unknown. Jacob does not have a diagnosis, he doesn't seem to fit into any syndrome. I still have bad days where I just can't seem to keep the tears from falling. I am afraid for him, worried for him, but I refuse to let my fear hold him back.

I just wanted to let you know, what you are feeling is something that many of us feel from day to day. You are in my thoughts and prayers. I hope that knowing you are not alone in your thoughts helps make your day just a little easier to deal with.

Amy

[hcs_mom]

The emotions of this journey are so overwhelming sometimes. And then with the added issues of different docs telling you different things...ugh.

It's so hard to focus on the positive things going on when the docs want to talk about the negative and what "might" be happening. It's especially tough when then hit you with something unexpected. Unfortunately, I think docs lose sight of how tough this is on parents and just matter-of-factly throw something out. Then they walk away like it's no big deal.

Try to focus on the positive things about Nick. Worrying about the unknown is sooooo stressful.

I hope you are feeling better today. I know when anything like this happens it takes me several days to shake it. Even now, certain issues are still in the back of my mind.

Take care.

Jennie

[arielsmom]

Carrie, I've tried to respond to your post a couple of times already but am at a bit of a loss for something super inspiring to say. It sounds like you have hit a bit of an emotional wall, which is sooooo normal! You have been through so much already (lots of really wonderful stuff) to be getting new and scary information is so hard. For those of us whose kids don't have a diagnosis there is that fear of the unknown and "what else is there to come?" I have tried sooo hard with Ariel to expect nothing and feel blessed for ANYTHING she gives me. It still just about kills me when things I've made a certain amount of peace with get taken down a notch to some new low. I totally agree with what Jennie said about the doc's delivery of the bad news, sometimes its' like they are completely removed from the fact that this is your CHILD that they are projecting about! I've been really spacing out my Dr. appointments to protect myself a bit.
Try and hold on to the blessings and think about what a little toughie your son is to have come so far! I'll try and do the same!!
Karen

[nicksmom]

You are all so wonderful! Thank you for your support. We had a wonderful weekend and forgot about everything. I still have not called the doc's for Nick's test results.

Sat., my brother came in from D.C. and brought Nick so many gifts. We went to the beach for breakfast and into New York for the evening. We went to dinner at a great place next to the WTC and met up with some friends I use to work with at the WTC, they made me remember how lucky I am, and Sunday was a wonderful BBQ full of love and laughter.

I know that the future is not predictable for any of us and I know that we all face difficulties. I'm just thankful that I have all of you to lean on. I have realized that our children recuperate from doctors appt. much quicker than we do. I have realize that no matter how sad I get my son is always happy and I have realized that good friends (even if you don't know them) are the best medicine.

Thanks
Carrie