Sunday, April 26, 2009

????

I didn't know what to put in the title so I just put ? marks. Well I am sure you already know, but we did come home and are very happy to be here! Trinity has had a pretty good week other then she vomited Wednesday night and Thursday morning. She also had diarrhea this week too, but never ran a fever so I wasn't overly concerned. We kinda don't know what to think at this point, did the shunt revision work?... or did it not? Dr. Haines would like to wait about 3 weeks before we proceed with anything else. At that time they will do a shunt series x-ray and an MRI of the head and spine. Then after we do this we will go from there and see if we need to start looking at her upper and lower GI. I also need to make an eye appointment this week to have her eyes checked. I am going to stop right here and just explode for a minute or maybe an hour!!

When your child goes through 8 surgeries, many days in the hospital, many doctor appointments, many needle pokes, physical therapy twice a week, did I say many doctor appointments, can't eat like a child at her age should, has lost weight and can't gain any back, you start to wonder "WHEN" do things start to look UP for Trinity? It is frustrating!!! I don't complain to much on this blog, but I have discovered that this blog is what helps me get through all of this along with the strength and grace of God! So if you don't want to hear me complain then I suggest you don't read my blog.

I remember the day when Aubree was a baby and would get her vaccine shots. I remember thinking how horrible it was and how I couldn't wait for the day that she didn't have to have those horrible things done every couple months. Now I have a 14 month old, STRONG child that has been poked more then I can count, along with all the other things I listed above. As we left the hospital this week one of the nurses made a comment "hopefully this is your last visit here Trinity" and my reply was "we hope that everytime, but unfortunately we end up here again and again". Trinity cries at the sight of her doctors, it is almost like she knows what is to come and that absolutely breaks my heart. Now I have to have her eyes checked and for most people that seems like a minor task, but to me it seems HUGE. Everytime I take Trinity to get checked by doctors I always walk out with bad news. My daughter will possibly not walk and if she does it will be a long time before she gets the strength to. So for me by taking her to the eye doctor I have a fear that we will add one more disability to the list and she will need glasses to help her see better. "I DON'T WANT TO HEAR THAT!!" But I know I have to take her because the Neurosurgeon says so and her PT says that she needs to be seen also.

Please don't feel sorry for me, but for Trinity. I don't want pity I just want prayer! I am angry, frustrated, and MAD! Why my beautiful daughter? I will tell you what I don't want to hear right now, "Because God has a GREAT plan for her". Why does Trinity have to be used to benefit other people? Put your child in Trinity's shoes for just a minute. Think of all the wonderful things your kids have experienced and got to do. Now imagine how their life would be if your child was Trinity. It sucks and it is hard! I always tell myself that there is someone that has it worse then us, but I still find myself frustrated because I am still living this everyday. Don't get me wrong, I LOVE and TRUST God and his plan for Trinity, but sometimes I just get to a BREAKING point and want to scream! Maybe I should get a punching bag?!?!

Okay enough with this post I am done complaining and whining.

Aubree is finally back home and we are so happy to be together again!! We need to detox her of all the sugar she ate at both grandparent's! Have a great week and I will try to update you all more as we have some appointments this week.

8 comments:

Liz and Will Timmerman said...

Hi Miranda,

I cannot imagine all that you have gone through in Trinity's 14 months. It just isn't fair, and it really isn't even a question of someone having it worse off. The fact is, Trinity has been through so much, and as her mother, you have also felt every poke, prod and pain right along side her. It is more than most people could endure. I appreciate your honesty and openess in your blog, and wish that I could do a better job of that myself. When people ask how you are doing, it is easier to say 'good' than what the truth is sometimes. It takes bravery to tell it like it really is. I know you read MckMama's blog, and the post she had a couple of days ago about our life on this earth being temporary hit close to home for me. It makes the pain seem more doable somehow. We are at different places in our life, but I still feel a connection to you that I don't think will every go away. Neither of our paths are easy, and I would say neither of them should any parent have to go through. Please know that we think about your entire family often, and pray for you every day. I wish I could express better in words what is on my heart, but I hope that you get the gist of it. :0) There is one little girl on this earth that our son Luke has a very special connection with, and he is Trinity's angel in heaven, watching over her always.
All our love,
The Timmermans

Elsa & Pablo (+ mama) said...

I know. I SO know. And every day I wish I didn't.

Our ride with our daughter Elsa has been a million times easier than yours, but sb brings us exactly the same thoughts. The same fears. The same frustrations.

I can't think much further than until tomorrow. If I do, the anxiety hits me like a truck. I try to stay in the moment. Look at her, see her so wonderful and hang on on our daily routines that are going so fine. I am happy with her and her company makes me forget the sb. Completely.

I have heard also sooooo many times that all this has a meaning. I have also heard sooooo many times that Elsa had sb because she has such amazing and strong parents. When I am alone and crying in the shower it doesn't feel like that.

It is difficult to accept, understand why our beautiful children have to through something like this. I bet we will never know. I count on my faith, our love, our family to carry us through everything that is ahead of us. And yes, I try to remember every day to say "thank you", because everything could be so much worse.

This is a never ending roller coaster ride. But so is life, isn't it?

Lots of prayers, supportive thoughts and strength from Finland.

The Romero-family, Elsa (9m), Anna and Ignacio

CureSMA4Stella said...

Miranda,
Thanks for your honesty . . . I wish I could hug you right now because you know I understand what you mean . . . it stinks to know that you will be riding a rollercoaster for a long time and I find myself praying for more good days to outweigh the bad ones. If you ever want to chat, you know I'm a phonecall away and I'm supposed to have nurses to help with Stella MTW so feel free to call me!!! I know I can't make it better but I do understand and love you for being honest and pouring out your heart so everyone knows how to pray for you. We will get through, girl, we will! Our girls will get through too because yes, God holds them in the palm of His hand and knows everything about them before they were even born. While it's difficult to find meaning, they are His children and we merely do the best we can to care for them. When I feel REALLY down about circumstances, I remember what a nurse said to me at Mayo at Stella's diagnosis, "If you ever question WHY, remember that you would not want her in the hands of someone who would not treat her right." It makes me feel better to think that God chose me to be the mother to a little girl who most likely will not live a long life . . . because He apparently thought we could do it, Miranda. :) He holds us as tight as He holds our little girls. I love you!
Sending you big hugs,
Sarah :)
www.caringbridge.org/visit/stellaturnbullturnbull

Anonymous said...

I don't know how you feel, but I do know that you are absolutely amazing. PERIOD. I do realize that Trinity has been through soooo much, and you as well... but I just always picture Trinity giggling with me that day at the poker run benefit, and all the times I've held her and she looks into my eyes when I talk to her and just smiles... she just melts my heart. I don't have a lot to say... other than I love you guys to pieces. XOXOXO
-Danni

Paula said...
This comment has been removed by the author.
Stefanie said...

Sorry things are rough right now. Hope you are able to get time to decompress every now and then. Glad that you can use this blog to freely express your very normal feelings.

Hope things start looking up soon. We'll keep praying for all of you!

Love,
The Van Wyks

Anonymous said...

I love you very much and it hurts my heart so bad to not only see Trinity suffer through so much but to see you hurting. I dont know what to say...I cant imagine it.
Your strength continues to amaze me.
Love ya,
Shelly

Anonymous said...

Thank you for the honesty you showed in this post. I can't imagine how you feel, but I hope and pray that God's peace will surround you, and that you know just how many people are lifting you all up in prayer every single day. His love for you is unfathomable!

STILL praying....
Danielle
Danielle