Lord Above

Third Day "I need a miricle"

 "And in your hour of desperation

Know you're not the only one

Prayin', 'lord above, I need a miracle.'"

Sometimes I want to scream at doctors. Their job is supposed to help people, but maybe, in this day and age where people sue over anything, it makes dotors reluctant to help. I don't know why doctors twist words and basically make things up. Why can't life be simple? Why can't you go into the dr office and they offer possibilities or solutions. I know many people with this illness that basically give up since dr after dr blows them off. 

I started writing this on Monday after our initial consult. We met the doctor, I was optimistic, then we saw his report stating that we were trying to disprove my mom's illness, that she only had possible SMAS, and no apparent distress. I was ready to kick ass, but was unaware that things were going to get worse. We met with the vascular surgeon who proceeded to inform us that there is no obstruction of her duodenum therefore she does not have SMAS anymore. ?????? He also told us that she has wide open veins and arteries so there was nothing he could do. I lost it at that point which was my downhill slide for the day. He never printed off the CT report and I never saw it until after we left the GI's office. The GI repeated what we already knew from the vascular surgeon, but as soon as I read my mom's CT report I was shocked. It clearly stated that her left renal vein is being compressed!!! That is a related symptom to SMAS, nutcracker syndrome,.

So where do we go from here? Where do I go from here? My heart is heavy and tears keep welling up. In desperate need of a miracle. In need of someone, anyone that can help "cure" my mom. My mom is my world and I don't want to lose her.

God's Will

George Clancy "Bad Things Happen To Good People"

"Cause good things happen to bad people
If justice was served
We'd all get what we deserve
But bad things happen
Bad things happen
Bad things happen to good people"

I drive myself crazy trying to figure out "why." I will drive myself mad unless I learn to let it go and just accept that it is God's will. I believe that when I can truly do this 100 percent I will finally feel a little more free. We cannot live in the worries of tomorrow because we will forget to live. Every moment that I have with my mom is treasured and even though we may fight and argue like mothers and daughters do I still love her with all of my heart. 

Over the past few months I've gotten the pleasure of really getting to know another Warrior. She is close to my age and my heart aches for her and her family. Like my mom her SMAS was developed by a traumatic accident and was also unavoidable. She, like me, constantly questions "why" and wonders what her future will be like. I just want to hug her tight and make everything in her world alright. She's gorgeous, funny, and a true friend who deserves everything this world has to offer. 

We all struggle with God's plan and maybe one day we will be privileged enough to realize why things happened the way they did. Until that point I will continue praying for my mom, my friend, and all the other Warriors struggling with this horrible syndrome.

DO YOU MISS YOUR NORMAL LIFE?

I have so much chaos in my life, it's become normal. You become used to it. You have to just relax, calm down, take a deep breath and try to see how you can make things work rather than complain about how they're wrong.

Tom Welling

“Normal is an ideal. But it’s not reality. Reality is brutal, it’s beautiful, it’s every shade between black and white, and it’s magical. Yes, magical. Because every now and then, it turns nothing into something.”
― Tara Kelly, Harmonic Feedback  

 

 I was asked yesterday "do you miss your normal life?" As soon as I read the question tears started flowing. Even at this moment tears are rolling down my face. What is normal? What was normal? Normal has not been in my vocabulary since January 1, 2011. On January 2, 2011 my family was in a car accident that would forever change our lives. My mom unfortunately suffers the most, which I have discussed in the past, but today I want to focus on me. 

 

What was normal? Normal to me and my family was being able to go out and have dinner without servers giving my mom looks when she ordered a small meal. Normal was going to a theme park with my mom and her keeping up with my every step. (I can be a fast walker) Normal was never having thoughts about my mom not being there on my wedding day due to being in the hospital or fears that she may never meet my future children. Normal was being able to go out with friends without worrying about taking my mom to the grocery store. Normal was playing around at Walmart or Target without being on a time restraint. Normal was not having to worry about any "what ifs."

 

What is normal now? My normal now is constantly checking up on my mom. Normal now is giving up weekends with my husband to ensure my mom is taken care of when she is in town. (Plus I miss seeing her) Normal now is squeezing in time for the few friends I have left, but those that stuck around are true friends. I am lucky that they are so loving and understanding. Normal now is looking over my shoulder when out with my mom to make sure she isnt doubled over or clinging to the shopping cart. Normal now is spending 10 minutes in a store rushing around to get what she needs before she becomes too sick. Normal now is spending every spare moment researching Superior Mesenteric Artery Syndrome and figuring out what else we can try to help her get better. New normal is knowing that there is a chance my mom could die from this syndrome, but I will do everything I can to avoid that outcome. New normal is now an appreciation for life, for the love of my mom, gratitude for my husband, his family, and my friends for always being there for me. 

 

My life in some ways would be better if the car accident had never happened, but it also wouldn't have brought me closer to my mom, pushed fake friends away, introduced me to some amazing Warriors and family members of those Warriors. I wish I could take their pain away, my mom's pain away, but this is the hand we have been dealt and I have learned to accept my new normal. 

rough days

“When pain brings you down, don't be silly, don't close your eyes and cry, you just might be in the best position to see the sun shine.”
―Alanis Morissette 

So I am trying to keep my head up, keep smiling, and praying that everything will be okay. Some days are just so much tougher than others. My mom had her surgery and is still in recovery. I unfortunately had to come back home to work leaving her alone. I worry every single day about her being alone since someone else can't manage to go over there. Today her incision opened up with makes me fear an infection. It's so hard not to worry. It's hard to stay strong. I don't know how others can do this day in and day out. I thankfully have an amazing man who is my rock. 

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

This post was originally going to be about my mom's upcoming procedure, but in a heartbeat our SMAS community is feeling heartache. One of our warriors stopped breathing in her sleep last night and the paramedics were called. We are all praying that she can pull through, but at the same time I pray that her pain and suffering ends. Life is short and that's why every moment counts. 

My Wish

"Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence." -John Adams

I've been procrastinating on writing even though some things have been spinning around my head. When trying to decide on a quote tonight I thought about just using "My Wish" lyrics, but they didn't quite fit in and the need for writing tonight actually stemmed from, yes I know, Dancing With The Stars. Corbin dedicated a dance to his sister which is what send my mind in motion. If I could have one wish I'd wish for my mom to be healthy. That's my one wish. I wish to have my healthy mom back and yes, a huge part of that is selfishness speaking. I want back the mom that I could go shopping with, out to eat with, to amusement parks with and not having to plan days around how she's feeling. Please do not get me wrong, it's not about having to help her out, it's about seeing her happy. Wanting my healthy mom back is about seeing her able to eat, walk without pain, and enjoy life. I want her healthy so she doesn't have this pain anymore. I want her healthy so she can enjoy life with my family members. There's also a sense of guilt with moving out in a few weeks. I'm afraid of what might happen without me being around to help her out. I'm afraid she's going to sink into depression. What's worse is my brother and sister in law don't come around much and won't be around much to check on her. 

 

 I'm thankful for my cousin. He and I don't talk very often, but at least he's the closest person to me that knows the fear of losing your mom at a young age. He has at least been there to lend an ear and give me some supportive advice. Love every minute with your loved one. Try not to think about the what ifs. Most importantly, stay positive. I have hope that one day I will have my "healthy mom" back. I have faith that things will work out and be okay and that my mom will not only continue to be a survivor of Superior Mesenteric Artery Syndrome, but she will be a healthy normal survivor. 

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Strength, Love, and Courage

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.-Lao Tzu

Another breakdown/meltdown today. I know I've talked about how alone I feel in this whole process and how my brother and sister in law are no where to be found despite the fact that they are only 30 minutes away. Now, this meltdown was for several reasons. My job is wearing me out I'm technically working 12 days in a row in a very stressful environment. I'm tired of only getting to see my boyfriend one or two days a week. Lastly, my mom has become sicker. She's now weighing less than she's ever weighed before. It's a struggle to try to get her to eat despite the fact that she is starving. All of this has lead to a horrible migraine that I haven't been able to shake. I am so thankful for my amazing boyfriend whose simple question of "what's wrong?" lead to me just breaking down and instead of telling me to get over it he just pulled me in closer, listened, and calmed me down. It's hard feeling helpless. It's hard seeing my mom so upset and I know she's tired of being sick. She put up an older picture of herself from before the accident and the SMAS started and to see how different she looks is unbelievable. I know she's sick of being sick, but I don't know how to help. I don't know how to make her better. You'd think having a nurse in the family would be a little more helpful, but is so distant. How can you be part of someone's family and so uncaring? 

I am so glad I have my boyfriend and close friends around. They are the ones that continue to give me the strength to keep going, to keep looking for answers, to continue being there for my mom. I continue to hope that answers will be found, that my mom will defeat this, and that I will have my healthy mom back again.