Dear Emmersyn,
The past 10 months since your diagnosis have been a whirlwind. We have so much to be thankful for, and those things are what get me through each day. But there are so many things to worry about. I lie awake night after night worrying. I try not to worry. I try to be thankful for all we have and not focus on the 'what ifs'. But it is hard not to. Your pain is complex and confusing. I wish it would just go away. In 2 weeks, you will be having another MRI to help us decide what path to take with your tumor. I am not sure what I am hoping for to honest. I do not want to put you through surgery, but I cannot take seeing you in so much pain. If tumor resection will provide you some relief, than we will take the short term pain of surgery in order to provide you long term relief. There are so many risks with surgery, bleeding, anesthesia, nerve damage, chronic pain, functional loss, the tumor growing back. Is it worth it? I cannot take sitting here and watching this tumor grow bigger and bigger; watching your pain escalate and your abilities decline. Am I being selfish in wanting the tumor gone? So many emotions to work through in just a few weeks. Hoping the MRI and meeting with Neuro-oncology will help us make the right decision for you. I hate the thought of putting you through surgery, but I cannot sit back and watch you fade. And we are finally getting an MRI of your brain, which gives me almost as much anxiety as discussing your tumor. What if we find a brain tumor? There I go with the 'what ifs' again. One day at a time is all we can do. I once read this quote "don't worry about tomorrows problems until tomorrow. You do not have tomorrows strength yet. You simply have enough for today". Praying that God will guide the doctors, and help us to make the best decision for you. We love you, and no matter the outcome, we are tough enough to find a way. Taking it one day at a time, and today was a beautiful day!
Love you always
Mommy
Sunday, October 26, 2014
Friday, October 24, 2014
The Beginning
Dear Emmersyn,
I told myself I would start from the beginning. Back to the discussions between your father and I as we tried to decide if we wanted to add to our family. Back to the many happy, naive, and oblivious moments when your brothers were little.
We married young. We had your brothers young. We worried about feeding them a balanced diet, and putting them to bed at a proper time. We stressed about vaccination schedules, teething, sniffles, and tummy bugs. As they grew, we worried about choosing the right schools, making the right friends, and keeping them active. We ultimately decided to expand our family. It was not an easy decision. We wanted a little girl, but we already had two amazing healthy boys, and it seemed like we were tempting fate to try again. Your brothers were 8 and 6 when we welcomed you enthusiastically into our family. As some would say, we rolled the dice to get a girl and won.
My pregnancy was textbook. You entered this world at 5:27pm on May 16th 2012 which also happened to be you due date. You were a beautiful healthy 8lb 4.5oz baby girl. You were happy from the beginning. A great sleeper, a great eater, and a great pooper. Lets face it, that's about all newborns do for awhile. As you grew, we noticed you were hitting some of your milestones later than your brothers did, but still within expected time frames. You smiled, rolled over, sat alone, crawled. We spent your first birthday at the baseball fields watching your brothers play.
Shortly after your 1st birthday, we noticed a small lump on your spine. In hindsight, I had noticed this since you were only a few weeks old, but I never thought it was abnormal. You started developing darker pigmented spots, and small lumps under you skin. You underwent an ultrasound, an MRI, and surgery to determine the cause of the lump. On January 13th 2014, you were officially diagnosed with Neurofibromatosis type I. Neurofibromatosis type I is a genetic disorder that causes tumors to grow along nerves. Our worries quickly changed. We were thrown into the world of MRIs, multiple specialists, physical therapy, and uncertain futures. We researched alternative medicines, anti-inflammatory diets, and anything else we could think of to help ensure your health and ease our minds. This journey has been difficult thus far, and this past 10 months have been more stressful than anything I have every endured.
You have changed our lives in many ways. You have shown us true strength and resilience. You have taught us what is really important. We used to stress over work, but now we are happy to be able to work and provide for our family. We used to worry about sniffles and tummy bugs, but now we are thankful for stable MRIs and pain free days. We used to worry about the future, and now we are able to find the beauty and peace in the moment. We love you and every imperfection you have or may develop. Our family was never complete without you. You have taught us how to slow down and enjoy each other's presence. You are truly a gift from God, for which I thank him every day. I have started this blog to help me stay focused in times of doubt, worry, and stress. Ultimately, its about you and your journey with NF.
Love You Always
Mommy
I told myself I would start from the beginning. Back to the discussions between your father and I as we tried to decide if we wanted to add to our family. Back to the many happy, naive, and oblivious moments when your brothers were little.
We married young. We had your brothers young. We worried about feeding them a balanced diet, and putting them to bed at a proper time. We stressed about vaccination schedules, teething, sniffles, and tummy bugs. As they grew, we worried about choosing the right schools, making the right friends, and keeping them active. We ultimately decided to expand our family. It was not an easy decision. We wanted a little girl, but we already had two amazing healthy boys, and it seemed like we were tempting fate to try again. Your brothers were 8 and 6 when we welcomed you enthusiastically into our family. As some would say, we rolled the dice to get a girl and won.
My pregnancy was textbook. You entered this world at 5:27pm on May 16th 2012 which also happened to be you due date. You were a beautiful healthy 8lb 4.5oz baby girl. You were happy from the beginning. A great sleeper, a great eater, and a great pooper. Lets face it, that's about all newborns do for awhile. As you grew, we noticed you were hitting some of your milestones later than your brothers did, but still within expected time frames. You smiled, rolled over, sat alone, crawled. We spent your first birthday at the baseball fields watching your brothers play.
Shortly after your 1st birthday, we noticed a small lump on your spine. In hindsight, I had noticed this since you were only a few weeks old, but I never thought it was abnormal. You started developing darker pigmented spots, and small lumps under you skin. You underwent an ultrasound, an MRI, and surgery to determine the cause of the lump. On January 13th 2014, you were officially diagnosed with Neurofibromatosis type I. Neurofibromatosis type I is a genetic disorder that causes tumors to grow along nerves. Our worries quickly changed. We were thrown into the world of MRIs, multiple specialists, physical therapy, and uncertain futures. We researched alternative medicines, anti-inflammatory diets, and anything else we could think of to help ensure your health and ease our minds. This journey has been difficult thus far, and this past 10 months have been more stressful than anything I have every endured.
You have changed our lives in many ways. You have shown us true strength and resilience. You have taught us what is really important. We used to stress over work, but now we are happy to be able to work and provide for our family. We used to worry about sniffles and tummy bugs, but now we are thankful for stable MRIs and pain free days. We used to worry about the future, and now we are able to find the beauty and peace in the moment. We love you and every imperfection you have or may develop. Our family was never complete without you. You have taught us how to slow down and enjoy each other's presence. You are truly a gift from God, for which I thank him every day. I have started this blog to help me stay focused in times of doubt, worry, and stress. Ultimately, its about you and your journey with NF.
Love You Always
Mommy
Subscribe to:
Posts (Atom)