From The Heart Of A Mother
Things have been happening so fast lately that sitting down to explain it seems impossible. Everyday has not been easy, yet I really put a lot of effort into keeping a positive attitude, but lets face it, with all of this luggage to carry around dark days are going to happen.
I went back to the doctor that was explained in ‘Why I Named It Marry Rich and Have Babies’ located in the top left of the page, and have decided there is another surgery in my future. I never thought I would ever go back there, my pride would not tolerate that, it would have to be something amazing, a miracle of sorts for me to even entertain the idea. Ask and you shall receive. My mother decided to write a letter to the doctor and I decided the best way to explain it is to have you read the letter. It is an exact copy, aside from the doctor’s name, as what my mother had sent.
Before you read this, I would like to speak from the heart for a moment. The life in which my mother describes is that of me on my darkest days, and quite frankly, me without any protective walls guarding my sensitive self. So please be gentle with this information as it is me…. completely exposed and vulnerable.
Dear Dr. K,
I am writing in hopes that you will understand the ramifications of Carly’s last appointment with you, which was approximately four months ago, that has left her feeling as if there is no reason to live, which is why I am writing you. I am at a loss as to what to do to help her and how to give her some hope at this juncture.
This is what we understood prior to our last appointment with you:
Carly was living in NC and was trying to work, but even working part-time was putting her in the emergency room every two weeks for infusion due to low levels of either potassium, dangerously low magnesium or both. When we came to see you approximately in September of 2011, you told us to move Carly back to Ohio so you could help her by doing some tests and see about this option of elongating her intestines. At that meeting in September you told us that you would do some tests to see exactly how much intestines Carly has left now, and that there was a procedure now to lengthen the intestines which could change Carly’s absorption level and allow her to live a more normal life. We have always been told she has about 10 inches left. In fact, we were told by Carly’s GI doctor, whom you hooked her up to see back in 2003-2004. This doctor even told us he did a symposium/lecture on a person surviving with only 10 inches and no transplant or TPN (Total Prenatal Nutrients). I am sorry, but his name escapes me.
As soon as Carly’s lease ran out in NC, we started the process of getting her Medicaid changed to Ohio so we could come see you. After moving back to Ohio, it took three months for the Medicaid to process and change from NC to OH. Carly was doing nothing but waking up, eating, and when feeling good, getting groceries and visiting friends. Obviously, when Carly came to the hospital in December her blood work showed normal levels of potassium, magnesium, etc. due to no exertion or activity for the prior 3 months. But we know from her past that if Carly had been working even 4 hours a day, the blood work would have been as we previously discussed of dangerously low potassium and magnesium which had the ER doctors in NC worried about her heart, therefore the constant need for infusions. If Carly had tried to continue to work, they were even talking about setting up infusion every two weeks after checking her levels to prevent the low levels of magnesium and potassium in hopes of preventing the terrible pain and cramping of her hands and face. Unfortunately even part-time work was not an option with all the amount of absenteeism due to her health issues and infusion every two weeks was drain and hard on her veins. When Ohio finally came through with the change, we came to see you in December of 2001.
This is what we heard at our last appointment:
So we were so hopeful to finally see you after all the hurdles with the move, insurance, etc. to get her back to the state that allowed you to see her by your hospital insurance rules. At our second appointment you said Carly looked good and your solution was, “find a rich guy, get married, and have babies”. Carly and I were so taken back, that we wondered where Dr. K was, because the man we heard talking did not resemble the caring physician that we had come to respect so much over the years, to believe and trust his word, and love. Why did we exert soooo much effort to move Carly back, switch all her doctors and Medicaid back to Ohio to hear this comment form you, when previously you comments had led us to believe something so entirely different? We were devastated to say the least. All the hope and promise of another option of getter better, working even part-time, or having a somewhat normal life for Carly. Getting married with her disability is not exactly a magnet for attracting a nice guy, let alone one that can handle all her health issues at this juncture. Oh there have been plenty of guys as first, but when they see a day in the life of “Carly”, they tend to get “the deer in headlights look” and eventually tell her that they cannot handle all of her health issues. And yes, I have told her that she has not found the right man, but this happens over and over again for the last 9 years.
Since the last meeting 5 months ago, Carly feels she is not living and she has lost hope of getting better to where she can have a somewhat normal life. She believes she is a burden to us and is unable to be a productive person in society. You took “hope” away that day last December and I was then and am now scared that Carly is going to one day feel that there is no point in living without any hope of change. She told me she always worried that someday you would say there is nothing else we can do for you and last December that day came to pass.
I am writing in hopes that you would reconsider the options or lack of options for Carly. I am even willing to be tested to see if I can donate part of my intestines to her as an option. Please know that Carly does not know I am writing you and wants no pity from anyone, but I love my daughter and would do anything for her as I know you would for your sons, therefore I hope and pray that somehow there is still a chance for a better life for our Carly.
Me….exposed and vulnerable, yet hoping to take the next step to self-acceptance. I guess miracles really do happen, and sometimes they come from the heart of a mother.
Copyright © , 2012 Carly Speelman