Deprivation

One week has pasted since I have posted any new information about Ivey, or anything else for that matter. I have attempted several drafts, but hesitate to post them. And several of the drafts I have deleted completely. Why? Optimism is at a low. I am mentally drained, physically depleted and emotionally broken. No matter how up beat I have tried to start each post, they all end in sallow mood. Therefore, I have avoided my computer all together.

I have found over the course of the past few months that deprivation tends to multiply emotions. The past eleven days have consumed every ounce of drive and togetherness that I strive to retain. Every nerve in my body is more sensitive; my emotions are completely on my sleeves. Eleven days ago I knew the schedule that we were about to adhere to was going to be more taxing than anything that we have ever experienced. I was prepared for Ivey to come home. No mistaking it, I was completely ready. However, I was not prepared for other events of the past few days to unfold in the order and manner in which they did.

If I were being completely honest with you, there are several things I know about Ivey that only Matt and I speak of amongst ourselves. A life involving seizures is one of those things. We had hoped Ivey had dodged this bullet. Quiet frankly, I am not so concerned about coping with her seizures. I have adapted to her resume' of certainties and uncertainties. This particular trait can be controlled, so unlike many of Ivey's other medical issues.

I have sat in many doctors' offices over the course of the past 7 months. This is the list as of today: pediatrician, cardiologist, pulmonologist, geneticist, neurologist, ophthalmologist, orthopedic surgeon, cranio facial plastic surgeon, orthodontist, ENT, gastroenterologist, ocularist. This does not include specialty areas such as the nutrionist, respiratory therapist, physical therapist, occupational therapist, speech therapist, and at home nursing. They are all specialist in their fields; they are some of the best. These doctors have forgotten more information than I could ever remember. And yet, they all have asked me questions concerning Ivey that lay the course of her fate in my hands. I am the Mom. You may not grasp the reality of the rarity of Ivey's diagnosis. It is not in medical books, you can not find it on the internet, for if you type in chromosome 21 deletion, you will eventually find Ivey's blog. Case studies involving other infants with Ivey's diagnosis are limited to less than 2 dozen-ever. There is nothing concrete.

So I sit across from brilliant men and women who ask me to tell them about my daughter, my observations. Matt is very much a part of all of this; none-the-less, all eyes turn to me because I AM THE MOM. Various physicians have dealt with individual issues that are known to Ivey; however, not one has ever seen a child like her as a whole. The pressure is at times unbearable, and yet it is always manageable.

There are three days that have pushed me to a place I hope none of you will ever visit. One, the highest and lowest point in my life - Ivey's birth. Two, the first day after Ivey was trached and I had to watch her lay in a bed sedated on a paralytic and I was barely allowed to touch her, let alone hold her. Three, Monday morning watching her seize and not being able to do one thing to help her or stop it. All three days, my instinct as a Mother to save my child were beyond her reach. I can handle doctors. I can not accept the feeling of helplessness and failure as a mom.

Today was one of our tougher days. The past two weekends Alicia was here. She met us at the door Ivey's first night at home. Ivey will miss her; Knox and Walker will miss her; Matt and I will miss her. This morning we said goodbye. -I can not talk about it right now.-

I think that the arrival of the Holidays has also added a spin to our whirlwind life. This year there is no Christmas card going out. The idea of shopping for Christmas sends me into hives. Our days are so scheduled and determined I can not schedule in enough time for fluff outings. (If this post makes any since at all, I will be lucky, for I keep having to stop my train of thought to silence the annoying false alarm of the pulse-ox machine.) I did get to go to a Christmas party this past week. It was wonderful to be out with friends. It is one of the few things I have done in the past 7 months that expanded beyond a handful of close friends who protect me at all times. It was thrilling and dreadfully lonely all at the same time. I realized how much I miss seeing everyone. I realized a life left behind that will never return.

All said and done, we made it through a tough week. I pray that this next week will prove to be good, with no trips to the hospital, no new tricks for Ivey, and two sweet boys who will not fear what tomorrow will bring. No, take that all back. I hope tomorrow will prove to be good with no unexpected events. Let's just take this one day at a time!