The Realization

It was Thursday, July 19th and Max had just gotten home from work, and as was the usual we played Xbox; this is our "quality" time together.  Sometime after we began playing, however Max paused the game and turned to me and said, "You know? Today I realized that Taylor will always need us and have problems. When we were on our walk she looked at me and I saw it in her face, that she had a syndrome." I began sobbin and he too cried, even now as I’m thinking about that day I want to cry as well.  And here I thought we’d made such strides, yet that simple conversation had brought back so many feelings I thought I’d overcome.

That same night, Max and I talked about what we both understood about Taylor’s condition and as we did we both hugged each other as we had such grief for our daughter. I knew in my heart that as a result of Taylor’s condition that it’d be likely that she would always depend on us for everything and I had silently coped with that fact.  But that night to hear it from Max’s mouth and to see that it had finally sank in, that Max had finally accepted this reality it was overwhelming and moving to say the least.

That night I called my father and spoke to him on the phone, I needed advise, comfort, reassurance…then later I cried myself to sleep. Hours passed and I woke up with puffy eyes and a heavy heart and to some point resentful. The following day I spoke to my cousin Trisha, who made me realize that what was happening was okay. After all I had already dealt with the grief and had moved past it and was working to control my emotions, yet Max was just getting around to grasping the reality of it all.

Men walk out on their kids every day for no other reason than to be freed from responsibility, a sick child and a hysterical mother would be an even a better reason for a man to walk away, but not Max, he has been there and stuck by us and has given me the strength I need to deal with our daily hurdles.  Max is a remarkable man and amazing father. Frankly, I need Taylor more then she needs me and I need Max more then he needs me.

I am grateful everyday that I have Max, Alexus, Jacob, and Taylor close to my heart and in my life.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

Taylo'rs First Surgery

The days leading up to Taylor’s first surgery, I found myself awake at three in the morning cleaning my house. Aware that such hyper activity was unhealthy, I would make myself rest and I would literally lie in my bed completely exhausted but awake for hours unable to fall sleep; my mind was racing and I felt as if I couldn’t shut down.  

By the time Thursday morning rolled around the day of the surgery I had had very little sleep that week and I was extremely fatigued. Soothing my nerves immediately was seeing Max’s parents at the hospital; it was comforting to know that we had such a wonderful support team.

Soon after arriving Taylor was admitted and we all waited patiently for the doctor to come and meet with us and I was calm and collected, I was holding it together very well and I was very proud of myself.
When the doctor came in to talk to us he explained the surgery as a routine/typical surgery.  He went on to explain in detail what he would be doing to Taylor's vocals. The doctor was very thorough and I was soon set at ease, I trusted in his competence and thought he would do a great job. And though no one ever wishes for their child to undergo surgery, I was very thankful that there was in fact a procedure that would help Taylor one day eat on her own.

Soon after my parents came into the room we met the anesthesiologist. We were asked the same series of questions that most people are asked when they’re about to be admitted at a regular hospital and then he asked, "Has anyone in your family had any problems with anesthesia?" I replied, "No and Taylor has had it twice and it’s always been fine." He then said, "She could be put to sleep twenty times and all it takes is that one time and never come out of it." My heart sank and I began to feel ill in my stomach holding back the tears of his response. He then reached over to take Taylor from me and I gave her one last kiss and hesitantly passed her to him.

As Max and my mom chatted, my dad and I trailed behind and I was trying hard to hold back tears, but they started to spring from my eyes. My dad closed in and putting his arm around me he said, "Everything will be okay." I knew it was not major surgery, but still I was having a hard time holding it together. Shortly thereafter, Max comforted me and we went for a short walk.

A few hours later a nurse came out and said, "Two people can go back to see Taylor Alvarez." Max and I jumped out of our seats. I remember wanting to race back there to the recuperation room to see my baby girl but had to fall back and civilly listen to the doctor as he explained the surgery in detail. Moments later when we were finally able to see Taylor I noticed that she was groggy still heavily sedated from the anesthesia.  The nurse however, was nice and allowed me to hold Taylor.

As I held my baby girl, I thanked God for taking such good care of her and thanked Him for ensuring that she smile another day.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

The Sadness

In this blog post I was to reach out to those dealing with 2Q37 Deletion Syndrome and tell you that you are not alone. I also want to help others who can relate in their own special way. So here it goes...

I am an open person and am comfortable sharing my feelings and as such I want to talk to you today about some of my darkest moments. As some of you already know, I’ve been through a lot in a short period of time and our lives (Max and I) were flipped upside down in the blink of an eye. So, it wasn’t a surprise that “Situational Depression" set in. Today, however, I’m getting better and stronger and I’m very proud of that. I have to hold it together, Taylor is my daughter and I need to be her support system.

My mom told me recently, "You're coping with the 'death' of a healthy baby and now you have a new baby you are getting used to." And my mother is right; I really am getting the hang of this. I’m learning a new way of life: a new way to feed a young child; better time management; more patience.

In all honesty, at first I did have my doubts though. Could I really do this? And as anxiety built up I cried many nights feeling sorry for myself, I sometimes still do. I just have to keep reminding myself that it is okay to be frustrated that I have to go through extra effort to take care of my daughter; to be frustrated at seeing just how much Taylor tries to do something and is so close, but yet she just can't get it; to be frustrated that I have to clean up vomit instead of Cheerios. And worse for me yet, is the not knowing when/if my daughter will enjoy the taste of food.

One of my saddest notions for me now is to imagine Taylor unable to eat a piece of her 1^st Birthday cake.  This truly depresses me. I know that even as you’re reading this you may be thinking that this is ridiculous, it is just a cake, but to me it is much more. Taylor’s inability to enjoy a piece of cake is yet another aspect that separates her from other ‘normal’ children. Now, I know that I’ve been told that Taylor cannot distinguish between a ‘normal’ and ‘not so normal’ life, but I do.  It is very true what the others have said, “Taylor’s rare condition may very well be much harder on you the parents, than on her.”

And yet in spite of all the hardship how amazing it is to hear little comments such as:"You're a great mom." or "I couldn't do what you do.” help me. Or even seeing Taylor FINALLY accomplish something she has literally been working on for months. Or that incredible smile on her face when she’s moving freely in the water or sitting up like a big girl.

This sadness won’t always be a part of my life. But for now, I’m coping with things the best way I know how. Thankfully, I have had courage to get help and am working to prepare myself for those unexpected daily challenges as I pray for strength to hold everything together.

"Anyone can give up, it's the easiest thing in the world to do. But, to hold it together when everyone else would understand if you feel apart, that's true strength." - Anonymous

My Tiny Toes

I thought I’d share a funny story with you guys this week. 
 

When Taylor was barely a couple months old and before Max and I were aware of her syndrome we noticed a peculiar detail: every pair of shoes she owned were too big on her, even the newborn type. Now, if you’ve ever seen Taylor's closet you know the girl has outfits to last a lifetime and as far as I was concerned she needed to have the shoes to match, of course. So, when purchasing new shoes I took the concept of her clothing, 3mos-6mos; this should work right? Wrong! At least that was the case with Taylor.

So one day I’m having Taylor try different shoes on and none of them fit and I was appalled, how could these manufacturers not be able to get baby shoes right?! I was convinced all manufacturers were highly incompetent. Now, several months later fully aware that 2Q37 Deletion Syndrome children are prone to having smaller feet I laugh at how I quickly I generalized and lumped ALL manufactures in the same inept category. And yes, don’t worry, I won’t be writing any further complaint letters to Old Navy and Gap. 

Luckily for us and Taylor is now able to wear shoes. Sooooo naturally, I’ve stocked up on some very cute, adorable shoes.

We’ve been advised that the day Taylor is able to walk that it is likely to be somewhat clumsy and without fear. So, if you should ever stumble across a cute little dark haired, green eyed girl making a wobbly run for the curb try your best to catch her before she falls flat on her face. I would be extremely appreciative J

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.