Wednesday, November 28, 2012

Thanksgiving....

This holiday weekend was one of so much JOY!

Thanksgiving has a whole new meaning to me. Growing up I have so many happy memories that are associated with the holiday season. Memories of family, love, and fun!
I cooked a few things this Thanksgiving. Peach Cobbler, 7-Up Pound cake and Chicken & Dumplings (from scratch-there's no other way).  I remember the taste of my grandmother's chicken & dumplings. When she passed, I was 9 but didn't know the profound effect that she would have on my life. We spent every weekday with her when I was younger and I remember that she always fed us very well. She was a great cook and I know that I draw from her, especially during the holidays.

My mother has always prepared our holiday meal. As I've gotten older I help with some of the things that I'm able to prepare. I have a vivid memory of waking up on Thanksgiving to the smells of the holiday. Hearing the jingle and ring of Christmas music playing on the radio. Walking downstairs to foggy windows and seeing my mother cooking in the kitchen. Those foggy windows bring me so much happiness because they mean so much to me. They are the preview of whats to come; Family & Fun.

So for the past week or so we've experienced just that.... Family & Fun.

Mylah attended her 1st birthday party since being home from CS Mott. She did very well. No emergencies or panic situations. I think it was me who needed the chill pill. Most people at the party already knew about Mylah and have been supporting us on this journey. There were a few parents who gave us some stares but in a good way. It's always so funny to see parents interacting with their children and when we come in with Mylah their demeanor changes.  I could tell some wanted to ask questions, but refrained.

Last Sunday, Mylah and another phenomenal little girl were featured in my mother's church Transformation concert.  At the end of the concert a song called He's Able by Deitrick Haddon was played and the stories of how these 2 miracle children defied the odds and stunned physicians with their perseverance.  I missed the concert because the noise level was too loud for Mylah, so we were in the basement of the church,  but I was moved to tears as we walked out on stage, holding our miracle child for the entire church to see. It was truly a moment I will never forget.

Friday evening, was the benefit skating party. There was a large turnout of support for Mylah. Initially, I hadn't planned to take her for long, but we were having such a great time I decided to let her stay. I was so happy so many people finally got a chance to meet her.  My aunt and cousins surprised me by driving in from Ohio just to support our family. It meant so much to me.   Sometimes when you go through trials, family is all you have, & sadly not everyone has family like I do.  It was just nice to have the presence & support outside my immediate family. Those who wanted to be there were there &  I appreciate the change in schedules, the traveling and any other sacrifices made to come and support us.  I also appreciate my friend Antirrell & his company Good Medicine Entertainment for willingly accepting the suggestion to help us.  When he was approached by someone with the idea he didn't give it a second thought. It's amazing the amount of people this little 11lb little girl has touched.

Saturday, I had the honor of attending a baby shower to celebrate the new LIFE expected by a friend of mine. She and her husband have dealt with their own personal trial as they've embarked on their journey into parenthood.   The shower was full of happiness & joy for these parents.  It was during this celebration, that I received confirmation. When you have an open, caring, & compassionate heart that is so willing to help others; expecting nothing in return, that same positivity you exude is returned to you in a number of ways.

Saturday was also a very special day as we celebrated Mylah's 8 month birthday.  I always love the looks on the faces of those who we order her cakes from when I tell them how the cakes should read. Eyebrows shift a little and that "are you sure" look is one that I've encountered a few times. You can hear the hesitation in their voices, so I briefly explain why the cake indicates a month milestone rather than a year.

Mylah also celebrated her 1st Thanksgiving this year. Such an appropriate 1st holiday to celebrate almost 2 months out of the hospital.  I have so much to be thankful for in her. She continues to astonish me each day.  I must admit I got a little sad while cooking Wednesday evening, because I wondered will Mylah be able to hold memories in her heart of her mother, father, and family during the holidays like I do?  She's still too young for us to fully understand what affects the Trisomy 18 has on her brain's cognitive & developmental abilities.  I'm most certainly thankful for all the things that Mylah has done thus far and I'm already thankful for what she will do, but it is a daily struggle for me. In the interactions with my friends and their children I'm constantly reminded of the things that Mylah can't yet do or may never do.  I watch how Mylah remains the size of a 2-3 month old, wearing 0-3 month clothing at 8 months old, and how soon the baby of another friend will surpass Mylah in size and weight.

The uncertainty is still there. Will she walk? Will she talk? Will she know how to count to 10 or recite her ABC's? Will she know that Roses are Red and Violets are Blue? Yet despite the wonder, I remain positive.  I know she will get her voice back and soon I'll hear the sweet sound of my daughter cooing, crying, laughing. I know that there will be things that she may not be able to do, but there will be so much more that she will be able accomplish.  Those accomplishments are so huge to us. Odds that she'll continue to defy.  I try to remind myself of this very statement when I feel myself getting a little down or frustrated.

Though there are days when I want to give up, moments when I wish a NG tube in her nose was all I had to worry about, times I wish all the medical visitations would stop, hours I long for privacy from the home nursing, nights I wish I didn't have to stay up to "monitor" my daughter to make sure she's still breathing and responsive I wouldn't change it for the world. I'm forever thankful for my daughter and this journey. It's made me stronger and I think those who struggle to get what they want love harder and are more appreciate of their blessings.


Mylah's 1st Thanksgiving

Ready for Skating!!!!

Monday, November 12, 2012

Am I Enough???

I often wonder am I enough? Am I giving enough? As a wife, mother, sister, daughter, aunt, and friend.

Going through this journey I realize that I have to spread myself very thin. I have to be a wife to my husband. Making sure that I don't forget to let him know how much he means to me, making sure I tell him how much I love him and still trying to find a way somewhere in between work, school, and the rest of life for US.

As a sister, aunt, daughter, and friend am I able to give back to the people I love. Can I rejoice in their joys, cry during their sorrows, & give direction when needed? How do I do this NOW? With all that is going on in MY life.

Then as a mother am I giving enough to Mylah?  Some days I find myself staring at her in amazement. Amazed at her strength, determination, and complacency. She has no idea what is going on around her. She is so content. I wonder does she know how much I love her? How much I care for her and that I would do anything in my power to provide for her and to make sure that she has the life that she deserves.

There are moments however when I need a break from all of it. I just want to get away and not carry the load with me for a day. How do I do that and feel like a HORRIBLE mother? How can I be enough for ME?

When I don't feel like picking her up, why does it make me feel like I'm neglecting her. When I hold her for 5 minutes, but put her back in her crib, I feel like I'm harming her in some way.  When I rush out to go to the store I'm happy to get away, but soon after I'm ready to be back at home because I need her to know that I care for her and would never abandon her.

I feel guilty about leaving Mylah, but I want to get away. How is this possible to feel 2 different emotions at the same time. Then I think maybe I'm not giving enough as a mother. No matter how much I clean the house to try and shield her from germs, buy her things, smile at her, kiss her cheeks, stretch her arms to make her laugh, go to work to provide, attend school so that I can obtain the degree needed in order to make more money, no matter how late I stay up to make sure she has what she needs, and no matter how many phone calls & emails I send to the various pharmacies, medical supply companies and physicians to make sure she has everything she needs medically I still feel like I'm cheating her out of something. I'm just not sure what it is IF it's anything at all. All I know is that I feel bad.

It's very hard to know that I'm doing all I can for her when I constantly feel like I should be doing more.
It's also hard because in doing the things that I need to do I feel guilty about doing those things.

Then in between all these mixed emotions, in between the Trach changes, vent check's, tube feedings, Trach care, Gtube care, and diaper changes among other regular baby things I'm supposed to make time for myself and my husband, my family and friends. When someone finds the recipe for that I wish they'd pass it along.