Thursday, October 25, 2012

Acts of Kindness....

We have been on the receiving end of these acts lately.

If you follow my blog you may have read my post  Pride...do I have too much?

I detailed how it is VERY hard for me to allow people to do things for me. I fully recognize that I have surrounded myself with people who are like me in many ways. People want to do something, they WANT to help and get nothing in return. That's how I am. I'm always on the other end however,  I know how it feels to want to do something for someone willingly with no attachments or expectations in return. It's in my heart.

Well it was on a few of my friends hearts to want to help us.

A friend of mine who has a christian entertainment company; Good Medicine Entertainment puts on a gospel skating party every year before his annual play. This year he added Mylah to his efforts after a discussion among a circle of friends we share.

At first I wanted to decline his request, only because I know how people are. There may be whispers and/or questions, but what those people don't realize is that this is a blessing. To have people care so much about us, our well being and the comfort of our family is great and no matter what you do & how you do it people are going to have something to say, be it positive or negative.

I appreciate everything our friends have done for us. No matter the size we are grateful for all acts of kindness.  We love that we are loved and that our daughter is LOVED.

I've realized that I've prayed and asked GOD to step in & take control over this situation. I'm learning still to realize when he's allowing that to happen and to allow the people he's sent to do what he's instructed them to do.


ALSO
Please support my friend Tirrell McCoy as he brings his 6th production to the stage!
If you are looking for something the entire family can enjoy, don't miss this stage play! 



Friday, October 19, 2012

What A Difference a Year Makes.....

This day October, 19, 2011... I remember it so vividly.

Waking up, not knowing what to expect. Anticipation had been building for weeks. I wouldn't be at work to cross THIS day off my calendar. I made it. No more wondering. We needed to be on time. I wanted everything to go right. I had no expectations. Either way I would be happy but I knew how I wished the outcome would be.
As we prepared to leave the house, I knew that in a few hours my life would no longer be the same. I was ready to jump right into this new chapter.
Riding down the freeway my mind began to wander. Thoughts ran through my head. Butterflies in my stomach.

"What do you want, a boy or girl?" 

This question is posed to pregnant women time and time again. Most times women respond by saying,

 "It doesn't matter, I just want a healthy baby"

But what would YOU do if the baby you carried, the baby you prayed for, the child you longed for, the daughter you wished for, or the son you tried years for wasn't healthy?

What would YOU do if the ultrasound appointment you made on your 31st birthday didn't go as planned? What if it threw you into a world that is seldom seen? 

As I laid on the table, the tech at my stomach, I could see tell everyone in the room wanted to know what this baby was? A girl or boy?  Silence................ 

"There is something wrong" I thought to myself, "I know it is, this is taking too long". With each minute that passed, I grew more & more concerned. I tried to get rid of the thoughts in my head, but in my gut I knew I was going to hear something that I didn't want to hear. I wasn't prepared. 
Juwan and I tried 2 years for THIS baby.  I did everything right. I'd taken prenatal vitamins for 3 years to prepare for THIS moment. It's my birthday, I am only prepared for good news.  Who gets bad news on their birthday? I picked this day to find out the sex of my baby because I knew it would be the best present I could ever get.  I'm supposed to go on a shopping binge after this appointment. I have it all planned out. 

I tried to calm myself down...... Positive thoughts... Positive thoughts. 

Time passed. The doctor entered. He looked. He left. The tech looked more. We were moved. The doctor looked more. He confirmed my worst fears. There was something wrong with my baby. 
I cried continuously for days. 

Earlier this week I got kind of down. Only because I remember how it felt last year. I got upset because I thought that I'd ruined my birthdate because it would forever be overcast with receiving bad news. 
Then I realized that my 31st birthday was the turning point in my life. It was the beginning of a journey that would test my strength, perseverance, determination, and faith. 


1 year ago. I googled Trisomy 18 and was introduced to something that would change my life. Who knew that a condition that I never heard of would become part of my everyday conversations. 

Trisomy 18 has turned me into a educator, motivator, supporter, confidante, & advocate. 

One year ago I never expected to be where I am today. I've learned so much, experienced much more and gained an abundance of knowledge. I know my purpose. 

Mylah isn't how I pictured her. She's not the baby I saw in my dreams. She is made the way GOD wanted her to be. I wouldn't want her any other way, because he made her PERFECT for me. 

Thank you all for your prayers this last year. The support, love, care & concern has REALLY helped me and I will continue to press on. 

I can do all this through him who gives me strength.
Philippians 4:13 (NIV)






Monday, October 15, 2012

Untitled...

The ability to conceive & bear children doesn't come as easy to some women as it does for others.  If you are a woman who has never had an issue getting pregnant & STAYING that way, you should be thankful.

I'm finding on this journey that many women long to have children. Some picture their lives with children at a very young age. Personally my daydreams about my family started in my teens; A boy & a girl; because I always felt a girl should have a older brother to protect & annoy her.

Perfect Little Family right?....

For some that dream is a little harder to achieve. As I travel this journey I'm connecting with women who have lost children to miscarriage early in their pregnancies and some later all due to various reasons.
I only knew a handful of people who suffered from the loss of a child but now I'm finding more and more women have experienced the pain and some multiple times.

For this very reason when I hear about a parent especially a mother neglecting their child/children I really take it to heart because I know that there are so many women who wish they could have a child to care for & nurture.  Carrying a child is a blessing. For 9 months you carry inside you a mini version of yourself. Anticipation gets stronger as time goes by.  Daydreaming about what your life is going to be like. Decisions regarding daycare, Pampers or Huggies? Breast milk or Formula? Pink or Blue?

Then in a instant that dream is snatched from your womb. Months, weeks, days; too early. Some go through the pain of having to birth a child with wings. A baby GOD decided to take back before he/she ever had a chance to live, breathe on this earth.  Leaving the parents to wonder, question, & attempt to grasp the shock of it all.

Not everyone gets the "healthy baby" that most people long for. Some go into the hospital expecting a baby but leave empty handed, no baby, only with the memories that they hold in their hearts.

Today is National Pregnancy Infant & Loss Remembrance Day. Today I say a special prayer for all those who have lost a child, suffered a miscarriage, & buried a child. May you find peace in the memories you hold in your heart and I pray GOD grants you the serenity to try again.



Monday, October 8, 2012

Newest Endeavor...

Home care nursing.

For most families it's a struggle. Why? You are entrusting the care of your medically challenged child to a complete stranger.  Most families have to work to make a living & the nursing helps make that possible.

Having no experience with home nursing I really didn't know what to expect. I have a number of friends who are nurses (RN's) and I guess you could say that I was spoiled. If I didn't know my nurse friends & strictly went on their work ethic I know that Mylah would be given the best care possible if they were her nurses.

I was warned that nursing would be the biggest adjustment once we were back home. BOY if this isn't the most HONEST TRUTH yet. Of course no one will take care of Mylah like we will, but I have high expectations.  Why wouldn't I?

It's known that children don't come with instructions... WELL in our case Mylah does. One mistake can mean life or death and I'm serious when it comes to her health. The care that she needs can't be underpar. There's no compromising or negotiating. It's black and white.

There is no more privacy. Having a person come into your home to provide care for our child 7 days a week for 10 potentially 12 hours a day. We are basically gaining another member of our household & our current house doesn't allow for us to be in one room and them caring for Mylah in another.  Since this is so new to me, I'm that mother who is present at all times. Watching, Observing, Instructing, Teaching. This will soon change as I prepare to return back to work. I've had 1 week to get "adjusted" to these new people, but what do you do when the ones who've been sent, don't fit the mold?

Home nursing is a service that is being provided and customer service is still critical. There have been some behaviors exhibited that have left me to question whether Juwan & I can survive on one income and I'm serious.  I need to be able to leave my home and have some sort of comfort in leaving Mylah in the hands of a trained professional.  The training is important, but the professional part is what is lacking.
I want people to feel comfortable, but not TOO comfortable. This last week has shown me what the other families struggle with & now their struggle is also ours.  It's a huge adjustment to go from living in the hospital for the 89 days to coming home expecting the same type of care but not receiving what I'd anticipated.  I want the best, the most attentive, one who cares, & listens. I need someone who will know what to do in an emergency and isn't just doing the work for a pay check. If there's no passion behind it I think this makes a HUGE difference.

Do you see why you have to pray over your children? And those who come in contact with them?



Tuesday, October 2, 2012

There's No Place Like Home....

Simply stated...

after 89 days, open heart surgery to repair multiple defects, a episode of respiratory distress, a surprise diagnosis of severe tracheomalacia, a tracheostomy, 4 weeks of ventilator training, electrical upgrade shenanigans, flu scare that delayed our discharge date.... We are HOME.. where our HEART is.

Never thought that I would spend summer 2012 in the hospital. When we drove up the highway that Thursday, July 5, 2012 I didn't think that it would take 89 days for us to bring Mylah home.
We are still getting settled, it's hectic, but I'm happy & thankful!

Thankful for all the things we've gone through, thankful for all the lessons I've learned, all the knowledge I've gained, & all the people we met. There were times when I didn't know if I could go on. Didn't know how much more I could take. At one point I thought I was witnessing my daughter's last breath. When I signed the surgical consent for her tracheostomy I felt like I was signing away her life.

The journey to this day has been a long one. Starting almost a year ago. Just 17 days from today's date one year ago is when it all started. I went to the hospital to get a ultrasound and to find out what the sex of my baby was and left not knowing what the future held. There were so many days of uncertainty. This morning in the shower I thought to myself "I think I've cried more in the 348 days than any other time of my life.  The tears however weren't all because of sadness. There were tears of joy, happiness, pain, gratefulness, amazement, defeat, & GLORY.

I know that the strength I draw is from no one but GOD. His love is everlasting.  He has blessed me in so many ways. I would be scared if having gone through what I've endured thus far NOT knowing how I made it. I'm fully aware that he has his hands on Mylah and my family. Ordering our steps each way, opening doors, but sending us down paths so that we gain the understanding we need to press forward.  I know that I have a calling to help others in the same situation.  I know that I'm supposed to help bring awareness to Trisomy 18. I know that I'm supposed to promote LIFE & HOPE, & FAITH.

Helping is what I was put on this earth to do. That's why my heart is the way it is and he used Mylah's heart to show me the way.

I'm always thankful for each person that has said a prayer for our family. Every token of love, support, and encouragement is GREATLY appreciated.

Thank you & please continue to pray for us!!!!


Mylah our own Little Victor!