Monday, March 25, 2013

Ebony.com

In October 2012,  I did a phone interview with Ebony magazine for Ebony.com.


Friday, they posted that interview to their website.

Here is the link. Survivor Story.. A Mother's Miracle Baby....



Little Miss Mylah is becoming quite the celebrity...


Also, here are some corrections to the story and some points I wish to clarify just in case there is any confusion.

Walk With Me is a Pediatric Palliative Care program that shifts to Hospice should you need it. They were NEVER negative. They have proved to be a great resource for us. I was initially skeptical of meeting them, but once I saw that they wanted to support us and were very positive I was glad that we did meet. The hospital had explained that it was hospice and never informed me that it was a pallitive care program.

Juwan and I attempted to get pregnant for 2 years not three.

The OBGYN that the story speaks about is the maternal-fetal specialist physician from the hospital where I delivered, NOT my obgyn. She was VERY supportive in everything I wanted.

My sister Toya and I went through 4 weeks of training at the hospital for Mylah's ventilator and trach, not Juwan. He trained on weekends when he didn't have to work.

I prefer that you go to the SOFT website for information about Trisomy 18.  I did not find the Trisomy foundation (where the story links) to be very positive or supportive of me and my situation. They are not an organization that I support personally because I feel that they do not promote LIFE.


Since the interview Mylah has learned to talk over her trach, we are able to hear her voice now.

Overall I am very happy with the story that was written and I hope it brings awareness to Trisomy 18.


GIfts....

Mylah received an abundance of love in the form of gifts for her birthday. We would like to thank everyone for their lovely presents.

One gift in particular has a special meaning to us and I would like to share it with you.


video

Sunday, March 24, 2013

A Letter to My Daughter..... One Year Later....

Last year the night before I delivered, I wrote a letter to my daughter Mylah.

At the time, I wasn't sure of the future.
I didn't know how we would meet. I just prayed that the Lord would show his grace and allow me to meet her alive. He granted my request and so much more. As one year has passed since her birth so much has happened in our lives. We have matured and changed. I want to share this letter with you and I pray it has an impact on your relationship with your own mother.


My Dearest Mylah,

Well, well, well... It's been one whole year since you were born into this world.  In my last letter, I was preparing to meet you. I was preparing to see the child that I was carrying. I had so many questions and wondered all about you.  Then I met you. From the start you were counted out, but you continued to grow and fight, you showed everyone how strong you really were. I remember bringing you home. I was exhausted at times and most times I was scared. The 1st couple months I would wake up to make sure your chest was rising. I was so scared you would leave before I got the chance to know you. I remembered how you would coo every morning, it was your way of telling me "good morning". I loved our days at home together.

In the beginning you were so small. Your heart condition required you to be fed by NG tube. I bought stickers for you so that people would see that although you were different it was still ok, you were still just like them. I used to be scared to take you in public, not because of the many stares, but the germs. You getting sick was my biggest fear. I heard so many stories about children with Trisomy 18 dying while sick, I found myself being overcome with anxiety when I had to take you out. I just wanted to be home, inside our house safe from all the germs. I knew that I couldn't be this way forever because I wanted you to be as normal as possible. I wanted you to experience life and that life was not being stuck within the walls of our home.

We worked hard with your aunts from Walk With Me to get you where you needed to be so that you could take on heart surgery. I always knew you would have your heart repaired it was just when.  We prayed, attended appointments and many consultations and finally had made a decision to go with the Pulmonary Artery Banding, but Dr. Ohye said it wouldn't help you. Your saturations were not good enough for the band to be effective and he recommended the full repair. I was so upset and scared. He didn't pressure us for a decision, but I remember him saying "Let her write her own story". He would support our decision. I remembered having peace because I knew he was the one sent to operate on you.

On July 5, 2012 you underwent open heart surgery. I was terrified of the outcome. We gathered at the hospital with others to wait it out. I remember being sick all day. My nerves were bad. Then doctor Ohye emerged and said the you were "ok". You had survived what others said you could never have. You had a new start, another chance to LIVE.

The 1st time I saw you in the ICU it was so overwhelming. You were hooked up to so many machines. The room was very noisy. You were surrounded by other children, babies, who had surgery and their moms & dads were praying for them just as we prayed for you. The bed seemed to swallow your little 7lb body.  The staff placed a patriotic headband on your head. Your scar was covered, you didn't look like the baby I had just handed off for surgery. I felt awful, I hated myself for putting you through that. I wondered if I made the right decision. For days I beat myself up about the decision. Each time something happened I blamed myself. Each time I returned to work I beat myself up. But once again you showed me what being strong meant. You started to recover and was out of that ICU in no time. You started to become a little superstar.  Everyone was so impressed with your recovery and progress. We had a little setback on your 4 month birthday. You were having trouble breathing and at that moment I thought I was witnessing your last minutes of life.  I felt so helpless and the only thing I knew to do was call on our Heavenly Father. I asked him not to take you. I asked him to spare your life. I shouted that I knew his abilities and what I had seen him do. He answered my prayer.

You ended up getting a trach. I remember fearing this from the beginning. I never wanted this for you. I was scared. It literally terrified me.  When I signed the consent I cried. I felt so bad, like I had signed your life away. Another surgery. We hadn't planned for this and now you had to go through something else. I wasn't sure if your small body was strong enough to withstand it. But in Mylah style you pulled through just fine and our new way of life began.

We spent the next weeks learning about your trach and your vent. It was so scary at first, I wasn't sure I could do it, but I knew I had to. For you. You needed me just as much as I needed you.  Your trach and vent then became like second nature to me it was our new "normal".

We brought you home after 81 days in the hospital and life at home began. We were met with some new challenges but we slowly conquered each one. You were met with a obstacle in December and it landed us back in the hospital for another week, but once again you bounced back.

We celebrated your first Christmas, New Years, and Valentines Day.  You made strides in certain areas, you learned to hold you head up more, you began grabbing and holding things. You smiled more and more, we were overjoyed to hear that sweet voice again. The first time I heard it I cried. It was the sweetest sound that I missed hearing for so long.

As your 1st birthday approached my nerves began to get the best of me. I had been planning your party for almost a year. I stopped then started again. I couldn't be too confident. I prayed but sadly I wasn't still sure. I just wanted to have the luxury of not having to worry about you getting sick, suddenly being hospitalized or dying; which is my greatest fear.

Mylah you continue to defy odds everyday. I am amazed and so proud of all that you do. You have shown me how to love, how to appreciate the little things. You have shown me that it's okay to be scared. I learned how to celebrate more and complain less. You give me drive that I didn't know I had. You also taught me how to fight and slowly I'm getting my voice.  You created in me a passion for helping those who may not be able to speak up.  I've never been scared to speak in front of people and
I'm realizing that I will be needing that confidence more now that our story is gaining attention. There were days when I wasn't sure I could do it, moments when I didn't think I could make it, but your smile always made those feelings go away.

Mylah I would just like to thank you for being you. I've never loved this way before. You have taught me so much and I know I still have plenty to learn. I'm so proud to be your mother and I hope I make you proud.

Happy 1st Birthday Mylah....

GODS sweetest Angel & I pray we have many more years together!

Love your mommy.

The Birthday Girl


Happy 1st Birthday! Mylah!!!

Well the day came!

A day I wasn't too sure of.

A day I was told would never arrive.

I wondered whether THIS day would be a day of celebration or sadness.

For weeks! leading up til today I was nervous, I wasn't sure, I just couldn't quite put my hand on it.

I planned, I strategized, I arranged all for today.

Yesterday we celebrated with a number of family and friends (who have become family) our daughters 1st birthday.

Her party was beautiful and everything I wanted it to be. Not only did we celebrate Mylah, but I wanted to celebrate those who had been there for us all this time. Those who called, sent text messages, commented on pictures, posted on social media, prayed, meditated and sent positivity our way.

Last year, on Saturday, March 24, 2012 at 5:11 am a beautiful angel was born to this earth. For years I wondered what my purpose was. Why was I put here? What is my job? I know that I was placed here for her. I was chosen to carry and delivery this wonderful miracle. I was picked to usher and advocate for this child. She was chosen for me. She was sent to show me my purpose. She was designed to build by faith. She was created to instill HOPE. The HOPE of HIM.

I wrote "mom" on her card and it looked so neat. I feel so lucky to have Mylah. She is beautiful and precious and HE picked me for her.  I know she has a purpose and I know that I am to share her story as much as I can, that's what I'm here for. GOD will get all the glory. It's just so amazing to see how my little girl is touching and inspiring so many people and yet still helping me grow as a person. She has taught me so many things. I learn from her everyday. I've never met another child like her and she's all mine.

I would like to say Thank you to everyone who came to celebrate with us yesterday. I hope you had a wonderful time. I would like to thank all of those who assisted in making my daughters party a beautiful and enjoyable day. We Love you all....






Friday, March 1, 2013

March!



Today is the first day of what I hope & pray is a ONE-DERFUL month!

It's Trisomy Awareness month! March! 31 days to honor all the Trisomy families. The babies who have not yet been born, babies/children who are going home for the 1st, 2nd, or 3rd time, the children reaching their milestones-1st, 2nd, 3rd-ANY birthday.  Those undergoing long, enduring operations to repair heart defects, floppy airways, orthopedic issues, jaw distractions. Those who fought against the odds& now have a special place right next to our heavenly Father.  These STRONG children and awesome angels! Some counted out from the beginning, never given a chance. 

March is a month when we wear our light blue & our ribbons to show our support for the many families who are traveling the journey of the unknown. Those who have to make life altering decisions. Decisions that not only affect the parents, but also grandparents, aunts, uncles, cousins, friends, teachers, nurses, & DOCTORS! 

Nothing can prepare you for this journey, but I can guarantee it makes you stronger with each step. You will NEVER be the same. 

It's the month dedicated to the extra! The extra chormosome. Something so small, but yet so BIG! 

I am a PROUD Trisomy mother. I'm not ashamed of my daughter. I don't regret one decision that I've had to make thus far. I'm thankful for the opportunities that we've been given. I'm grateful for hospitals like C.S. Mott Children's Hospital in Ann Arbor, MI-where my baby was given a chance! I'm also thankful for hospitals like the one i birthed at. I received my first lesson in tolerance that taught me that I would need to develop a loud strong voice for my daughter and thick skin-(because not everyone agrees with you)

I am PROUD! Proud that Mylah has a feisty personality. If I had chose to abort my child simply because of her extra chromosome, I wouldn't have the pleasure of knowing that she is very ticklish and loves to smile. I wouldn't know what it's like to paint my daughters toes. I wouldn't be able to go to the store and continuously buy her clothes that she really doesn't need.  I wouldn't be looking forward to her next accomplishment. I wouldn't be praying to end the year free from ventilator support 24/7. I wouldn't have spent the summer in the hospital meeting some wonderful people as she RECOVERED from open heart surgery.  All these things and so much more wouldn't mean so much to me had I chose the left turn instead of right at that significant fork in the road. 

Thankfully, I have the best GPS there is available. My GOD is an awesome GOD. He is able to do exceedingly and abundantly above all things!  He has the last say. He continues to show me that he is in full control and that he felt I was worthy of such a wonderful miracle named Mylah. I'll never be able to thank him enough. He gets ALL THE PRAISE and ALL THE GLORY!!!!!! because it is only by his grace that my child, born 5lbs 3oz, survived open heart surgery weighing 7 lbs., suffered respiratory distress which resulted in a trach and vent, came home and continues to develop more and more each day. Reaching, Kicking, Laughing, & Cooing. All the things they say Trisomy 18 babies CAN'T & WON't do.


"It's only prolonging the inevitable"

"The baby is going to die anyway so there is no use in repairing her heart"

Words that will forever play in my head. No matter what I do or where I go I will always hear those words. 

When I look at Mylah the smile on her face lets me know that those words have no power at all and that GOD has all the POWER and he's got the Trisomy 18 babies & children... in his hands....