Tuesday, December 20, 2011

Words....

should be chosen carefully.  "Think before you speak" is always a good quote to live by. You never know the impact your words could have on a person.

A friend & I were having a discussion about life; marriage, kids, etc. and it's so funny because it seems as soon as a man & woman wed the 1st question that comes after they say "I Do" is usually "When are you going to start having kids?".  Most people aren't even married a week before family members begin rushing them to start a family of their own. I think people forget that marriage itself is a JOB. It takes hard work, sacrifice, dedication, and so much more to make a marriage work and adding children to a new union is not always a great idea.

I can remember when Juwan & I wed, a co-worker gave me a bit of advice. She suggested waiting at least 7 years to start a family. I was 23 years old when we got married & Juwan was 27. When you are in your 20's you aren't really mature enough to understand what "MARRIAGE" really is. Yes, I thought I knew what it was, but honestly I didn't. When the co-worker suggested waiting 7 years, I can remember thinking "I'm not having children after 30 because that's too old". Well here I am 31 & almost 7 months pregnant!  I now understand what the co-worker meant when she advised us to wait; get to know each other, work out the kinks, travel, enjoy each other's company, THEN add children to the mix. 

I remember a relative of mine would ask me all the time "When are you gonna have a baby", "What are y'all waiting for, your not getting any younger", "When are you going to give your mom & dad a grandkid". Each time this relative asked me I would cringe inside and just want to cry.  I can recall one day being asked by this person and I was so fed up with the inquiries into my womb that I said with an attitude "You know you ask me all the time about me having some kids, what if I couldn't have children and just didn't tell you?" (not knowing at the time that we would struggle to conceive) After this conversation the questions stopped.. I guess they got the point. 

When Juwan & I decided to try & conceive it was OUR choice alone, no one else. When a couple makes the decision to plan a pregnancy, most don't go into it thinking they won't be successful. Well we tried almost 2 years and it was a long emotional process.  Most couples don't disclose how many times they are having sex & that they are trying to conceive because honestly, it's no one's business.  During the time we were trying people would still inquire and it would hurt so bad because I would want to yell "Hey we are trying but it's not easy for everyone" but as I said before, it was nobody's business.

After some people found out we were pregnant (before Mylah's Trisomy 18 diagnosis) people responded to the news by saying "It's about time" which I found to be very RUDE and INSENSITIVE! What is it about time for? I want folks to know that if Juwan & I had our way, we would have conceived 2 years ago! But you know there's a man, you may have heard of him.. GOD? yeah HIM and HE had HIS plan for us.
What happened to "congrats" or "I'm happy for you"?  I got the "It's about time" response from more than one person and it really hurt me.

Speaking as a woman who at the time wanted to be a mother so bad, people should know that when you are trying month after month to conceive a child and you constantly get 1 line on the pregnancy test it is emotionally draining.  You begin to doubt yourself.  You start to feel like you are less of a woman.  You place blame on yourself & your spouse. You think GOD is punishing you for sins committed in your life.  You begin to think that you'll never be a mother and you'll always be the one borrowing kids to take to birthday parties & Disney on Ice. You'll always be the one crying inside on Mother's Day. You won't ever be able to buy your husband his 1st Father's Day card.  Each month you try to convince yourself that this month is going to be different because you calculated the days and you have the ovulation kits and fertility apps on your phone. But each month its the same result... Negative... No baby....   & each month the questions play in your head, the many inquiries into your womb and.... It hurts

The struggle to conceive has helped me to appreciate Mylah more than ever.. I'm so glad that things given to us according to our plan because honestly my marriage wasn't in a place it should have been to handle a baby.

Times are changing now as you can see. Most people are waiting to have children. They want to make sure they are established and can afford children. Most of all they are doing it when they are ready. So until you hear the news that they are expecting, some words of advice;
Keep the questions regarding her womb to yourself, When you do find out a husband & wife are expecting just express your happiness when you hear the good news that they have a blessing on the way!  I can guarantee you that those words will be welcomed

Sunday, December 11, 2011

Be Grateful....

that what we should be.  I was talking to a friend the other day & we were discussing parents & their children.  The discussion became very emotional when we started talking about parents who lack interest in being involved with their children.  She told me about a remark that a husband made to his spouse when he was asked to accompany his family to a winter festival. Having been to a recital the night before,  he indicated to his wife that their children were "in too much stuff & had too much going on". I began to cry & explain to her that this husband really needed to stop & think about what he was saying to his wife.  It really hurt me that someone who had multiple blessings from GOD would be so irritated at the request to simply do what a real man & father should be doing, spending quality time with his children.

I explained to my friend that Juwan & myself aren't sure how much time if any, we will get with Mylah. We don't know if it will be minutes, hours, days, weeks, months, or years. I told her that Juwan and I would give anything to be in that husbands shoes.  We are praying that we get to go to recitals, Christmas programs, graduations but we just don't know.

I think that parents need to stop sometimes and learn to appreciate what they've been given. Live in the NOW, in that very moment. When you are helping your child with his/her homework & you get frustrated because he/she isn't quite understanding as fast as you want them to, stop & Thank GOD that you have a child who is able to attend school & learn.  When your son/daughter asks for a toy don't scold them & remind them of how much you work to pay bills, put food on the table, or a roof over their head. Actually a parent is supposed to do all of these things. Be grateful that you & your child are able to have a conversation with each other.

Have conversations with your children, Hug them everyday, Kiss them every night, tell them "I LOVE YOU" every morning before you depart. Ask them "Do you know how much you mean to me?".  Have interest in what they are doing, Give them guidance, share your wisdom, spend time together, eat dinner at the table as a family with no distractions. 

The time you spend with your children is priceless & has a lasting effect on their lives.  I expressed to my friend that the father she spoke of would be very hurt if when his children got older & he started to show interest in them and what they were doing, but the feelings weren't mutual. By then it may be too late. No matter how hard he may wish he could turn back the hands of time, you may never get a second chance.

We don't know how much time we have on this earth & with each other.  Why not spend time nurturing the blessings that the LORD has blessed you with.

I don't know how much time GOD is going to allow Mylah to be mine, but I made a promise to create memories that will last a lifetime & to cherish the blessing he has given me in her no matter how long I have with her.

Friday, December 9, 2011

Filling in the Gaps.....

That’s what people have been doing lately.  I’ve always been a person to cherish the relationships that I share with others. I don’t use the term “friend” lightly, because it means so much to me.  As I get older, I’m finding out that people actually mean more to me than I probably mean to them.  I’m putting more into relationships & friendships but the same feelings are being returned. 
 
I understand that Mylah’s diagnosis has probably scared a lot of people.  They aren’t really sure how to react to the news.  People aren’t confident in what they should say. This situation has made it hard for most people, but it’s hardest for Juwan & me.

During this trying time I’m leaning on the LORD for strength and I’m so grateful for the supportive people that he has placed in our lives; my parents, friends, co-workers, & other families who have been down this road before.   When I feel like my strength is weakening and I begin to get sad, GOD sends these people in at the right time to lift me up. 
 
The other day I was kind of down, a coworker called me and stated that she had been reading the blog.  She said that the music mixed with the blog entries had brought her to tears so much that she was almost late for a doctor’s appt. We both laughed, but she doesn’t know how much the laughter I shared with her lifted my spirits that day.  I knew then that I could still remain strong & continue this fight.
 
Another young lady, who attended the same high school as me has been the source of tremendous support & encouragement these last few months.  It’s so funny because when we were told that Mylah had Trisomy 18, we were assured that she would die.  I immediately thought of her.  She had been through a tragic situation of her own and in that instance I knew I needed to speak to someone who had dealt with losing a baby.  

Most people say; “I understand how you feel” or “I understand what you’re going through” when really they cannot relate to your feelings or circumstance. During times like this it’s comforting to lean on someone who has been where you are.  I contemplated reaching out to her, but she & I only knew of each other. We never had a conversation or socialized in the same circle of friends so essentially it was like reaching out to a stranger.  I had to be careful with my approach because death is a very sensitive subject that is handled & processed differently by everyone. I wasn’t sure if I would be overstepping my boundaries and the last thing I wanted to do was cause her additional pain or ask her to go back to a place where she wasn’t ready to discuss especially with someone who she probably hadn’t exchanged more than a “hello” with.
 
To my surprise she beat me to the exchange. She contacted me on Facebook & ever since that day she has been giving me encouraging words & support. She’s helped me so much & I don’t think I will ever be able to express the gratitude I have for her.
 
GOD has been placing people in my life during this time. I know that some people are only in your life for a season. In THIS season I’m finding that some people who I consider good friends haven’t actually been there for me like I thought they would.  However, where they haven’t been HE has sent others in to Fill in the Gaps and I am forever thankful.

Thursday, December 8, 2011

Isn't It Funny....

how life works out? Years ago you could not have told me I would be in the place I'm in now.  We play out in our minds how our life & life's circumstances will be.  Most times you don't factor in the times of sadness, turmoil, heartache, and/or uncertainty. 

In my mind, my pregnancy was going to be perfect. I would be surrounded by all my friends & family.  My mom & I would go register for what the baby would need, we would hit the mall every weekend shopping for my little bundle of joy.  My husband with my father's help would set up the furniture for Baby Perkins' nursery.  My sisters would help me clean my house from top to bottom to prepare for the arrival for our little blessing because they would be so excited about the arrival their first nephew/niece. My best friends would help me plan my shower, I would immerse myself in every baby book I could find trying to memorize the numerous tips & tricks in raising a child. I would be fully prepared for the delivery of our first child. Baby Perkins would be born ... And we'd all live Happily Ever After.

My reality contains  some of what my dream was... My mom & I did go register a few weeks ago for my shower. In my dream I had a laundry list of items that I had researched & it would take hours for me to finish. The reality is that although I was excited about registering once I arrived at the store it was quite painful. The Trisomy diagnosis had actually stolen a lot of my joy. My sisters are excited but it seems that the excitement is clouded by the uncertainty.  The nursery is cluttered with my crafting items & furniture that I had anticipated selling but I lack the motivation to get it moving.  I only have one baby book, but I'm missing the book "What to Expect When You're Expecting a Trisomy Baby". No tips or tricks can prepare me for what's to come.  I sent out baby shower invites on Monday & people have been texting me with excitement but it seems like my excitement at times is short lived.

I know GOD is giving me the strength I need to get through each day & I'm continuing to lean on HIM. That's what I've decided to do, take it one day at a time & cherish each moment.  We took some maternity photos & in those pictures I was finally able to see what everyone else has been seeing.  My belly! A nice big growing belly with Mylah tucked inside. She's a active little something, she's mostly active during the evening & she LOVES pizza!

Those pictures really lifted my spirits, they brought happiness back to me. They confirmed that we have a fighter on our hands. I'm getting bigger which means she's getting bigger. She's not giving up. She's moving & telling me "mommy I'm still here with you".

This journey has showed me that nothing is perfect & things sometime will not turn out the way you want them. It doesn't mean you can't have what was in your dreams & in my dream I had a baby! That's been my prayer lately to meet my child & if GOD gives me that I know I can live Happily Ever After.

Tuesday, December 6, 2011

Blog updates...

I've updated the blog so that it's easier to post comments. A few people informed me that they made attempts to post comments but that the comments didn't save or they were required to input a security code which erased their comments. Well the blog isn't G-14 Top Secret so I've removed all of those requirements. You can post anonymously or using your name. I've also changed the layout of the music player because I think it was preventing viewers from scrolling on the page.

Hopefully, I've made it a little more user friendly. Thank you all for viewing and for posting your comments! We appreciate the love & support you've provided! Have a wonderful day!

Sunday, December 4, 2011

Tears.....

are cleansing. Tears cleanse you from the inside out. However, not all tears mean sadness. A sister cries tears when seeing her nephew born into this world,  A father cries tears when his son graduates college, A grandmother cries tears after her grandchild takes his first steps. A husband cries tears at the first sight of his bride.

Tears allow you to release whatever is inside of you. There are tears of happiness, tears of joy, tears of fear, tears of love, tears of triumph.  I've been crying a lot lately.  I've never been one to hold back my tears no matter the circumstance.  They have a way of coming out.  Tears don't equal defeat, they don't mean I'm giving up. My tears help me. They help me release the feelings I hold inside.

I was recently told to stop crying... Why? The child I'm carrying has been diagnosed with an abnormality that I've never heard of, I'm crying because I'm scared.  My baby has a heart defect, I'm crying because I want to take away any pain & suffering that she may endure but I can't.  Doctors have given up on my daughter before she's even taken her first breath, I'm crying because I'm angry.   God is preparing me for my testimony, I'm crying because I'm anxious & thankful.  My mother & father have both expressed how proud they are of me, I'm crying tears of joy.   I  listened to Marvin Sapp's He Has His Hands On You , I'm crying tears of confirmation, because I know nobody but GOD has given me the strength that I've acquired these last couple months. 

My tears are for many reasons.

I have good days & bad days, but the good outweigh the bad.  If you see me crying, just know that I'm not defeated, I'm not giving up.  I'm traveling a journey down a road that I've never traveled before. I'm scared of what's to come & what will be.  I'm trying to prepare myself for the days ahead. I'm remaining positive in GOD & his abilities.  I know that HE knows that Juwan & I can handle this & I love HIM for believing in us.   HE continues to Bless us & I'm crying because HE's an AWESOME GOD.  I'm not worthy of the blessing HE has given me in Mylah. HE chose me to be her mother & of all the gifts that I've received, she is the ultimate gift.  HE's made me a mother, Juwan a father & her life is the greatest gift that we could ever receive.


Tears are okay, they help me heal & I'm pretty sure there will be many more tears to come....... 



Monday, November 28, 2011

Footprints.....

When I was younger, I can recall being over my great-grandmother's house & seeing a copy of this poem in a picture frame on the wall. Being very young I wasn't able to grasp the full meaning of the poem.  I can remember the poem being very popular and many relatives & friends homes having the profound words displayed on walls, in curio cabinets, printed out folded into bibles; no matter where the poem was found it meant something to all those who carried it. 

Not until October 19, 2011 did I really come to understand how much power flowed between the sentences of the 200 word poem.  

I'm posting this poem as confirmation; confirmation that HE's always there, but mostly importantly that HE's there when you need HIM. When you're wondering; How you made it through, How you kept going, What guided you during the toughest time, Where you got the strength to go on, It was HIM & I'm THANKFUL that HE carried me & continues to carry me when I need HIM most!


Thursday, November 17, 2011

Approach With An Open Mind....

That's what I had to do today to prepare for this meeting. I'm so glad my mother convinced me to schedule this meeting, it was NOT what I thought it would be.  I thought these ladies were coming to my home to discuss how they would prepare us for the possible death of our child. I imagined the meeting would be cold, sad, & somber, it was the total opposite.  All the questions I had in my last blog posting were answered. The ladies were reassuring, inviting, welcoming, calming, & so pleasant to meet with. It's amazing how God brings the people you need into your life.

We will get the support & advocacy that I'd been hoping for.  Options were discussed. They will advocate for us so that the delivery is the experience we hoped it could be. They will help us create memories. They spoke about BOTH outcomes; Mylah's possible death & the best of all Mylah's LIFE. Which is something I felt hadn't been acknowledged. 

I wasn't really sure what was going to happen today, but when they left our house I felt a weight lifted off of me.  They helped me realize that everything I'd been feeling was valid. They stressed preparing for Mylah's birth so that the process is as easy as giving birth could be, but acknowledged the extras that come with delivering a child with Trisomy 18. They encouraged me to get the 3d ultrasound I had planned to do in Jan. They advised having my baby shower to celebrate Mylah & her life.  All things that I was so unsure about.

Today's encounter was a total surprise, but the anxiety that had been building since I scheduled this meeting has gone away and has been replaced with calmness.

Additional meetings will take place to continue preparing us for this journey,  but I'm happy that there is someone who will Walk With Me.

Tuesday, November 15, 2011

The Other Plan....

During our meeting with the fetal medicine specialists, Genetic Counselor & Social worker we were advised that because Mylah was diagnosed with having Trisomy 18, our information would be forwarded to a hospice program to assist in her transition.  The representative from the program Walk With Me contacted me last week wanting to set up a meeting.  Honestly, I really didn't want to meet with her, but my mom convinced me to  meet with them to see what was being offered to us. 
                          The appointment is set for this Thursday.

I don't think there is a proper way to prepare for this meeting. When I hear hospice, I think of the patient being a elderly person or individual with a terminal illness that they've been battling with for years.  I never thought it would apply to the precious baby girl that I'm carrying. 

The docs at the hospital are so certain of Mylah's demise. Their medical statistics and/or experience has led them to believe that babies with Trisomy 18 won't live very long if born alive. However, my research thus far has shown me that there are children LIVING with this diagnosis. Many have made it way past the first hours of being born.

While trying to "mentally" prepare for this visit & what will be discussed I thought of some feedback that I could provide.   There are programs & support groups for parents to help prepare for the loss of a child with Trisomy 18.  During our meeting we were given the book; A Time to Decide, A Time to Heal written by parents whose children had birth disorders such as Anencephaly, Trisomy 18, Down Syndrome etc. We were advised that there were funeral homes that would help with the memorial arrangements some free of cost. Cemetaries with a Babyland where Mylah could be buried. A suggestion of cute little teddy bears that would hold her cremated remains.  The hospital  has a program that would cremate her for free. We were even advised to join the parent grief/loss support group, but I haven't experienced a loss & I'm not grieving.

Over the last couple weeks I began thinking... What about the OTHER plan? The Life Plan?
I began to jot down questions & concerns that I had, which I'm sure plenty of other mothers before & after me have thought of.

So my question's are.....
What about the babies who survive? 
   What about the babies who go home with the parents? 
         What about the children who make it 6 months, 1 year, 5 years, 7 years? 
                          What services are offered to THOSE parents...  
My answers..... 
How about a list of pediatricians area who are willing to manage the care of a child with Trisomy 18? What about the cardiologists to examine the heart defects?
Where's the list of Trisomy 18 parent support groups? You know, the parents who are living with, caring for & loving a child with Trisomy 18.
Where are the social workers & home care nurses who help the family transition into home life with a Trisomy 18 baby?  What about THOSE parents? The ones who have been told their baby is going to die, but the child defies all odds & survives.

I've come to understand that the medical world usually prepares you for the worst case scenario. I think that they should practice a little more in preparing you for the worst outcome & the outcome nobody expected.

I have a feeling that Mylah is going to be the Trisomy baby nobody expected & it would be nice to have some help along the way.

Monday, November 14, 2011

To Shower or Not To Shower?????

That's my dilemma... Do I have my baby shower or not? Time is winding down for me to make my decision.  Each day my decision changes.  There are so many things that factor into my decision.  I never imagined that I'd be faced with making this decision. For years I've been planning my own baby shower. Yes! planning my own, it's my decision & I won't have it any other way.  In July when I found out I was pregnant, I went into party planning mode. Referencing the MANY bookmarks, pics, notepads that I had acquired over the years while planning other parties.  Those closest to me know that I love a party & I'd been waiting so long to celebrate becoming a mother.  I remember coming home after the confirmed Trisomy 18 confirmation & erasing the Baby Shower bookmark folder housed on the toolbar of my browser, it was just too painful.

Now, each day I find myself making a different decision on whether to have our shower or not.  I feel  if I don't then I'm just as cold as the physicians who told us "the baby's fate is sealed" &  she should be celebrated. Then I feel if I do & God decides to take Mylah after the shower then I'll be stuck with so many painful reminders; toys that she'll never play with, clothes she'll never wear, a stroller she'll never sit in & a crib she'll never sleep in.

One of my friends suggested having the shower after she arrives, but I know as a first time mother  & with Mylah's condition a shower will be the LAST thing on my mind. I'll only be concerned with spending every waking minute with her.
One of my thoughts was if we have the shower & God does call her home, then we would donate all the gifts to a charity in her name.  I hate feeling like this

I'm still unsure but I'll continue praying for guidance.

Wednesday, November 9, 2011

New Arrival....

Today we received a gift. A Fetal Doppler. A group of my friends at work gave us money to purchase a Fetal Doppler, so that we can listen to Mylah's heart whenever we want.  I'm so happy to receive this gift.  I've already listened to her heart & it gave me so much joy.

Been having some rough days lately. The tears never seem to stop flowing. I got out this weekend for a little retail therapy with my mom. It very hard trying to make myself enjoy something that I once loved to do, but of course my priorities have changed. 

It felt like at every turn there was a woman who was pregnant happily moving about through the mall.

While we were trying to get pregnant I would look at pregnant women or women with their children & wonder if she is a good mother, does her child feel loved, does she know how lucky she is.
Once I got pregnant, the questions changed; "I wonder what she's having?", " I wonder if she's excited", I wonder if I'll look like her the further I go into my pregnancy?". Now with the Trisomy 18 diagnosis the thoughts again have changed, I just find myself staring; staring at the bulging bellies of the mothers in the shoe department, with not a care in the world.  Staring at the mothers filling up their baskets in the children's department, preparing for the arrival of their newest baby. Wondering if I will ever have that happiness.

I had to force myself to buy Mylah some cute onesie's because I felt I had the right to, but felt guilty about the purchases later on.  Wondering if I was setting myself up for a heartbreak, will she ever get to wear them?  or will I have to make the painful trip to return them because she didn't make it.

It's very hard to stay strong & positive when the future is so uncertain. It's hard to put up a facade of happiness when deep inside the pain is so strong.  We've gotten so many cards & so many have reached out to us its amazing!   I find some solace in the many Youtube Videos & blogs from the parents of children who have Trisomy 18, 13, 21. I admire their strength & determination. Though most of the children in the videos & blogs have passed on to heaven, the time the parents shared with the children is priceless. I just hope I can be as strong as those parents have been.


Here is one of the videos that really made me smile & cry(tears of joy). It's inspiring & showing how these children have beaten the odds!


  

Sunday, November 6, 2011

Mylah's Story

1 Samuel 1:27 (NIV) "I prayed for this child, and the LORD has granted me what I asked of him"

I'm sharing this story so that it may help others going thru a rough time.  Please don't feel sorry for us because sorrows aren't what we need, we are rejoicing & praising God for giving us life.  We ask that you pray for us as we continue this journey.

Oct 27, 2011

"They Call Her Baby"

They call her baby
We call her Mylah, Mylah Roberta Perkins
I am her mother
Juwan is her father & she is our child.

Most of you know Juwan & I have been trying for a child for almost 2 years. It had been a time of up & down & very hard mentally & emotionally.
So you could understand the excitement & joy that we experienced once we found out that we would be expecting our first child in March 2012.
We prayed for a child & God blessed us with our hearts desire.
The pregnancy has been going great, better than I ever expected.


There has been a lot going on this last week regarding our unborn child.
Wednesday we had an appt to have an ultrasound to make sure our baby was developing as he/she should. We also hoped to find out the sex. Surprisingly during that visit the doctors found some things on the ultrasound that alarmed them. A heart defect & a cyst on my umbilical cord right at the baby’s stomach.  We were at the office for about 3 hours having ultrasound after ultrasound. This news was a total shock but we were praying for the best outcome.

The physician advised us that these 2 things found were consistent with possible birth defects that could mean a chromosome abnormality (such as Down Syndrome) and a amniocentesis was recommended. But how could the baby have a heart defect? The heart was beating so strongly & there was nothing seemingly wrong with the rhythm.

I’d been given the opportunity to have a amniocentesis done earlier in my pregnancy but declined because if something was found there would be nothing that the doctors could do to fix the problem, but now I needed to know what was going on with our child. The amniocentesis & a meeting with a genetic counselor were scheduled for Thursday & a fetal echocardiogram was scheduled for Monday morning to focus only on the baby’s heart.

There was a 3rd finding in the ultrasound that the physician advised us not to worry about because the baby was still young; clenched hands. Usually babies in the womb open & close their hands with movement, but our baby only held tight fists. After taking all of this in I became an emotional wreck, I had not prepared myself for this news, what parent would?

That night I spent a lot of time on the internet researching birth defects for babies with clenched fists. I came across something called Trisomy 18 or Edwards Syndrome. The information was very shocking & was something I prayed my child did not have. The children were deemed as incompatible with life with a slew of health problems. I read how most children were born stillborn & if they were born they didn’t live very long; some weeks, some hours. I read about how most mothers given this diagnosis decided to terminate the pregnancy.  Terminate the pregnancy? A late term abortion to kill my baby? I wasn’t sure if I could give birth to a child with all these problems and I thought I was firm in my beliefs regarding abortions.  I continued praying.

Thursday my mother & I arrived for the meeting with the genetic counselor who explained chromosomes & birth defects. I could only stare into space & wonder “How did I get here?” She assured me that chromosome abnormalities were not the fault of anyone and that Juwan & I did nothing wrong. She did say that we had a couple things working in our favor & one was the baby’s size. She said the baby was at a perfect size & was growing normally.

The amniocentesis was a painless procedure. Amniotic fluid was extracted from around the baby & would be sent to a lab for testing to check for any chromosome abnormalities. The results would be back Friday or Monday at the latest. I also had another ultrasound, during which the tech advised that our baby was a girl. The baby turned to the ultrasound screen & her hands seemed to motion thumbs up.  She would be called Mylah.

Friday, I did all I could not to be by the phone I kept myself as busy as possible, & the phone call from the hospital never came. I had feelings of both disappointment & relief. I could enjoy my weekend. I continued praying asking God for a miracle & to protect my unborn child and also to give me strength & provide direction for what was to come.

Saturday, we went along with our gender reveal party, which was something Wednesday I was against but my husband & father encouraged me to go on with my plans.  Everyone enjoyed themselves & it was revealed that Baby Perkins was a little girl.

Monday came & it was time for the echo-cardiogram. While waiting for this appointment I called the genetic counselor to make her aware that I would be at the hospital that morning in case she tried to reach me with the results of the amniocentesis.

The echo-cardiogram was a long procedure, basically an extra long ultrasound only focusing on the heart, on Mylah’s heart. There it was, that heart beating strongly & in rhythm, I thought what defect? I was told to go to the bathroom to see if Mylah would switch positions for better views. While in the restroom, I had a conversation with Mylah, I asked her to unclench her hands & to move around for mommy.
After the echocardiogram & other ultrasounds were done, the doctor hit us with another blow.  Mylah’s brain was not developing properly & there was something missing. My child, my poor daughter what was I to do.

The fetal medicine doctor wanted us to speak to the genetic counselor while we were there so they placed my mother, husband & I in a room. Then the phone call came and my worst fears were confirmed. The amniocentesis FISH test confirmed that Mylah did have Trisomy 18. A 1 in 5000 chance & it was my baby.  The genetic counselor scheduled a follow up visit with her & a fetal medicine physician the following day.

I don’t think I’ve felt so much pain in my life. The baby I’m carrying had been diagnosed with one of the more severe chromosome abnormalities that a baby could have. I spent the rest of the day crying & in pain. Nothing could comfort me. I kept asking why my baby? I would have been a good mother. I later resented those words, because she wasn’t dead & I was still her mother.

Tuesday, we met with the genetic counselor, a social worker & 2 Fetal Medicine specialists from the hospital. They explained the findings to my family & the options that we had with this diagnosis.
We could carry on with the pregnancy until Mylah delivered, but there was a possibility that Mylah would be born stillborn & that if she was born alive there was a chance that she may only survive for a short time. They explained that most babies with Trisomy 18 don’t live past the first year of life & that if they do there would be many problems with her.  If we decided to carry on with the pregnancy we would only be given prenatal care, there would be no fetal monitoring, no listening to the heart, no more ultrasounds to check on the baby even during labor because as it was said “the babies fate is already sealed”. I was hearing correctly, they were giving up on my child before she even got here. Up until that moment I hadn’t felt Mylah kick at all, just flutters. After the doctor uttered those words to my family, my baby kicked, a nice swift kick from the long legs which resembled her father that I had admired in the ultrasounds. She let me know she heard those words.

The other option was to terminate the pregnancy with one of two procedures. One being induced labor & giving birth to a child whose heart would be stopped before she entered the world.  The heart; that strong beating heart.

Right there I knew what I had to do the option of termination was a thought a few days ago. I prayed for guidance.  Browsing the internet over the weekend I came across many families whose babies had survived labor & delivery, many made it months, some made it years & are still living. Who was I go give up on my baby just because science said so?  We had prayed for her, we wanted her, we asked God for this baby. She is our baby.  She has a head, a brain, a body, 2 legs with feet & toes, 2 arms with hands & fingers, that heart, strong & beating & those clenched fists which confirmed Mylah was a fighter & as her mother I was going to fight the fight with her.
I advised the doctors that I didn’t care about heart defects, brain defects, clenched hands or flat feet. I saw a heart, a beating heart, one that GOD gave her. He gave her life and I was no one to take it from her. Terminating my pregnancy would be killing my child. The child I asked God for and I would carry her until God decides to take her from us.


This is going to be a long, emotional, journey. We are staying prayerful & trusting in GOD & his abilities. He has given us the best gift that parents could receive and that is the gift of life.   I won’t give up on my child like others have.  She is my child & I am her mother, Juwan is her father & she is a fighter and I will fight for her as long as I can.

I want to thank you for your support & encouraging words. Please keep my family in your prayers as we travel this journey to meet our daughter, Mylah Roberta Perkins.

Intro-

I've decided to start this blog because it seems like sharing OUR story has not only helped me to release some pain, but it may help others in their journey as well. I was led to start this blog by the numerous blogs out there of the families who have also been where we are.  I've admire all the families who have shared their stories. Their stories have given me so much strength and have inspired me in so many ways. 

Please feel free to leave a comment, quote, scripture, or poem if you feel necessary. 


As always I ask that you continue to pray for our family as we travel this journey!