Saturday, June 23, 2012

Save the Date....

Save the date cards are usually cards with the photos of a soon to be wed couple who is asking that you reserve the date noted to attend their upcoming wedding. Well my wedding has come & gone.  Juwan and I have been married 8 years and we recently became parents of a wonderful miracle named Mylah Roberta. 

Our "Save the Date" is Thursday, July 5, 2012. That is the date that Mylah will undergo her Pulmonary Artery Banding surgery at U of M C.S. Motts Children's Hospital in Ann Arbor, MI. 

Have you ever known something was coming; built up the anticipation, excitement/fear and then eventually calmed down knowing that it would have to happen but just not sure when. Then have reality smack you in the face once you had a DATE?

That's me currently. This whole process has been one long emotional roller-coaster. Full of ups & downs, twists & turns. Now I feel like we've come to that one part of the ride; that BIG HILL, the tallest & steepest part so far.  We're cranking up slowly towards the top, & as we get there I have to decide- either face this drop with your hands up in the air & eyes open, or eyes closed, holding on to the safety bar for dear life.

It's during this time that I must remain strong. I can't let the enemy creep into my mind and cast doubt on this situation. The decision has been made, we have a date and we must prepare to accompany our daughter to one of the most important events of her life thus far.

I was asked how did I picture my life with Mylah by one of the cardiologists & I have to remind myself of the visions that I have. She's going to get bigger, she's going to grow up to be a strong little girl. She will celebrate her 1st birthday-its a Candyland Themed party(yes I've already started planning) set for March 23, 2012 with a walk on March 24, 2012. She will attend preschool, & go on to kindergarten. She will love to shop-like her mom & grandma. She will be a little fashionista. I will teach her to play volleyball-her legs are long for a reason!  I have so much more that I envision for Mylah and during these next few weeks I know that those things will help me get through some of my toughest days.

I know that this part of the journey won't be easy, I wasn't expecting it to be. I have to be strong. Strong for her & strong for my husband. Together we will make it through. I just ask that you please continue to pray for us and most of all our little girl! 

My Bib is bigger than me! 

Sunday, June 17, 2012

Moving Forward....

with surgery for Mylah.  After much praying, fasting, advising, & thought we have decided on the Pulmonary Artery Band for Mylah's surgery. It was not an easy decision. I found myself wavering back & forth on how I wished to proceed with Mylah's surgical care.  In the end I'm praying for peace in the decision we've made. Although surgery for her is risky either way; Juwan & I felt that this surgical procedure was the best for Mylah.

It's so hard deciding on surgical intervention when she's been doing so well but we have to give her a chance. I don't think that GOD would have allowed Mylah to be here this long, thriving as she is, and not give us the decision to surgically intervene. He is continuing to use her to show people things they've never seen before. She is a strong little girl. She is showing me things I'VE never seen before.

I'm hopeful that everything will go fine. I'm just trying to accept the realization that this surgery is going to be very soon. In my mind I was hoping for at least a month before surgery, but according to her cardiologist it may be within the next 2 weeks.  When he said that my mind started racing! I had planned to have her christened in July and was planning on family photos sometime within the next few weeks. Although, we haven't been given an actual surgery date, I have to try & compress a month worth of plans into 2 weeks.  Talk about pulling your hair out.

I was watching Mylah sleep Saturday morning and I couldn't help but feel so THANKFUL for her and the time that we have together. She is one beautiful little girl. I love her more & more each day and honestly I didn't know I could love as much as I have until she came along. The love between a mother & daughter is different than the husband & wife love or the father & daughter love. It's indescribable.  I wouldn't change having her as a daughter for anything!

As these next few days come & go, I'll be cherishing my daughter and loving on her as much as I can.

I continue to ask that you pray for Juwan, Mylah & I and our extended family.  I'm not sure what THIS leg of the race is going to bring, but I'm preparing to buckle up for the ride.

Wednesday, June 13, 2012

Inspiration.....

what I'm hoping this video INSPIRES you to do....

LIVE each day with THANKS
LOVE everyone no matter how they are created
REFLECT on the BLESSINGS you've been given no matter the size
RESPECT the decisions people are faced with
REMEMBER to not judge someone based on appearance or disability

Kleenex would be good right about now....



Saturday, June 2, 2012

2nd Video

Please read "Things We Live For" before viewing this 2nd video...




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The Things We Live For....

those were the exact words that my best friend texted me when I told her that I heard & saw Mylah laugh today.  A moment that brought me sheer joy and also tears to my eyes. It was such an accomplishment for my baby and it caught my sister & I by surprise.   I usually stretch Mylah's limbs when we are playing together. I focus on her hands, fingers, legs, and arms; pulling & stretching each limb with ease. Last night while I was doing Mylah's equivalent  of yoga I heard what I thought was a giggle, but I hadn't been able to tell if she was giggling or fussing. 

Mylah had another cardiology appointment today. Juwan, my dad, & I made the 30 minute drive to the hospital.  Once again we went thinking we were going to make a decision but we asked for 2 more weeks after being flooded with complex medical jargon and a million "if then" scenarios as it relates to the 2 surgical options that were presented to us 2 weeks ago.  It's very frustrating because Mylah is doing so well given the cards she's been dealt. She's gaining weight, she's talking  a lot more, & moving more, that it makes a decision regarding surgery much more harder. I know we can't continue to wait but it's not an easy decision.

I can't ask another person "what would you do" because honestly they don't have the attachment to Mylah like Juwan and I do. They aren't her parents, they didn't carry her, they don't bond with her, they don't look into her eyes and see themselves so honestly the decision is all on us-Mylah's parents. 

We did a fast earlier this week. Our focus, to pray for Mylah and the decision that we are to make.  I didn't hear the Holy Spirit reveal GOD's plan to me so I was not prepared to make our decision known today which is why we asked for 2 more weeks.  The enemy is really working trying to attack various things in my life. He's tried to attack my marriage, my faith & belief in the abilities of GOD, and my mind; setting in depression, doubt, & worry.  He also attacked me during the fast, which I must admit was my first.  He got inside my mind & had me scared to pray outloud in front of others. He told me that my prayers didn't mean anything, that I didn't have "proper praying abilities" because I didn't know many bible verses and my prayer just wouldn't "sound right".  But I realized that this is not the case and that the LORD hears me call out to him & he knows my heart. He hears my sorrows, and he hears my pain.  He hears my triumph & the requests of my heart so I prayed out loud for the last prayer. 

During the appointment today, as the physician analyzed the outcomes of both surgeries & explained possible expectations if we opted to do nothing  he asked "how do you envision Mylah and her life?".  It wasn't a question that had been asked before.

Weeks ago, before the fast I asked GOD to send me a sign on the direction we should go. He sent me a few but most recently one that I will never forget. I was sleeping and woke up with the sudden urge to use the restroom. In our bedroom is a surge protector with a red light that illuminates when the power is on.  Most nights I awake to this light is shining up the wall. This particular night there was something different about the light.  There was a image that illuminated in the red light.  I sat up in my bed and I saw legs; the legs of a child.  There was no body, no face, no hands, just basically a torso. The legs appeared to belong to a child about 7-9 years old and the legs wore a pair of striped leggings. On the child's feet were some Mary Jane type shoes.  I was so surprised to see this image that it scared be back under my covers and obviously turned me towards the wall. After a few seconds I mustered up the courage to turn back around and there the legs were still standing.  I'm not sure how I eventually ended up going to use the restroom but I did.  I wasn't sure of what I saw and I surely thought I was imaging the whole thing. A few nights later the legs were back again.  It was during the 2nd occurrence that I realized that the legs I saw were Mylah's legs and that GOD was showing me that Mylah would be growing older; out of infancy into a toddler, then eventually a school aged girl.  I only shared my experience with a few other people because I thought I was seeing things, but I realized that I'm not only traveling a journey with Trisomy 18, I'm also traveling a spiritual journey as well as it's only fitting that I shared this story with my readers. 

I was really kind of down today since the appointment this morning. It's so much pressure that I hold on my shoulders and mixed with the gloomy weather my mood was really down.   Mylah was laying on my stomach face up and I thought I would just play with her while we watched TV with my sister.  I grabbed Mylah's arms and started to stretch them out wide then I pulled them above her head and I heard that "giggle" again.  My sister turned to her and as I stretched her arms upward again my sister's facial expression changed to show a smile so big I could see the joy on her face. Mylah was indeed smiling. I could tell from my sisters face that it was so unexpected and it shocked her. She began to shout saying that Mylah was laughing. Because Mylah wasn't facing me I couldn't see the expression she was making but my sisters face showed so much amazement that I needed to see what she was so excited about. She recorded Mylah on my phone. I immediately watched the video and began crying tears of joy.

I viewed my daughter with the biggest smile on her face and she giggled so sweetly.  I didn't see Trisomy 18, I saw a normal baby.  I've heard so many say that Trisomy children, don't make noises, they don't smile, they won't ever recognize the faces of their families. The video showed me that once again GOD has the last say.  He is still performing miracles and wants people to know that he is in charge.  We were so excited about what we saw we immediately got on Skype to show our parents the latest milestone in Mylah's life.

I prayed this week and thanked GOD for giving us Mylah. I thanked him for picking me to be her mother and allowing me to carry her.  I asked him to continue to use Mylah to bring the nonbeliever to his/her knees, to show the medical community that HE is a powerful, almighty GOD and that this journey will go according to HIS will and not our own.  This video is proof of that.

I hope it brings joy to your world as it has greatly blessed mine!

P.S. Excuse my stomach. Hey we were in the comfort of our home! LOL

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