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

video 





 

Comments

  1. God is so awesome...

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  2. Praise God! He loves to show His awesome work especially when we're in a state of weakness, God's strength and power shines even greater because we know the miracles are of no help from us. I praise God that you're you're Mylah's mommy and through her life she's showing you how strong you are! Love you!

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  3. That precious smile and giggle are truly amazing! She is so beautiful and such a miracle from God. I think you are an amazing woman for all that you endure day to day. I have been reading your "story " since the day before you gave birth to Mylah.. I prayed that your daughter would be able to smile,laugh,drool,cry and even give her mama a hard time as a teen( hehe) and seeing this update with her gorgeous smile brings tears of joy to my eyes. You will make the right decision regarding her surgery, You have already made the right decision by giving her life and such a strong fight that I don't believe You can go wrong.:) God bless baby girl Mylah, keep smiling little one.

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