I’ve Moved to www.sicklecellmom.com

 Visit www.sicklecellmom.com. I hope you’ll join me there!!!

Dr. Carla Ainsworth

Dear Dr. Ainsworth,

I am writing to thank you SO very much for yesterday’s appointment. Your professionalism, compassion and understanding touched our hearts and made our day. We came to the appointment somewhat troubled and stressed. Yet, we left your office inspired and hopeful.

As we walked to the car my daughter said “I can’t take the smile off my face!” Do you understand how that made me feel? Of course you do! You are a mom yourself. Many nights I’ve held her in crisis and wiped her tears. To hear her laugh and see her smile is a gift. You gave me that gift yesterday.

As you spoke to US I recalled you were there for me during the heart breaking event of MY mom’s death. You helped me understand how important it was for me take care of myself through such difficult and painful times. You spoke to me with respect and compassion that gave me dignity, knowledge and strength. At the time, I could not find these on my own. Your professional recommendations and support helped me get back on the path. I will never forget this.

I also need to tell you how much it means to me that you don’t shut me out. I never feel ignored by you. You consider my observations with respect and an open mind. You appreciate the fact that I am actively supporting my daughter through our battle with Sickle Cell. You realize that we are in this together. 

Your willingness to constantly grow and learn is amazing. Instead of positioning yourself as a doctor who knows it all, you remain open to learning new things and trying out a new approach. As you learn, you impart your knowledge and discoveries into your practice and teach others. These are leadership qualities that shine in the darkest room.

There is much to be said for having a doctor who truly understands your needs; actually cares about your health concerns. One who is compassionate about your pain and problems.  One who genuinely cares enough about your LIFE to the end that they intentionally investigate the big picture; consider the contexual implications and appropriate the best plan. You do this for us and we cannot thank you encough.

Thank you, Dr. Carla Ainsworth!

Music

Music is so powerful. Kirk Franklin’s “Keep Your Head to the Sky!” is ringing on repeat in my head. That song is pushing me forward and giving me hope right now!

Music. My therapy of choice today. Just what the doctor ordered. It is the absolute best form of stress management I know. Don’t know what I’d do without it.

The likes of India Arie, Sade, Musiq Soulchild, Kirk Whalum and Darwin Hobbs have ushered me through some serious stuff. Who do you listen to? What makes you dance away your difficulties? Sing away your sorrow?

Surrounding yourself with inspiring, soul satisfying, hip moving music today just might change your outlook and brighten your day.

Listen to it… Dance to it… Blast it…

Music “Like a cool breeze on a summers day.” India Arie

HOLD ON TIGHT

HOLD ON TIGHT to EVERY PROMISE the Lord has ever made to you!

Understand and know beyond doubt that He is able to do exceeeeeeeding abundantly far above your expectations or imagination.

His timing is the key. As badly as we desire the manifestation of His promises our sovereign, perfect, true, powerful, strategic, intentional, destiny driven God refuses to move and respond prematurely.

While you wait for the revelation and manifestation of His promises demonstrate how much you trust him. This waiting window is a critical period of preparation you do not want to compromise or skip.

The earth and creation moan and groan for the fulfillment of his promises. Your vindication is sure. Believe that. Speak that. Know that.  Are you ready?

Present your body as a LIVING, believing, worshiping sacrifice and watch God show up in truth and power!

Hold on TIGHT to EVERY promise!

Relentless

The absolute last thing you want to do is mess with a mother’s child. There is a mother bear in every mom. Its as if there is a button inside of her that should NOT be pressed. To press that button is to ask for trouble and hell on your hands.

Relentless is how I feel. This disease has pressed my buttons far too long! I’m no longer ok with staying in my place while is takes over and has its way. I am— relentless.

Relentless to connect with others. I need to speak with other people who understand what I’m going through. Someone who understands how insensitive and void compassion the medical community can be at times. Someone who understand how my heart hurts when I see my daughter in excruciating pain that I can’t do anything about. When I can’t kiss it and make it all better— I am relentless.

Relentless to express myself. I need to let it all out! Blow a trumpet and sound an alarm. I don’t care who hears me. I don’t care who thinks I’m crazy. Somebody give me a trumpet or any kind of horn because— I am relentless.

Timing is everything. I cannot believe I’ve waited this long to come out of my secret place. Yet, as with being pregnant comes the right time for delivery so then it is my time to come out. Premature birth involves risks and can be fatal.

Perhaps it was time for this button needed to be pressed. You can’t stop me. You can’t block me. You can’t frighten or scare me because I am— relentless.

Have you ever felt relentlessly determined about something? Ever been intentionally and fiercely focused? Consumed with a sense of urgency? Desperate to accomplish a goal? Ready to make radical change? That is— relentless.

Don’t be afraid of it! Don’t believe the hype that you’re crazy or quit when people desert you and talk about you privately. Its not up to them to understand something you don’t fully get yet. There is something within you that needs to come forth for the world to experience, know and behold. Embrace— relentless.

As you begin to PUSH remember to breathe.  Let the passion of “relentless” release and deliver what destiny demands you birth. You will feel so much better!

God intentionally placed that button inside you. BE— relentless.

Dominique Friend

Dear Dominique,

God is up to big things! Our telephone conversation tonight was amazing, enouraging and inspirational! I thank God for your journey. Thank you for letting me cry with you as you helped me to understand my daughter’s pain. Please know that your pain will NOT be in vain. You are a good soldier my sister.

I’m SO humbled and blessed the Lord brought you into my life. Keep fighting the good fight of faith knowing there isn’t a weapon formed against you that will prosper. Your treasure is in your mouth. Boldly ask for what you need. The fruit therein exceeds the capacity of your expectation and wildest dreams. Beyond what you could hope, think or imagine is the plan God has for you.

Walk~March~Kick~Scream~Push~Love~and Shine in it!!!

Love,

Veronica

WOW

Someone is praying this prayer for me…

“God, will you please amaze and blow Veronica’s mind as often as possible?  Please show yourself to her strong by your favor through connections with people, resources and divine happenings. Perform miracles daily in her life is my prayer. Amen”

And you know what? He’s answering this prayer!  My response… Thank you God. Clearly make known to me the thoughts and plans that you have for me and I will walk in it. I will not allow intimidation, lack of support, misunderstanding and political territorial structures and systems stop me from fulfilling your will.  I give myself away… Amen

Have a sweet night.

I Hope You Dance!

When our kids transition from childhood to adulthood a number of issues come to play. As mom’s we must face the fact that there is a very thin line between helping or hurting. Being who you need to be in each moment is the key to a balanced and healthy transition.

Knowing when to speak up or shut up~step up or step back~move out or move in~hold em’ or fold em’ becomes your new dance!

Feeling out your steps and footing can be tricky. Especially when the song and your partner have both changed! Finding right flow and the perfect rhythm can be tough. It takes time, patience and a whole lot of practice. If you aren’t careful you can step on someone’s feet, stumble or even fall.

Be it your child who is trying to grow into independence or their doctor who is getting to know your child– we must gradually assume a new role.

Yes! They will always be your child~your heart~your baby! Yet, if we aren’t careful— helping them could be hurting you and your child. Embarrassing and unnecessary stuff happens when we get out of position.

I must admit, I’m having a tough time with this right now. There are issues of privacy, development, advocacy and support that can all stumble or crumble if I’m not careful. I’m trying to keep it together without falling apart. Trying to be supportive and understanding while engaging participation and requiring responsibility with the weight of this heavy challenge called Sickle Cell. This can be overwhelming and stressful at best.

Recognizing that I can’t shoulder all of this weight and responsibility anymore is a trip. Even more crazy is the fact that nobody is asking me to carry it all anymore!!

So I practice finding the right flow and rhythm of letting go, breathing, style stepping and being available to be who and what I need to be in and for that particular moment. I’m trying not to wed MY desired outcome for my child’s life. My idea of  what her life should look like or become may not mirror my child’s vision or desired direction. This is unbelievably complex when your bond has become so tight through many emergencies, crisis and hospitalizations. The bond between a mother and a child is already deep then when you add the intimate pull, fight and struggle for a healthy, happy, quality into the mix things become even more complex. Your desire to see a return on their investment of tears and pain is huge! 

Reality check: the song has changed and I have a new partner who is growing up and trying to take the lead.

When you get a choice to sit it out or dance– I hope you dance! The folks who get dressed up and come to the party to sit and watch all night never have as much fun.

Have an amazing day!

Sunday Best!

I reflect on the joy of my day at church with my FAME Church family yesterday. I hadn’t been there for weeks due to travel! I’m so grateful to belong to a loving and supportive church family that truly cares about me and my daughter. I’ve enjoyed visiting other churches but there is nothing quite like being home.

As I reflect on some of our most painful, challenging and difficult times with Sickle Cell and its complications I recognize they have been with me all the way. From my pastor to members alike they have covered me in earnest prayer, shown up at the hospital, babysat our dog, brought home cooked meals and more!

Yesterday my pastor looked me in my eyes and inquired intently about our present status with some medical challenges we face. It was as if he needed to relay how very serious he is about supporting and being there for us. He declared his belief and partnership with us for a miracle. He even alluded to Sickle Cell Anemia in his sermon. Proclaiming Sickle Cell Anemia was not too difficult for God to handle! I was powerfully inspired as he preached. The church family cheered him on in affirmation. as if they all wanted me to know they believe too!!!

This kind of love and support is priceless! I feel wind beneath my wings because of it. I am grateful!

Probably Not the Best Idea…

I’m excited to welcome a brand new day!

One thought I’ve had for a long time I feel is worthy of bringing to your attention has to do with your response to people who battle and struggle with a disease that can be fatal. It isn’t a good idea to tell the person, their family member (especially their mom!), or friends that you know someone who died from that disease!

I realize how important it is for you to relate and share your story but perhaps that experience isn’t best.

Find words that encourage, uplift and inspire! I love it when people tell me to hang in there! Don’t give up! God is with you! I support you! I’m proud of you! These are better ideas…