No Dramatization

Since the beginning of our nonprofit, I’ve had several opportunities to share our story.  I’m sure that I will continue to share.  One particular part of our story that I’ve shared, is the reason why we are dedicated to promoting the importance of blood donation for those with sickle cell disease.  A blood donation helped to save our son’s life.

It doesn’t matter how many times I tell this story.

No matter how many times I tell that part of our story, it leaves an ache in my heart.  It gives me a sinking feeling in my stomach.  Whenever I share the details of that time frame when he spent days in the PICU, I return there.  I not only remember the fear, I feel it.  I don’t just remember the helplessness, I feel it.  I don’t just recall seeing the blood of a stranger slowly drip into my son’s lethargic body, I feel the nauseousness of that moment.  As I tell this part of our story, I shake as I shook then.  I cry as I cried then.

The tears are real. Every last one.

I cry as I am reminded of how I could have lost my son.  I cry because it’s still so hard for me to share such intimate moments with total strangers.  I cry because I’m grateful to God that I still have my son with me.  I cry because this moment can happen again at any time.  No matter how hard I try to keep him well, there are no guarantees.  I cry real tears because our story needs to be told, it needs to be heard, it needs to be felt.  I cry because there is no universal cure and my son still has sickle cell disease.

This is not a dramatization of a real story.  This is our life.

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No one knows your story like you do. Share it.

Why Are You Smiling?

Not too long ago, my son and I participated in a fundraiser for our local children’s hospital.  We arrived for our portion of the event a little early and proceeded to check in to let the organizers know that we were there.  I recalled greeting several people with a smile on our way to the check in table.    Later on when it was time to do our interview, we were introduced to the interviewee and he said, “I saw you earlier when you came in and you had this huge smile.  I had no idea that you were a mom of one of the miracle children we were going to interview.  Why are you smiling?”

I immediately processed the question.  I thought about how I was feeling at the time.  I thought about how well my son was feeling at the time.  We hadn’t had a hospital stay in a while and we were managing his illness very well.  I then proceeded to answer our interviewee, “God is good! Why not smile?”

Trust me, this journey is not all smiles and I’m human but when I think of all the goodness that God has granted us, I must smile.  It took me a while to get to this point.  The guilt, the constant worrying, the “woe is me”…..I had to learn to deal with it all.  It took time, prayer, sharing how I felt, listening to those who wanted to help me to get to this point of smiling.  When I catch myself sliding back into the gloom,  I check myself and my attitude, say “Thank you, Jesus” and I smile.

I smile because my God is good!

 

Proverbs 17:22 King James Version (KJV)

 A merry heart doeth good like a medicine: but a broken spirit drieth the bones.

Praise Break. Thank you, Mom!

For the record, my mom is a super mom.  She’s always helping others, especially the elderly and the children.  She’s the epitome of moms.  She does things that are huge to others but is just a “given” to her.

Case in point: We usually attend Church in the “country” (endearing term for my childhood home and neighborhood) and most Sundays, my mom cooks our dinner.  Well, once she learned of and understood Braden’s food allergies, she began preparing dishes that he could eat in addition to her regularly prepared dishes.  She didn’t ask if she could or should; she just did.  I love my mom for that and I don’t think she understands how appreciative I am.

Now the the main part of the “case in point” is, this past Sunday, we celebrated my dad’s 69th birthday.  Before Church, Braden and I stopped to get some cupcakes to celebrate dad’s day.  I reminded him: “You know you can’t have any, right?” He said, “Yes, I know.” So after Church, we went to our parent’s home and my dad began to open his gifts.  I noticed my mom made a chocolate on chocolate cake (Yummy, my favorite).  We sung happy birthday to dad and he blew out his candles.  It was time to cut and eat the cake.  I glanced at Braden and he was cool.  He was just excited to see my dad open his presents and blow out his candles.  Well, my mom – super mom, epitome of moms- brings out a small cake and said “Braden, I made a cake that you can eat!”  She baked a cake with no milk or eggs.  She did something extra that allowed Braden to be included in the celebration.  I almost lost it.  I was so full of emotion and was once again amazed by my moms unselfishness and her desire to make sure everyone in her family was happy.

This reminded me that despite all of the responsibilities and issues within my own life, I can be considerate of others.  I can make an honest effort to help others, whether through words or small acts of kindness.  You never really know how your actions could impact someone’s outlook on life.  You may motivate them to pay it forward.

Once again, thank you, mom.

The Right Decision. Is it?

We have to make a lot of decisions concerning Braden’s health.  Given he has other issues besides sickle cell disease, it’s kind of difficult, at times, to be sure we made the right one.  But what’s right?

Yesterday was a very stressful day.  Braden had to have a minor procedure, in relations to his Eosinophilic Esophagitis (EoE or EE) diagnosis, however it did require him to be sedated.  He’s had this procedure before and the meds used for sedation were the same.  A routine procedure that didn’t end so routine.  It brought back the paranoia of the rare side effects.   Immediately, I questioned our decision to even have the procedure.  Was it absolutely necessary? Can we just live with the symptoms and just work around them?  Do we really need to know what’s going on in the inside as long as his vitals are ok? Yep, all of those questions.

But guess what, I had this long, drawn out post to tell you how awful the experience was but I deleted it. Yep.  Once again, I looked at my son and upon him recovering from the “rare” effect of the sedation, he was good.  He had no recollection of what happened and actually didn’t really care to hear about it.  He was hungry and thirsty and a little disappointed that his throat was sore.  Later in the evening after a couple of doses of pain meds, he was back on his regular diet and relaxing with his iPad at home.

Not once did he complain about the procedure.  He had moved on.  Now, I did take notes and have written down my questions to ask his physician.  I am prepared to do what I need to do to stay on top of his health.  This requires me, us, to have a clear mind, to be able to regroup and adjust and keep it moving.

I’m thankful and so blessed.

I’m thankful for the prayers of my family and friends.  I’m thankful for the positive words and vibes.  I’m thankful for having someplace to take my son to get the medical care he needs.  I’m thankful for his hematologist and staff, who genuinely care for my son.  I’m thankful for not being alone on this journey.  I’m thankful that I can hug and kiss my son (even when he wipes away my kisses), because there are many parents who cannot.  We pray for them.  I’m thankful for God’s Grace and Mercy.

So did we make the right decision? Yes.  We made it based on what we believe is best for Braden, what’s best that will allow him to be able to smile, laugh, play and keep it moving.

Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct your path.

Proverbs 3:5-6

 

 

He Brings Me Joy

There is so much going on in our world today and if we allow it, it can become so overwhelming. As a parent, that task and responsibility alone is very challenging. Being a parent of a child with sickle cell disease or any chronic illness adds another level of difficulty. Whenever I get to a point where I just want to withdraw into my own little world, I look at my son and I see a living, walking example of strength and resilience.

If he hurts or is sick, we address it and he moves on. He doesn’t linger in misery. He never says, “Why me?” How can I not just immediately regroup and say “Thank you, Jesus. I’m truly blessed.”

My husband captured this picture of our son. He captured a moment of pure happiness. (My own personal meme) Every time I look at this picture, I’m immediately filled with joy. I know that our true joy is within and only we can allow others or our circumstances to block it. It’s our choice. Choose to be happy. Protect your joy. Claim it.

Behind The Scenes

Sometimes a visual is best.

Last year I decided to VLOG (blog where most postings are in video form) our story.  Unfortunately, I never posted the first video.  I wanted to share our story in video form but hesitated.  It wasn’t until I began this blog, that I understood how empowering it is sharing our story.

This past week Braden had his annual TCD (transcranial Doppler) test appointment in addition to his regularly scheduled hematologist appointment.  I created a video of that appointment just so you can see a little of what happens.  (I mentioned in the video that he sees Dr. Carla once per quarter but now its once every six months or more if needed). These appointments are just one way we manage his illness. Not many people know what happens at his hematologist appointments.  Take a moment to view our “BEHIND THE SCENES” at the link below:

Our Sickle Cell Warrior: Our Story  ♥

Thank you all for watching!

Mommy Senses or Paranoia?

Upon learning that Braden had sickle cell disease, I felt that I needed to learn as much as I could. With all the information that I attempted to learn in such a short time, at times, it was quite overwhelming.

I trust my “mother’s intuition” or my “mommy senses” (my term) and had experienced it with my daughter but not in such a challenging way as with Braden.

I knew his normal body temperature and other “normal” vitals.  Any fluctuation in temps caught my attention. Coughs, runny nose, sneezes….I paid attention to everything.  So much information to handle.  Was it paranoia to be so cautious or was I just being a concerned mom? I questioned myself quite often.  “It’s just a cold.”  “He will be fine.”  I heard these things from others, and I began to even second guess my “mommy senses” when I felt it was more.

Well, one day Braden began to cough but he was still active. He was a toddler.  His temperature was elevated but not a fever.  That “mommy voice” said to call his doctor.  I said no, he will be ok.  He continued to play and act somewhat normal but I knew the cough was still there and his temp was still slightly elevated.  “Call his pediatrician. Something isn’t right.” my inner voice would say.   I didn’t even sleep well, I had to listen to him breath and watch his chest move….up, down, up, down.  I noticed his breathing pattern had changed.  After a few days, I finally had to call his pediatrician and make an appointment.  I took him in, the nurse took his vitals…his temperature was slightly elevated still but he was a little more irritable.  His pediatrician came in, looked at him, listened to him breath and heard wheezing.  She also heard his cough and I remember her eyes widening.  It did sound different to me at that time.  Initial bloodwork came back and his WBC was extremely high.  She immediately said, he needs to go to the hospital.  She looked at me and realized from the notes from the nurse that it had been 3 1/2 days since his initial symptoms.  She came within inches of my face and with her eyes locked on mine and said, “You can’t wait with him.  You just can’t.  I’ve lost a patient with sickle cell before.  You just can’t wait.”  At our children’s hospital, Braden was diagnosed with pneumonia.  He was immediately admitted, treated and eventually sent home after about a week.

My message…trust your mommy voice, your maternal instincts, parental instincts, that inner voice…your mommy senses.  Don’t worry about people who may say you are overreacting or being paranoid.  Listening and acting on that mommy voice can save your child’s life and ignoring it could cost it.

What Can We Do?

Yes! ‘Tis another question I hear a lot.  Its actually quite heartwarming to know that people care and do want to help.  If you’ve read my previous posts, you may now know that I’m a work in progress when it comes to allowing people to help me. Again, its ok to allow others to help when you need it.

I will use this post to identify things that WE can do.  I’m always looking for ways to help or even give back to organizations or people who have helped us.  For example, during hospital stays we were able to see the kindness of others (outside of the wonderful doctors, nurses and other support staff at our local children’s hospital).  There are people/organizations that donate books, toys, stuffed animals, their time, etc. to make the hospital stays as comfortable as possible.  I’ve witnessed how these acts of kindness help my son.  The games and toys were distractions for him…..a distraction from the pain or the procedures being done to get him better.  This is just one of many examples of what we’ve experience first hand.

Pray.  Prayer changes things.  There is power in prayer. NO additional explanation necessary.

Donate Blood.  I didn’t realize how many blood transfusions occur on a weekly basis just in our local children’s hospital until our son was diagnosed.  Braden has needed blood before for a transfusion, and that was a very scary time, but there are many children and adults with sickle cell who need blood more frequently..  We were thankful that the blood our son needed was available.  My daughter and parents donate blood regularly as well as myself, in honor of Braden but knowing many others need it.  Its just a small amount of time out of your day and on Braden’s

pain chart, would more than likely be less than a 1.  (Yes, he’s given me pain numbers at .5 increments before.)  Just one pint of donated blood can help save several people’s lives.

So, halfway through this post I realize that this question will also be continued in future posts.  Donating blood is important and for anyone who’s reluctant, take a moment to research this and learn some facts: Facts About Donating Blood – Red Cross. Also, until my son needed blood, I didn’t know how important it is that we ALL donate.  Did you know “Genetically-similar blood is superior for people who need repeated blood transfusions, for conditions like sickle cell anemia.  Increasing African-American donations is vital because blood types O and B, the blood types of about 70 percent of African-Americans, are the blood types most in demand.” – American Red Cross.  Take a closer look: Importance of African-American Donations Of course once I discovered this need, the engineer in me wanted to know the whys & hows.  Through some Googling and discussions with Braden’s hematologist and pediatrician, I’ve realized there’s more to our blood than the letter type…..there are antigens, plasma, platelets, red blood cells, white blood cells…yes, it gets complicated but the simple fact is there is a need and we don’t have to know all of the science in order to give.

Perhaps, now you know how I feel about blood donation and its importance.  Consider donating in honor of Braden or in honor/memory of someone you love who has/had this disease.  I’m sure you can find an opportunity to donate by contacting your local American Red Cross – Donate Blood.

Donates in honor of their grandson.

Donates blood in honor of her little brother.

 

I don’t want to sound “preachy” but this is a part of our story….JS (just sharing)

In future posts answering the question, What can we do?, consider spreading awareness on social media (share the link to my blog), volunteering at your local hospital, support your local Sickle Cell organization, support your local foundations that provide or raise money for children/adults who have sickle cell disease, be kind and again PRAY.

The Source of Your Strength.

There are certain sayings or words that I hear quite often due to the fact that I have a child with a chronic illness. A few of those sayings are: “You’re so strong.”, “I don’t know if I could do what you do.”, “As a mom, I don’t know how you do it!”…. When I do hear any of these, I just think of the many times when I’m on the verge of tears and I’m constantly telling myself, “You got this” on repeat…..

Occasionally you always get the “God never gives you more than you can handle.”  Before my children, I pretty much just took this statement as is.  I never really gave it a lot of in depth thought. That definitely changed after Braden.

Sometimes, I feel far from strong.  There are times when I just need to hear “You got this” from others and not just my inner voice.

Guess what? I am blessed because just when I feel I’m at my weakest point, I will get a phone call, text or even a social media message from a loved one or a friend.  It’s always right on time. I regroup and move on.  My children need me.

I’ve never been very comfortable with reaching out for help in pretty much most aspects of my life.  I’m so used to being independent and in charge.  I expect myself to be the strong one, to always be the one to just “make it happen” or just take it and keep it moving.  To me, at times, showing weakness is the enemy.  I’m still learning that asking for help or needing help is not a sign of weakness.

But you know what else I’ve learned? That saying I mentioned “God doesn’t give you more than you can handle” does not mean He will make things easy or make the hard times go away.  It doesn’t mean he expects you to figure things out all on your own or that you can’t ask for help.  I have to have faith and trust that God will provide and show me a way out of whatever difficult, uncomfortable or scary situation I find myself in.  He will give us the tools we need to get through those times, to endure and encourage others.  Those tools can be family and friends; their encouraging words, their shoulders, their ears, their prayers…it could be through others who share their stories…it could be witnessing your child battling a disease that can be so cruel but yet he endures it (that is always motivating factor)……tough times will not break me…..God is good….He’s the source of my strength.

I Corinthians 10:13 KJV

There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.

It’s a Little Complicated.

So, yes my little guy has sickle cell disease.  We knew this within 3 months of  his birth.  The newborn screening is an essential tool that identifies certain conditions that aren’t otherwise apparent at birth.  Well, after a bite of a peanut butter cookie and after a lick of the spoon that his grandmother used to mix her cake batter, we found out that he had food allergies (at two separate events). Yes, food allergies.  Peanuts and Eggs (specifically raw eggs) caused him to have anaphylaxis reactions.  At both events, his lips, tongue and throat began to swell and he struggled to breath.  There was excessive coughing and he was very scared.  So were we.  Fortunately, a LOT of Benadryl was used to slow down and eventually stop the reaction.  We were lucky.  He made it.  I had know idea, at the time, that he could have easily died.

He regularly sees his allergist and an EpiPen is with him wherever he goes.  He also sees a gastroenterologist.  Why, you ask?  Well, he also has been diagnosed with Eosinophilic Esophagitis.  What is that?  In simple terms, its a condition that due to food allergies, his body reacts by increasing the amount of white blood cells inside of his esophagus building up a lining of the cells that cause inflammation.  It restricts his swallowing and he chokes on food.  We do not know exactly which food/protein is responsible for this but he is currently on an elimination diet and has been for the past 3 years.

Ok. We’ve learned to deal with that.  But hold on, it’s a little more complicated.

He has also been diagnosed with asthma. Yes, asthma.  As if it isn’t bad enough that his blood doesn’t carry the necessary amount of oxygen throughout his body at times, this condition just restricts the little oxygen that his body has to function.  Great. (sarcasm)

Ok.  We’ve learned to deal with that, as well.

I honestly believe that if I make sure he sees his doctors regularly, take his meds as prescribed, I make sure he drinks, eat and have enough physical activity and of course all along with prayer, we got this.  All of this.

There are symptoms of the EE that can sometime make it hard to discern if its sickle cell pain or EE pain.  This include stomach pain which can be a result of both.  It takes doctor conducted exams, x-rays or ultrasounds sometimes to determine the reason of the pain and then it could just be a “normal” stomach pain due to a “normal” reason (constipation, nervousness, etc.).  Of course we have to be sure any breathing difficulty is either associated with the asthma or it also could be a sickle cell issue.  He’s had Acute Chest Syndrome before which is basically a blockage in his lungs.  This is one of the main reasons of death in a sickle cell patient.

This is not a post to complain.  Let’s just say, this is just a post to set the scene so that you can get a better picture of what we have to deal with.  We give God the thanks for allowing us to always be ready to deal with the next challenge, for giving us the desire to learn as much as we can so that we can be good strong advocates for our son.  He deserves nothing less.

So yes, it’s a little complicated but with God, our family and our friends….we got this.