Monday, July 23, 2012

Encourage Yourself

My heart rejoices in the promise of a bright and fulfilling future for my children and my family.  My heart leaps at the goodness and love extended toward to us.  Internal struggles and sadness are overwritten with hope and faith.  Very little prepares you for the ups, downs and the unknown in this funny little thing called life.  Continue to hold on and despite how it feels and looks, make a decision to stand on God's word and his promises. Thank you Lord for health, life, sacrifice, love, laughter, provision and victory...focusing on the finish line of this race.

The race is not given to the swift nor the strong but he who endures until the end. (parapharased Ecclesiastes 9:11) 

Do not let your hearts be troubled. Trust in God; trust also in me. John 14:1





Wednesday, July 18, 2012

Mission of Love ~ Revealed

A little over a week ago, the hearts of many rose to an occasion coordinated by a dear friend for #TeamBolton.  Below is the excerpt from her posting and my original blog post about our Super Hero Big Brother Donor Gift.
*************************************************************I started this Chip In fundraiser for two very special children: 5yo Mireya and 7yo Jalen. Many of you know the story already. Mireya was diagnosed with Severe Aplastic Anemia and last year her Super Hero Big Bro Jalen (@ 6 years old!), who was discovered to be a perfect donor match, was her a bone marrow donor. However, the transplant needs a boost, so within the next two weeks Jalen will have to be a donor once again for his sister. He has extreme anxiety about the medical procedure but knows he has to do this to help his sister. Since he has given the gift of life to his sister, it seem only fitting that he get a gift too. (My goodness, this is SOOO deserving of a reward!) All he wants is an Ipad, which we, along with his parents, are hopeful will excite him enough to ease some of his anxiety. Mireya will also be able to use this gift during her many hours in the clinic. If your heart moves you to help please click on the link below. Any little bit helps and will be a blessing to the Bolton Family. Any additional funds raised will go towards the family's medical expenses.

In less than 8 hours we raised enough for an Ipad and a few weeks of copays.  As a family we decided the Ipad would be the better choice in the long run, but a very special family knew in his heart of hearts, Jalen wanted an Ipod Touch.  With a disclaimer that it be given 'from Mommy and Daddy', they purchased the Itouch for him. Words cannot convey how much of a blessing this is to and for us.  The greater gift is seeing how a community of people (many we don't know personally), can come together to make a difference in the lives of someone else.  Over the weekend, I joined my Co-ordinator Extraordinaire and crew at the Apple Store to purchase the goodies for the kids. It was so exciting.


Jalen had his first appointment this week and he's feeling good about his Super Donor status and the things we're putting in place to support him.  Jalen's treatment will begin next week (injections, labs and assessments) followed by his hospitalization.  Our Warrior Princess will be in clinic tomorrow for at least three hours to receive a blood transfusion.  We decided to present them with their gifts tonight, and you will see they were very excited and thankful.  My Co-ordinator Extraordinaire suggested it might be a good idea to get Makinley something small so she felt included.  My feelings were that Makinley would be fine.  She had a moment, but within minutes her natural reaction and tears were turned into smiles.  About 30 minutes into playing with his Ipod Touch, Jalen asked me to please tell the friends that got these things for he and his sisters, that 'i love them'.   

Little Occupied Hands

Thank you so much for your kindess and generosity!  This is a unforgettable blessing in our journey.

Sunday, July 15, 2012

Bittersweet Days

 We took the children 'to visit' my Dads grave site on the 4th of July.  Jalen and Mireya were young when my father died, but they have great memories of the time they spent with him.  I was several weeks pregnant with Makinley at the time he passed, but had the chance to share her impending arrival with him in this last days.  Of all our pregnancies this was the one we had no issues with.  I believe without doubt he watched over the developing life of his 5th granddaughter.  She would have given him a run for his heart and money.  Makinley is just the right amount of sugar with an ample dose of spice.  She's also a comedian just as he was. 

We arrived at the Veterans Cemetary and had to take a moment to get our bearings.  Sadly, they've added so many new sites, but Jalen went straight to his Papa's grave site. We had our moments of silence, prayers and tears.  As we made our way back to the van, Makinley had a break down because she didn't get to 'see' her Papa.  I was heartbroken because the terminology the children used was going to 'see' and she thought she was actually going to see him and did not understand why we were leaving and she had not done so.  It was sad listening to her sobbing and huffing in the backseat (you know that point where you've cried so hard that after a few huffs, you fall asleep)?  That's how it played out. It was a deeply moving day.  Throughout the week, there were varying times where they all had moments of tears and sadness in missing their Papa.  The Anniversary of his passing is just around the corner.

The day my father departed this life and the day my Mother was born are one and the same...yes bittersweet is the perfect description.  We celebrated my mother's birthday at Mama J's.  Mama J stopped by to share some birthday love.  The food was delicious and the time together was priceless.  We laughed and had a really good time.  I did my due diligence and wrecked shop with my knife and fork.  Between the chewing and laughing, our face muscles got the workout our bodies would need after eating all that delicious food.

It's often said that time heals all things...in actuality absence makes the heart grow fonder and it's a reminder of what is missing.  Time just creates 'space' from where you are now and where you were then. We rejoice in knowing to be absence from the body is to be present with the Lord.  I'm sure my Dad was smiling, as we did it like we always do....food, fun and laughter (without the dishes this time).  Happy Birthday Mom and We love and miss you so much Dad.

Saturday, July 14, 2012

Basketball and Bullies

Jalen's new favorite past time is basketball.  From early rise to late in the evening you can likely find Jalen outside shooting baskets or playing a game with friends.  During our last library visit, Jalen checked out several basketball books, so he could 'learn' more about the game, players, etc.  It's so funny to watch him running between the hoop and his books trying out some new drills or moves.

One of the things Jalen has been looking forward to this summer is going to Basketball Camp.  We hoped summer plans as a donor would not interfere with his week of camp.  Thankfully a delay with insurance approvals allowed him to attend without interruption. We've been working with Jalen on several aspects of his game.  It was really exciting to see him go in on the first day draining shots during the open shooting with confidence.  He had a great first day and was equally excited to go back.

The second day, Jalen came home to tell me that one of the campers was hitting him and giving him a hard time.  Jalen has a sweet spirit and a very even-keeled personality.  He's not confrontational, but he is quick to share with us when something has happened that has hurt or upset him.  I was not happy to hear that he'd been singled out by yet another bully.  He shared that he'd asked the little boy to stop and leave him alone, but he persisted.  I told Jalen he did the right thing in insisting the boy leave him alone and in coming home to tell us what happened.  I also expressed how I wanted him to handle this situation and the next step would be to talk to the Coach or the Camp Director.   Jalen also mentioned how they talked about 'respect' at camp and how he did not 'feel' respected by this little boy.  Whoa...yes we will address this in the morning.  I took a moment to send the Camp Director a quick message simply outlining what Jalen had shared.  I let him know Jalen would be speaking with him or the Coach about the situation and I would only get involved if needed.

The next morning Jalen did not want to go to camp.  He gave me excuses about how the outdoor drills made him sweat, which I was not buying.  Is this the same kid that wanted to play basketball outside when it was 102 degrees? *enter the Family Feud strike*...wrong answer son.  I explained to him that he was going to camp.   I reminded him of all the friends he'd made and told him not to allow one person to ruin that for him *as my Dad used to say...one monkey don't stop no show*.  He reluctantly got dressed and we went to camp. When we arrived Jalen asked the Camp Director if he could speak with him for a moment.  As the conversation unfolded, he inquired about who the camper was.  Jalen's face looked concerned as if he didn't want to get the boy in trouble or perhaps 'appear' as a tattle tale.  I shared with Jalen that he didn't have to go point the boy out to us, he could simply tell us what he was wearing and that seemed to make him feel better.  The offender was identified and I left very proud of my son for stepping up and addressing this issue himself.  Incidentally there had been a few other complaints about this particular boy and his 'doesn't play well with others' status.  The issues were discussed directly with the little boy and his family.  This was also used as a topic of conversation to the group reinforcing respect, teamwork and self-discipline.

On the flip side, I shared with my son that no one has the right to put their hands on him.  I also told him sometimes people mistake your kindness for weakness.  Jalen is a very compassionate, loving boy with a heart for others.  He gets it honestly, but I told him in some instances he 'might' have to show these kids what they are working with. Jalen is a self-described baller, ninja warrior, wrestler.  So you might just want to back up off and give that brother some space.  I don't condone violence, but I'm not going to sit around and have my son serve as anyone's punching bag.  There are times you have to protect yourself and put a end to the madness.  With that behind us, the remaining days of camp were a blast. 

As with any sport repetition is key.  Jalen has several things to continue working on, but this week of camp really helped to put some of the pieces together for him.  He's dribbling better, driving to the basket with authority, dropping shots all across the key. His game has definitely come up a notch. On the last day of camp he came to the car with his certificate in hand, expressing his desire to play on a team and to return in August for the second camp.  Our hope for the week was that Jalen would have fun, receive solid instruction and look forward to playing and getter better. It's evident to us those initiatives were achieved and being a part of this program was a success for him. 

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Tuesday, July 10, 2012

Give Me Strength

Over the course of this year I've received many messages, posts and texts about the measure of strength we've exhibited throughout this journey.  Ironically I wake up most days asking the Lord for strength because I don't 'feel' strong.  I have 'hope', and my faith tells me that God is going to see us through this.  It is not of my own will. Some days my will tells me to stay in bed, my will doesn't want to talk, my will struggles with how we are back at this place, but the will of God shows me despite how things appear or feel, we have healing and victory in him.

There are times I'm on edge and could crawl in a corner and cry as the hours go by.  My patience is worn thin and I'm angry because I look at a five year old little girl who's battling a diagnosis that wants to hold on for dear life and destroy hers. I look at how the life of everyone has been largely consumed or affected by rolling with the flow of isolation, hospital appointments and illness.  A lot of the time it doesn't feel like strength, it feels like barely holding on, but in the midst you find there is a greater strength inside to manage and cope.  You do what you have to do and more as needed.  I have a beautiful Warrior Princess that is fighting with grace. I have a valiant little guy who despite his fears will endure for his sister.  We are Mireya's advocates, overseers and caregivers. Yes we're Mommy and Daddy too (and advocate, overseer and caregiver fall under that umbrella), but there are a lot of twists and turns in managing and maximizing the medical care of someone you love.  For over 15 years, I watched my mother as this person in caring for my father, not realizing the fullness of the responsibility, nor the enormous toll it takes.

We've not really been good at asking anyone to do much for us.  It's not pride or beyond our place, we've just always handled what needs to be done by ourselves.  We're so grateful for the outpouring of love and support we've received from so many.  At times it has truly been emotionally overwhelming. I have said it several times throughout this year, I feel that every good thing I've ever done in my life is coming back to me.  It has always been my desire in life to serve, love and be a blessing to others. I believe God is showing his love for us through the hearts and love of people.

Over this last year, I've learned to be present and savor the moments I have with my husband and children.  I don't sweat the small stuff, because dealing with something of this magnitude will quickly help you put things in perspective. I take nothing for granted and when the weight of the situation feels like to much to bear, I fall on my knees and pray.  Prayer changes things. I don't know where I would be without Christ in my life. I don't know how people go through such life altering events without faith.  I truly would have lost my mind by now.  One of the hardest things is watching your child enduring it all and feeling like there is nothing you can do.  I look at my sweet girl and I would trade places with her in a heartbeat.  I continually ask for prayer because there's power in prayer and we are standing on the prayers, thoughts and love of so many.  I find my strength in knowing the day will come where I look back on this year of our lives and thank God for victory and healing for Mireya.

Many days my heart is heavy not only for my child, but for the children of the many families I've come to know and love.  God wired me that way.  It's hard for me to separate myself from the emotion I know is attached with each situation.  Continue to pray for our strength, but know there is nothing super special about #TeamBolton...if you were in the same situation, you would do all that is within your might to hold your head up and face the situation gaining knowledge, strength and power along the way.  There are dark moments, but we can't dwell in that space. It serves no great purpose. Don't get me wrong, there are many nights I've cried and it was so necessary and cleansing for my soul, I know our total happiness and joy will be returned to us.  I know God has something so incredibly great for Mireya and for us.  I also believe that in the midst of all this, he has been pleased that he could trust us to walk this out, as we've held on to his unchanging hand, with faith.  Everything within me knows this will turn out better than alright.  Our faith has increased and our spiritual muscles are growing.

Some days I laugh to keep from crying.  I try to take the higher road and recognize any measure of goodness I can find.  I've always been that type of person, choosing to see and find the good in most any situation.  This last year has allowed me to 'see' things from a grander perspective.  I have a greater appreciation for everthing and everyone in my life.  I do not understand everything, but I don't have to, God knows.  None of this took him by surprise, his word says he will complete this work and until that time, we just count it 'mostly' joy...yes I deviate from the 'all' because it's not 'all' joy, but we find joy in knowing who we serve and his desire for our lives and our family's life.  Never leaving us, never forsaking us and our faith is increased and many around us have made a choice to see and look at things differently.  I don't know any other way to be, but prayerful, hopeful and thankful.  In him I live, move and have my being.  My happiness and satisfaction is not tied up in Aplastic Anemia and all that it has brought into our lives since last year.  My happiness come from waking up everyday alive to face another day not knowing what the day will bring, but knowing whatever it is God is able and he gives me the strength and capacity to face it.

Thank you for your prayers, your messages and encouragement.  It lifts us up.  When we're feeling low, we look around and know it could be worse and we thank God for the 'better' days that are to come.  The battle is not yours, its the Lords and he's got it.  Don't give up, don't give in, because in the end, we win.  Love conquers all and the greatest love and sacrifice of all is God's love for us.  He knows our hearts, our hurts and how much we can bear.  He bore it all and desires for us to have total victory.  We're keeping our eye on the prize and trusting that it won't be long before we taking that victory lap.

Saturday, July 7, 2012

Mission of Love

I made a confession in a previous post that I would do what I could to get Jalen the Ipad he's been asking for. It's a big gift for a little boy, but the gift he is giving his sister is priceless. My dear friend wants to #makeithappen for Jalen. I've attached her message and the link to chipin, if you would like to be part of this mission of love. If your not a fan of online giving, submit a post or send me a quick message and I will put you in contact with Carrie.  Thank you so much and God Bless!

*************************************************************I started this Chip In fundraiser for two very special children: 5yo Mireya and 7yo Jalen. Many of you know the story already. Mireya was diagnosed with Severe Aplastic Anemia and last year her Super Hero Big Bro Jalen (@ 6 years old!), who was discovered to be a perfect donor match, was her a bone marrow donor. However, the transplant needs a boost, so within the next two weeks Jalen will have to be a donor once again for his sister. He has extreme anxiety about the medical procedure but knows he has to do this to help his sister. Since he has given the gift of life to his sister, it seem only fitting that he get a gift too. (My goodness, this is SOOO deserving of a reward!) All he wants is an Ipad, which we, along with his parents, are hopeful will excite him enough to ease some of his anxiety. Mireya will also be able to use this gift during her many hours in the clinic. If your heart moves you to help please click on the link below. Any little bit helps and will be a blessing to the Bolton Family. Any additional funds raised will go towards the family's medical expenses.~ carriey


Friday, July 6, 2012

July 6th

New Birthday Celebration - 1 year ago
Today marks the One Year Anniversary of Mireya's bone marrow transplant.  Her 'new' birthday medically speaking.  Celebrating this day is bittersweet as we are preparing to repeat the transplant process in a few weeks.  Despite it all, we are reminded of how great God is in allowing us to see 'this' day.  Whether it's as we planned or not, we have hope and have surpassed yet another rung on the ladder of overcoming this illness.

Our expected timeline for the transplant has been delayed a little as we await insurance approvals and the scheduling of procedures for Jalen and Mireya. Mireya's count are holding pretty well.  Her platelets are borderline for a transfusion and her hemoglobin is actually lower than expected, even though she received a transfusion last week.  For now we'll monitor her closely and hopefully be able to hold off until our appointment next week for transfusions.

Please say a special prayer for Mireya, she has become a bit resistant about going to clinic.   It took a lot to get her full cooperation this morning and she decided to let everyone near the corner of 11th and Marshall know all about her waning desire to be an active participant in the process.  I stood amongst the gasps and stares wanting to shed my own tears...instead I scooped her up, hugged her tight and let her howl at the sun, all while trying to beat the countdown to the "Do Not Walk' sign.  It's tough, but when the going get's tough, the tough get on their knees, pray and keep it moving.  We don't have time to dwell in sorrow.  It doesn't feel good, especially when there is nothing you can do as a parent to change the situation.  We continue to hold on with faith.  Regardless of what we see, and how it feels, God is working it out.  He blessed us with a son that is a perfect match for his sister and although timing and medicine have seemingly fallen through, God is with us every step of the way and we are working our way to victory.

Psalms 91:1-2  Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, "He is my refuge and my fortress, my God in whom I trust."