Celebrate Good Times - 24 month NEW anniversary!!

So as I write this, our miracle little warrior child is celebrating with his parents tonight. Today we have made it two years since our last hospital admission. We made hard choices to get here, but we made it. We don't get him out much. We don't take him out and even cancel therapy and doctor's appointments if it's below 50 degrees. We battle too many consequences to make it worth it. We must have had some extra prayer warriors working on our behalf when mommy got the flu and bronchitis, for Braden and daddy to miss the flu bug completely. WE MADE IT!!! For those new to our story, we really never went much more than 3 or 4 months in the past without an admission. Occasionally we would make 6 to 8 months without a visit. This two year anniversary is quite monumental.

I visited the hospital this week to bring some goodies and encouragement to another special needs momma who had to make some hard choices that included a feeding tube for her son, and a few other surgeries as well. It was AWESOME to walk by the residents and staff doing rounds, and not recognize a single soul! I was lucky to run into a few of our nurses from the PICU. I got some great big hugs and high-fives, and of course some sighs of relief that I was not there with Braden.

I often wonder about the meaning of our journey. One day I will ask God what it was all intended for, and I'll know our true purpose. But somedays I am blessed with little snippets of how our lives impact others.

Many people when they receive difficult news or a diagnosis can find it devastating, crushing, unbearable and completely overwhelming. They can find themselves drowning in a sea of information and uncertainty. I met one of these women several years ago when she came to our Bible study for moms of special needs children. At the time, we were studying Esther. By the end of the study, she was telling some of us how we had become the Esthers in her own life. At the time I'm not sure I really understood her full meaning.

In the hospital, as she introduced me to her son's nurse as "her Esther". She began to unfold the story of how overwhelmed and flooded with desperation she was when her son started receiving multiple diagnoses. She explained that in our Bible study, she just noticed how I seemed to handle much more complicated medical issues with my own child with a kind of grace, calm and peace that she was longing for. She said that is was simply my example of how I was living this life that encouraged her to make the decision to essentially pick herself up off the floor, and start handling her own life issues the same way.

She is living proof, like my own family, that it's not the circumstances that determine the life you live - it's how you handle and deal with those circumstances that determine the life you live. People are always watching, and I forget that. I'm grateful that God gives us these graces, because I certainly would never describe myself as calm or graceful... you know that's all the covering of Jesus!! Peaceful I'll take, because I rely on Him to get us through this difficult journey, and I feel like I have been given a peace about our life and the things we deal with. Negative things come at us constantly, it's the devil's way of trying to sneak in. Bad things in life never stop happening to us, but we can't let them drag us down. The same is true for everyone, it's simply LIFE. You just have to put your big girl panties on and deal with it. Every day. Every time. It's just going to keep coming anyway.

Choose positivity and hope my friends - life is so much sweeter. Thanks for keeping us all in your prayers, we so appreciate them!! Braden's birthday is next month... NINE!!!


(Pic of our little man - I found him like this one morning, legs crossed. What struck me as funny about this, is that his daddy used to wake up and sit in this position every morning until he would wake up.)

Kodi, Brad and Braden Wilson

Overdue update and a 22-month anniversary celebration

Lately I’ve been awestruck. The life that modern medicine has afforded us with Braden can be so overwhelming at times it takes my breath away. I recently find myself tucked away in his room – just watching his machine breathing for him. I see him sleeping more than 20 hours a day and I know that his body is tired and unable to handle normal functions. His machines seem to be doing more and more for him, and I marvel at how incredible this all is.

We are at home with our son, grateful for quiet time with him. Appreciative we are in our own home. Awestruck that his machines can keep his body going when he physically can’t, or his brain doesn’t tell the body to function automatically like ours does.

I barely want to take him out of his little bubble. We avoid sick people, in fact, I sometimes run away from them. We don’t get him out unless it is absolutely necessary… we cancelled therapy to avoid the germs this awful season, we don’t go out into the world so he can keep his temperature stable, and his secretions normal.

I don’t want to ever go back to the hospital. It’s a place where germs abound, and we see what evil can look like in this world. It’s a place where some children get better, and some never get to go back to their earthly home. It’s a place where we are always exhausted and low on sleep but high on emotions. I want to avoid all of that as long as possible. I want to avoid the inevitable, but I know we can’t escape it forever.

But for now, we will celebrate our 22 months of being hospital-free. We will celebrate the comfort and safety our home environment provides for Braden. I remain grateful to the men and women who helped qualify us for the help we desperately needed for Braden to get home nursing. I will continue to marvel while staring at the machines that help him live. I will thank God for every continued day we get to be with him. I will love him like I’ve never loved anyone else. And I will try not to complain when I’ve been up four weeks straight with him at night, because I still get to wipe off those chubby cheeks and run my fingers through that gorgeous curly hair for just a little while longer.

Birthday goodies and the SuperMOM weariness

So I wanted to take time to thank those of you who gave Braden Amazon gift certificates but weren't quite sure what that would get him. Well I've included pictures of Braden's room and his new, amazing light projector. He loves it. Totally loves it. Here you can see why he would love it too.



We also got him a traveling gel memory foam bed for our trip back home. One of the places we stay he won't have a bed, so we wanted to be sure he would be comfortable!! And we were finally able to get more beads/filler for his bean bag chair that he adores, and enough to refill his foot rest - since he has grown over 1.5 inches in the past year, his feet are really starting to hang off the edge and nearly touch the floor.

Well, we are really digging deep into a few things that require a lot of work right now - so just pray for us.
1. We are in the middle of our home study for adoption, nearly finished with most of the pre-req paperwork and have embarked on the toughest part (seriously, harder than finding a match) - FUNDRAISING. When God called us to adoption, and still having a Braden situation (and the medical bills and fundraising required to keep up with everything insurance doesn't cover - and Obamacare has left us with more supplies and medicines this year that will no longer be covered) - we didn't exactly have another account of $40 - $50K sitting around just waiting to be spent. Yes, that is how much a domestic adoption costs. There is a possibility we could luck out and get one of this opportunities to only have to spend around $15K, but we just don't know our journey yet. But adoption today is done with a higher attention to the emotional stability and security that are more healthy for the birth mom and adopted child, long term.
2. Mommy is about to become a home health agency. I have a ton of things to get set up and paperwork to complete but soon we will have complete control over hiring, firing, evaluations and pay raises for our Personal Care Attendant workers.It will bring more work for us, but nothing we can't handle, and honestly will give us better control over communication between worker and employer. Pray for us!!
3. Seasonal sickness and sleeplessness are upon us. Many in Baton Rouge have been sick over the past 4 - 6 weeks with sinus and allergy flares that have debilitated them. It's been no different in our house, but yet different in severity and length. We have not slept in over 6 weeks now. Braden - poor thing has had stuff pouring out of his face every night. And while you and I would have an autonomic reaction telling our body to cough or breathe to clear our airway - he doesn't have that - so we have to clear it for him. Every night. Several times a night. So we definitely have lots of newborn practice, LOL. But after 6 weeks, it takes a toll on the parent too - leaving us susceptible to infection too. So mommy got sick with the sinus infection business too, but hopefully after a visit to the ENT we are on the mend… and my Superwoman cape will once again be restored. But special needs parenting is not for the weak, you will become weary from time to time. It's hard to take care of ourselves when we are busy caring for others - but I'm learning. And trying. I guess I'm never too old to learn. Sometimes the lessons have to come many times before we take it in:-)

Occasionally I get to see a post like this and it's a great pick-me-up and reminder that even at my weakest… I CAN DO THIS!! :-) (All things in Christ who strengthens me!!!)
http://www.lovethatmax.com/2014/05/special-needs-moms-inspiration.html

Thanks for checking in on us!!
Kodi, Brad & Braden

EIGHT IS GREAT!!!! His WARRIOR DNA is winning!!!

Today we celebrate the birth of a true warrior, a fighting spirit and angel on earth - Braden.

Last March when we were in the hospital several doctors indicated to us that we needed to prepare ourselves, because his condition was declining and we were nearing "the end." (GULP). But God has other plans for our little miracle. God knows what his days are numbered - because medicine cannot fathom the powers of prayer and healing beyond their comprehension. But here we are, celebrating 8 beautiful years God has given us with our son.

Birthdays are always bittersweet - because it's cause for celebration, and at the same time pause for reflection as his time on earth we know will be running out. We might be one of the lucky ones who makes it into their teenage years, but our realistic expectations are different than that. No matter the time we get with him, another week, another year - IT WILL NEVER BE ENOUGH. His body has been working so hard for so long, eventually it will tire out and come to rest. BUT TODAY WE CELEBRATE!!

He's overcome so much. When he was about 2, before we were diagnosed with Leigh's - given his condition, the doctor's claimed even then he was a miracle. They said he shouldn't have been able to be conceived. He should have passed in utero. He should have been stillborn. And then there are those times in the hospital when he was very ill, that they just didn't think he would make it. And then the death sentence that is Leigh's Disease.

But my son is born of WARRIOR DNA. HIs grandmother Susan shouldn't have been born or made it past her complete blood transfusion as a newborn, and she's overcome multiple health scares and challenges that threatened her life. His aunt Shala has overcome multiple battles with cancer and other numerous scary health battles that threaten her life. And his mom - well, I may have had some health issues, but nothing life-threatening - those who know me would say I have an intimidating game face, that I am fiercely loyal, and that I will pick up my sword in their battles to fight with them and protect them. And so we will celebrate our WARRIOR DNA!!

Next weekend we will celebrate his birthday (belated) with a Ninja WARRIOR party! It is the spirit of my son that we will celebrate even though his body will only allow him to watch from the sidelines. I've posted some pictures below, just a quick snapshot of his journey and ours - thanks for all your support and prayers, because we could not do this alone. Thanks for checking in on us and loving us from near and far.

From our days in the NICU


First set of pics at 2months old


18 months


Age TWO



Age THREE epilepsy walk birthday party and Easter


AGE FOUR - epilepsy walk birthday party


AGE FIVE


AGE SIX - at his splash party


AGE SEVEN - from the glow party


Eight year birthday party pictures to be posted in MAY:-)

365 Reasons to Celebrate

Today marks an anniversary we have never been able to celebrate before... 365 days without a hospital visit!! We came close a few times, but we have made it... FINALLY!


In case you are wondering why this is such a big deal, I'll remind you that he will be 8 years old next month. 8 years and had never gone a full year without an admit to the hospital. And I'll also jog your memory... that 4 or more doctors at that time were telling us our warrior was in a state of decline. It's one thing for one doctor to remind you of your official diagnosis and that your son is terminal, but it's quite another to have SEVERAL tell you that your son is nearing the end. See that post here: http://baby-braden.blogspot.com/2013/05/yes-he-is-warrior-7-years-strong.html

But nobody puts my baby in a corner. God has had another plan. My child is a warrior, and he is determined to write his own story in the medical journals. We do have days where we wonder if his time is coming, you can't live like we do every day and not have those thoughts handily waiting in the dark corners of your mind, just lurking around the corner waiting for an opportunity to pop out at you. If you need perspective on what a typical day can look like for us, you can see our daily battle here: http://baby-braden.blogspot.com/2013/03/a-day-in-our-life.html

So after 365 days of continuous relative health and freedom, I feel like dancing. I feel like I've had moments today I could have leaped off bridge or jumped over a train my adrenaline has kicked in so much in my excitement. I just want to shout it from the mountain tops.

We had to make tough decisions this past year to get here. No trip home to KS/MO for the holidays, keeping him out of daycare and in his home environment, and reducing his therapy schedule. Each of these was a difficult decision, but one that has paid off in dividends for our little man. We get the pleasure of enjoying him for a little longer, loving this little angel for just a little more, running my hands through his curly hair a few more hundred times, getting him to sing to me a few hundred times more. And we don't take a day of it for granted. You see, keeping him home has had it's own pay-offs too. Now that we are mostly staffed each day of the week, and several evenings a week - Braden will sing to me in less than 30 seconds now, and it used to take him a few minutes to warm up to me before he would sing. Now, he knows in a few short moments that I am not there to "mess with him", bathe him, change his clothes, do oral care, handle breathing treatments and cough assist - I am just there to be his mom and to love on him... AND I THINK HE KNOWS IT!!! One of his nurses lamented the other day that Braden wasn't singing to her that day, but as soon as I came in and started loving on him he started "talking" away... and she was jealous.

You know our perspective is a bit different than most of the planet. Most people think about what they WANT to accomplish in 365 days. I'll proudly wear the badge of my son who DIDN'T accomplish something. I'm glad we don't know any of the current ER staff at OLOL Children's Hospital, with the exception of a few. In this case, we are HAPPY to be unknown.

I am so proud to be the momma of this warrior. This year we will celebrate his 8th (gasp) birthday with a NINJA WARRIOR party. He is my hero, he continues to show his worth in this battle of life and we will cherish the moments we continue to be blessed with.
Judges 6:12 "The Lord is with you, mighty warrior".

Thanks for checking in on us. We love your support, your kind words and your continued prayers. They are all invaluable to us!!
You can view his facebook page for the most current updates here: https://www.facebook.com/pages/Beelieve-in-Braden
-The Wilson family

Not your typical New Year's celebration

As you may know by now, nothing is ever "TYPICAL" at our house, not even New Year's.

This year, since we are not traveling at the holidays we have the luxury of having access to our caregivers during the holidays. So when we got invited to a New Year's party, even though we knew we likely couldn't stay until midnight, we got our nurse Erica to agree to stay until 10pm so we could enjoy a little bit of New Year's revelry with friends. We had a good time with friends old and new, but soon had to hit the road by 9:30 to get home in time to relieve the nurse who had church plans:-)

Just when we were starting to feel some regular kind of people "normal"... we came home to Braden, of course - who maybe had a different plan. The nurse said his g-tube feeding button was loose, so we decided to change it before going to bed, so we wouldn't have to do it at 6am the next morning. We waited until after midnight, to ensure his stomach was as empty as it could be, before making the swap.

With this new button of his, while it has many perks of being low-profile and extremely durable unlike our old Mickey buttons, the challenge with this one is that the removal process is not as easy. The underside is less flexible, and can make it a little more traumatic at the site to remove and replace. As a parent, you know how hard it is to watch your child go through pain, but knowing you are the one or reason for the pain being inflicted, it's really quite emotional for me. I get nervous, impatient, hot, nauseous and sickly, and I'm not even the one doing it or on the receiving end! I feel like I never really "get it together" with these. So daddy patiently took his time exchanging the button, meanwhile I exacerbated the issue by applying the lube to the new button too soon, causing it to begin disintegrating (like it's supposed to once you place it), but that also meant it was opening before it was inside Braden - really? Let's just make this stressful situation even worse!! I swear I almost lost it, but as usual daddy kept his cool and told me to chill out. In the next 2 minutes he had the old one out and the new one in...

Mommy does the "nursing" afterwards: clean up of the site, application of antibiotic ointment and gauze, administration of pain meds, and loving on him and rubbing his head and turning on his Oliver glow seahorse.

After all that, we were too amped up to go to sleep, so we watched more of the Living Dead marathon that was on. And eventually we settled in and got to sleep sometime before 2am.

Evidently, we were extremely exhausted from the overly emotional events of the evening, because mommy slept through 2 alarms that morning, and our house did not get up until 9am. We adjusted Braden's schedule for the day, and just enjoyed a day together as a family and stealing extra snuggle time with our guy.

I feel like we've just come out of an entire season of THANKSGIVING that began in October and may never end... we are just so grateful for our loving God who continues to bless us with more days to love on our little warrior. God has been faithful to us by bringing a job to mommy that's really all the exciting pieces of her last career, only without the incredible stresses that come with trying to increase newspaper revenues in a world that's gone digital. Even with all the changes going on, we are hoping for more changes for our family in 2014. We have been exploring the possibility of adoption, and feel we are called to move forward with this in 2014. Please realize, this is not a quick process in any sense, and we have many more decisions to make before we really go down this road... but we would appreciate your prayers as we try to discern the path God has meant for us, as we begin our journey to bring a new baby home to join our family. This too will be emotional and incredibly expensive, which means more fundraising, only this time for family expansion, not just to meet the medical needs Braden has outside of insurance coverage.

So as God would have it, just as I was starting to stress out about Braden's dwindling funds in his medical fund, and adding the pressure of fundraising for our adoption journey... a kind-hearted friend of the family contacted me out of the blue to see if he could do a fundraiser for Braden. THANK YOU JESUS and THANK YOU RYAN O'NEILL for being our angel right when we needed one! We cannot wait to see what you pull together and we look forward to supporting you from miles away by letting all of Braden's support team know about your fundraiser! My sweet friend Michelle Gros gave me a necklace for Christmas that sums up what I needed to grasp: "The Lord will fight for you; You need only to be still" - Exodus 14:14 (by the way, her family is selling these as a fundraiser as THEY are adopting this year too!! You can see all the options in their Etsy shop here: http://www.etsy.com/shop/OurOneAdopt?section_id=14352490)

We had to put hard laminate commercial flooring in his room to replace the carpet we just had cleaned 8 months ago. As the highest trafficked room in the house, many adult hours spent in the room with him, it was just necessary. It's actually been quite nice, as it makes moving his cart easier to move so we can get in the chair and snuggle with him!! Here are pics of mommy and Braden on Christmas Eve, and with Daddy New Year's Day.



So as we move into 2014 and you think about all the things you wish to accomplish, I sincerely hope you take the time to be thankful for all that God has provided and brought you through in 2013. We are prioritizing FAMILY in 2014. If this is also a goal of yours, but you are not sure if the things you are doing are making them a priority, I found myself asking a simple question to keep me focused... "Is what I am doing today making a difference on the things I want written on my tombstone?" The sentiments people share after I'm gone, most likely won't be "was a loyal employee, hard worker and always put in more hours than required, was a pretty good volleyball player"... I'd like to focus my time on the things I hope are there: Loyal Friend, Loving Wife, Doting Mother, A Heart to serve others, a faithful servant of the Lord. That's really all the direction any of us need in life, but it's our choice to live it instead of just hope at the end of our days our family shows us more grace than we deserve. I want to earn it while I'm still here.

So with that, from our family to yours, I hope you have an amazing 2014 - so go do something about it! Make a difference, be the change you want to see in the world and carpe diem!

Saying Good-bye does not get easier

Living the life of a special needs parent who is active in networking with other families, and making this difficult journey with them... comes with some pitfalls. The heaviest is losing other special angels and attending their funerals. I hate that I have a "funeral dress" now. I rarely wear it for any other occasion now. And that is just plain sad in so many ways.

Today we said good-bye to one of our special friends, Millicent "Millie" Bradley. We met the Bradley family when they were hospitalized just after Gustav the same time we were, and Millie got her trach the same time we did... so we have called them trach twins since that time. The Bradley family was already blessed with additional healthy children, and so this fragile baby that was given to them was a new journey they weren't ready for. So I share with them a copy of the Emily Pearl Kingsley poem "Welcome to Holland", and with my usual artistic flair, made it "pretty" with some pictures of tulips and windmills. Turns out, they liked it so much they had it framed, and gave us our own framed copy of it too.

I wondered if I have been there "enough" for the family... somehow I've made it my duty to ensure families facing this loss know they are loved, have a chance to make lasting memories and keepsakes, and help them find a peace. Really, I know that only God can give them all those things, but if he can use me as his hands and feet - there I will follow and remain submitted. I try to be the "strong one" for these families, but I wasn't prepared to be so emotionally hit today before I even walked into the viewing. I was so touched to see that the birthday gift we sent Millicent for her LIFE CELEBRATION was on display. I sent a kit for them to make a garden stone to capture Millie's handprint and footprint, a treasured keepsake. It knocked the breath out of me and overwhelmed my soul to see this affirmation that indeed it would be a treasured. Thank you Jesus for letting me be your vessel.


Today as I watched the people pour into the funeral home, pour into the church, and make the pilgrimage to the cemetery... I was taken aback at how many people were touched by this sweet little girl, who was always smiling, but never once uttered a word.

Read that again, and let the words sink in: Millicent never uttered a word in her whole life.

A child who never was able to breathe a word, could light up the room with her beautiful smile, with such exuberance that others longed to know her and be near her. So many people took the time to say good-bye to this child who had made an impact on their life. That has to be GOD's will... for the simple SPIRIT of a child to touch people's lives. WOW! The power of God just blows me away!!


My only hope is that Braden too will touch many people in ways that make them better people. I know he has made ME a better person, a better friend, and give me a more compassionate heart for the trials others face. But as the parent of a child who never attended school, never made friends on the playground and cannot fully express himself, I wonder about the impact he may have on others.

While I hate to say good-bye to another special angel... my heart is full of the promise that Millicent is now fully restored, dancing and singing in the streets of heaven - watching over us, and waiting for us to join her. I know her parents, like we do, must long for the day to hear their beautiful child be able to express in words and action how much she loves them. This promise is one that keeps me going on the tough days.

Despite all odds, Braden is STILL doing NEW things!!

Those who have followed our journey, know that I don't take something as "fact" for Braden when it comes to doing something that requires cognative ability... until it's been witnessed more than 3 times. Then I can rule out coincidence, because he is proving he can do it more than by happenstance or accident.

Braden has had sensory issues from the get-go... he never really wanted to be moved or "messed with" - which includes things like being moved from one place to another, especially not fond of therapy, will to this day "FAKE" cry/whine when we change his shirt (although, now he stretches and bends over to one side while he's doing that), and he never has liked to have his diaper changed - he would rather be wet & dirty than clean & dry if it meant he would be "messed with".

Over the past year or so... I noticed him putting up less of a fuss or fight about changing him - which makes things easier, let me tell ya'!! In the past few years, he started making more "conversational" noise that we call talking or humming - he makes these sounds when he is having a conversation with someone, is happy, is getting his hair washed (also something he used to throw a huge fit about that now he loves), even getting oral care and of course, snuggling with mommy or daddy. He only makes these noises when he wants attention or expresses discomfort -so naturally, we always oblige and immediately pay attention to what is going on. His interactions are rare throughout the day - so it's easy to know when he wants to play or tell you something.

Well over the past month or so, he started "chatting" or making his little noises when he would want to be changed!!! A NEW SKILL!!!! I know this may sound so silly or uneventful to some parents - but a child who cannot talk who figures out a way to communicate something is a HUGE MILESTONE!!! I feel like throwing a party to celebrate. I'm so proud because I know how hard he must have worked to figure that out - IT TOOK HIM SEVEN YEARS TO DO IT!!! Praise God for every little milestone and accomplishment - especially during a season of life where the medical staff says he should be digressing. Don't get me wrong - he is when it comes to organ function... but for him to make a new milestone in the middle of digression, makes this accomplishment all the sweeter!!

I thank God for sharing his little angel with us, he brings us so much joy, and I know he does to others who know him. It's such an honor to take care of this precious little soul.

Recently, we were asked to present the offering prayer at church - and we got to share our testimony of God's love amidst trials, and our responsibility to remain faithful in giving His kingdom our time, talent & treasure. It was such an honor to be asked, and we were so grateful God used us as his mouthpiece to reach people, as a few members we didn't know came up to us after church to thank us for our testimony. Since most of you don't go to our church, I thought I'd share it here, in hopes that it may bless someone else dealing with difficult times:

Thanks to our wonderful team of Pastors & leaders who tirelessly work to make a big church feel like my small-town church. And thanks to Pastors Mike & Rachel for stewarding an atmosphere where people can be themselves - a place that makes members yearn to strengthen their spiritual walk.

(Paul’s 2nd letter to the Corinthians) 2 Corinthians 9: 6-8 Generosity Encouraged

6 Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. 7 Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver. (CROWD TO SAY: Cheerful giver)8 And God is able to bless you abundantly (CROWD TO SAY with enthusiasm & claim it! ABUNDANTLY), so that in all things at all times, having all that you need, you will abound in every good work.

Brad & I raise a terminally ill & medically fragile child. When the medical bills were piling up, we got very nervous about being “generous” in our giving. But when we remained faithful in surrender to His will, God showed up. He orchestrated an entire fundraiser that met ALL of our needs that first year. When we did not lose faith and ask “HOW?”, but instead remained faithful in our trust in Him… He showed up with grace – He provided all that we needed. We are a testimony that even during times of trials, we must remain faithful in our giving – of our TIME, TALENT & TREASURE. We trusted Him with our giving, and he blessed us abundantly!!

Church – it’s because of YOUR generous giving of your TIME, TALENT & TREASURE that we stand before you on this stage today. The special needs outreach you have done with Christmas and Easter – brought our family to this place we love. You poured out love on our son in a wheelchair – and it demonstrated to us that the members of this church are not OF this world, because that is not how society responds to us always. You shared the love of Christ with our son, and you gained a family that wants to get closer to God. YOU answered the call to be cheerful givers, and look at what you multiplied.

Generous giving may not come naturally to you, especially if you feel like your trials are bigger than your God. But even in those times, and in times of peace – you can develop a cheerful heart of giving. Don’t be reluctant in giving of your TIME, TALENT or TREASURE… I challenge & encourage you to instill a daily discipline that will help you become a cheerful giver. Give a smile, give a hug, give encouragement, give a wave, give a caregiver a meal, give a person on the street-corner a granola bar, give someone who needs uplifting a personal prayer… once a week choose someone in your life to bless, and just DO IT!

Soon enough God will see your heart for the cheerful giver you have become, and He will bless you abundantly too.

Brad's prayer:
Father we love you and we thank you for the opportunity we have to come to this house and experience your presence. Father God we ask for your blessing tonight for all those that cheerfully give of their time, talents and treasure to advance your kingdom. Bless all that is received tonight and may you pour out your blessings in astonishing ways so that we are ready for anything and everything.

In your holy name we pray (and all gods people said)....Amen

FRIENDS - FAMILY -
thanks for keeping up with us on our journey. Your support & love means everything to us and gives us the strength & encouragement we need to keep going even during our trials. Thanks for blessing us with everything you do for us!!

Mother's Day Blessings

Well mother’s day has come and gone now, but it certainly left me reflective. This year has been a tough one on me, personally. My job has hit some very tough lows and I’ve taken some blows. And then I’ve taken some heavy blows emotionally this year. I’m not ready to share ALL of it yet… but just since January losing our close friend Baby Lawson, a few days later a mito angel Allie Stallion, and then a month ago little man Eli – another mitochondrial child in our home state of KS. There’s so much grief I am experiencing for these children who are not my own. My heart aches for these mother’s who will never get to hold their babies again in their arms. And our life can be hard, keeping up with all his medical challenges, finding consistent care to support the nursing staff, battling the insurance company is a constant – yet somehow I feel like I am the lucky one.

The best gift I received this Mother’s Day, was a realization of who I am now since because I am a mother. (But I do love the necklace and bath goodies, honey!) My son has made ME more of the person I want to be. A wise friend once pointed out how self-important some of us could be without our special needs children. I’ve accomplished a lot in life, met a lot of celebrities, been to some incredible places – and without Braden I’d probably be pretty impressed with myself. Gross. Yes that’s my past, but it’s not who I am, and it’s not WHO I want to be. Braden has given me the gift of learning to be humble. For nothing have I accomplished without God. Everything I have done and everything I accomplish is by the grace and will of God. These are His accomplishments, not my own.

I thank God for allowing me to be a better human being, a better friend, a better family member, a better wife – all because of the opportunity and blessing to be Braden’s mother. Though at times I may still find it a struggle, I’ve learned patience. And that God’s plan is perfect, and he makes everything good in His time. (Jer 29:11) A broken childhood and difficult circumstances in love has made it hard to find trust – but the more I trust God’s plan for me, the easier it is for me to trust others. When you come through seasons of life that leave you feeling so out of control, you grasp for that control in any way you can get it. God broke me of that need for control when he sent me Braden too. No longer do I have my day planned out in 15 minute increments (my family remembers my crazy full planner in college!) – rather I have lists that are merely “suggested to do’s”. My tiny human is in charge of my schedule now. Probably with the big guy at the helm.

So this Mother’s Day I did want to celebrate the new me – the new person I have become since raising this precious soul. My little angel has given me the gift of perspective in everyday life. He has taught me to be a better human being. Thank you, Braden, for choosing me to be your mommy. I BEE-LIEVE that one day you will be restored and be able to say the words “I love you” and that you will finally get to wrap your little arms around me for that embrace that every parent longs for. Until that day, I will keep doting on you, running my fingers through your hair and covering you with kisses daily – I hope you know how proud I am to be your mommy and how much you are loved.

Happy Mother’s Day.

Yes, HE IS A WARRIOR - 7 years strong

As the months inched closer to us celebrating Braden's birthday, I was confronted with all sorts of emotions, reflections and feelings. Add in that in recent hospital stays, an entire handful of doctors were sure to remind us that Braden is in a state of decline. My immediate defense in my head, reminds me that my son has overcome this death sentence he has been given MANY times, and that only GOD knows how many days we will be blessed with. As I see my son battle with things, refusing to let any human being put a number on his days, I am inspired by his spirit. I stand alongside him, fighting for him too. Not only did it become clear to me that my son is a true WARRIOR, that we, his parents are also warriors at his side.

I had been wanting to get a bumblebee tattoo in honor of my son for about 5 years, but nothing I found was "right". Then, a few months ago I did a search again - and there it was... the perfect little cartoon bumblebee with cheeks that remind me of my son, the cartoon eyes not exactly symmetrical - but for my little bee, something was missing. I wanted to honor him, to honor his fight, and so I researched the chinese symbol for warrior, and decided this would be the "stripes" on the bee. And I loved how my sister's bee tattoo for Braden, the body of the bee was his thumbprint. I too wanted such personalization - and decided the detail in the wings of the bee was the perfect place to put them. One wing was a thumbprint, the other the index finger. I was planning a trip to San Diego, and knew that such a heavy navy presence at a beach location, there would be some great artists available for said tattoo. I did my research, and found a few I liked. I was supposed to meet up with a friend from college who would go with me, but plans fell through and I was faced with going by myself, or cancelling. I decided that this is the kind of thing that defines your character - and so much of my journey with Braden has been lonely in some aspects, I decided that I could do this alone too. (Don't take this comment as not acknowledging my husband, or any of the hundreds of cheerleaders who have thankfully been on this journey with us... but in the physical, so much of it IS done alone, and that's what I mean.)


So Irish Joe not only did an awesome job on my tattoo, he gave me all the info I needed to find the artists we are looking for in Vegas, to do our future memorial tattoos for Braden. So having the courage to do this alone lead me to valuable information!! Here is a picture of the sample bee I found, and the one I got, in honor of his/our fight:-)


THIS WAS MY ACTUAL:



As we celebrated Braden's 7th birthday this past week, I was struggling to find something meaningful to share with you all. The words just weren't coming. And then, my friend Cindy who attended the party, sent me this amazing note she agreed to let me share. WARNING: YOU MIGHT NEED A TISSUE.

At the risk of sounding like Carrie Bradshaw...

Today, I had a thought:
People often ask, "Why me?" I certainly do... and my so-called problems can't, thankfully, compare to what far too many people must deal with on a daily basis. Illness, loss of limb, loss of life, loss of job, loss of sanity and memory and on, and on, and on. However, in a lot of ways I think it's even harder when these type of challenges fall upon the people who are closest to us... like your little warrior.

Looking around Braden's birthday party the other night I realized how quiet everyone was My dime store analysis was that these party goers have fought and continue to fight a quiet battle with the dignity that comes with an acceptance of what is truly unexplainable to their hearts. Quiet dignity and small celebrations are their norm.

So standing around, I... the outsider... was suddenly confronted with the question asked, I'm sure, by so many in my presence. "Why?" My pondering led me to the aforementioned "thought".

I recently gave a lecture to my journalism class about the bombings in Boston. I told them when something like that happens, you notice that thousands of people will run away... as they should! There is no shame in that ESPECIALLY in such a volatile situation. However, there are always a precious handful who run toward the danger. Who make a decision in their own minds and souls to volunteer for the job no one wants. They do this because they know someone will be saved by their decision or learn from it, or be changed by it and ultimately SOMEONE has to do it, Right? It's the same as a soldier who volunteers for the riskiest mission of all... because the soldier "gets" the greater good.
You with me?

So, What if, while in heaven, before all was "set" and all was "determined", our Father asked...
"Who will go? Someone needs to teach the humans about compassion, love, strength, priorities, patience, acceptance? These brave warriors need to be ready for lives that will not be as easy as many of their brethren. In fact, the souls who volunteer must endure great hardship that will not go away with time. It is a tough mission but every one of my children who comes in contact with, or cares for, or loves one of these noble volunteers will be touched in a way that will save their lives in every way possible. Who will go?"

And, Kodi, I picture Braden's hand going up and saying, "Lord, I'll do it".

Don't misunderstand... I'm not trying to suggest a theory that he chose this life per say. I'm just offering the concept that maybe your little warrior has always been a warrior.... long before he came into your life. Maybe he and so many like him ran toward this existence with a desire to change minds and hearts and teach lessons knowing what it could and would cost them. Also knowing, someday they would reunite with their "students"... and be able to fully express the love and appreciation they feel for having been given the opportunity to give so much of themselves for the greater good.

I hope I haven't stepped out of bounds with this or written anything that might upset you.
... It was just a thought.
I love you!
CC





I loved her "thought" and observations of the party. We are not the wild and loud and crazy bunch that most children's parties may resemble, mainly because our crowd doesn't "roll" like that - they are in chairs or other devices, so there are fewer "normal" kids running around and going wild. Instead we decided to "GLOW WILD". As I keep reading over what Cindy wrote, it just reminded me of how Jesus too volunteered for a job that nobody else would want. My child is not a savior by any means, but he does carry a strong ministry, and yet he cannot speak. His fight is demonstrated every day by overcoming the "odds" that the medical community wants to put on him, and he exceeds limitations defined for him by this incurable disease. My little angel here on earth - with his greek god curls, chubby cheeks, dimpled hands and little belly - my cherub has been shared with us by God. Not everyone gets to snuggle and hold one of God's special angels, and I am blessed I get to any time I want, for as long as God allows me to be his mommy. We lost another mito warrior this weekend, complications for a "routine" surgery. Nothing is "routine" in the mito world, and nothing can be taken for granted. I thank God for letting us celebrate a heavenly SEVEN years with one of his precious souls, and I hope we can keep tallying more days to come.

Thanks for reading and your continued support. Be sure to LIKE Braden's facebook page, we update it more often than the blog. He can be found at Beelieve in Braden... two "e's" in the beelieve, for our little BEE. From pregnancy we called him Baby B, knowing he owuld have a B name. But then our friends the Heckerts shared the following with us, and it's been all the more special. If you don't already know why the BEE is special to us, it's because science says that a bumblebee can't fly. Those little, fragile wings can not hold up that big, fat body. But God says the bumblebee can fly, and so the bumblebee flies.


The Braden fleur-de-bee logo is printed on his color-change cups as party favors:

A DAY IN OUR LIFE

Pic of Braden at the HPC Easter Eggstravaganza



I’m starting to face the fact that most of the time I choose to live somewhat in a state of denial regarding the situation we live with every day. Our son will never get better, he will not be cured, and eventually he will succumb to the complications of Leigh’s Disease. This is our reality, the reality we don’t really talk about that much – a reality that most days we just can’t bear to face. Our sweet little cherub will one day leave us behind. Living in denial is easy to do really, when we are so busy monitoring his status on so many fronts every hour, it can be exhausting just trying to keep up with that.

Most days, denial is really just more about SURVIVAL. We just try to get to the next hour, the next mealtime, or even the next day. If I could stop long enough to absorb everything that’s happening, it could overwhelm me to the point of never leaving my bed. I know most of the time we say Braden is “fine”, but sometimes there’s no good way to explain just how he is, or to really be able to find the words. Most days he is just “complicated”. We honestly have passed the days of being “fine”. There’s just no good way to explain everything we look at every minute of every day to explain our “complicated”. So I thought I could provide some insight by just sharing what happens on some of our “typical” days…

10 pm Braden didn’t pee 3x today, so we have to catheterize him again before we hit the sack. I wonder how many more times we will have to do this before his body gets with the program. Should we add meds to help him go? When should I call the doctor to discuss – at what point do I need to escalate this with him because it’s perhaps a bigger issue going on?

12 am Pulse-ox goes off. His oxygen saturation dropped. Suctioned, cough assist, back to normal. That’s weird; he usually doesn’t do this anymore. I wonder if he has a respiratory infection coming on.

1:30 am Pulse-ox goes off. He pulled off the sensor and it wasn’t reading right.

3:15 am Pulse-ox goes off again. Braden had a seizure, his heart rate alarmed this time. Calmed him down and went back to bed.

5:05 am Pulse-ox goes off again. Braden having another seizure, high heart rate alarm. Hmm… I wonder if we need to change his meds again.

6:02 am Pulse-ox goes off again. The sensor wasn’t reading strong enough to hold a read. Might as well get up and start his breathing treatments.

6:30 am We go to feed him, but notice his tummy seems a little tight. I guess we will give this bottle since it has most of his daily meds, and will monitor the situation. We may end up skipping the 10 & adjusting the rest of the feed schedule.

6:45 am Another loose bowel movement and another change of the bed. Wondering if we need to call the doc about multiple loose stools. He throws a hot flash and we add a cool towel to his face to bring his temp down. Hate that we have to leave for work, will monitor the situation via phone/text.

8:15 am Call to compound pharmacy, meds didn’t arrive.

8:20 am Call to reschedule a missed appointment.

8:25 am Call to insurance to find out why they didn’t pay a claim that has been sent to collections by the provider. Grrrrrr. Had to call back twice because they told me it wasn’t processed right by the provider. So after 5 total phone calls, I can only “hope” that this has been resolved. This only took an hour out of my life.

10:30 am Home nurse calls to say his heart rate stayed raised, so we give Tylenol to help with possible pain from teething or urinary tract trauma, hard to say what the cause is.

12:50 pm Nurse texts to say he finally went pee on his own. Had another bowel movement that went everywhere.

1:15 pm PCA (Personal Care Attendant) agency calls to say tonight’s PCA can’t show up. Great. We did have plans tonight after work to get a work-out in with a friend and Brad had a meeting too. Now we will have to shuffle schedule with husband and one of us will have to miss something. Again.

2:45 pm Call to nurse. He seems huffy or in pain. We try more Tylenol. No fever, just the hot flashes.

5:00 pm Trying to decide if we should delay this feeding, his tummy is a bit tight. Maybe we will just give half now, and try again in another hour with more.

6:15 pm His heart rate spikes again. Too late to call a doctor’s office. We try to reposition, try oragel in case it’s teething pain. After about 35 minutes, he finally calms down again.

7:30 pm Started breathing treatments early because he got really “junky” and kept dropping sats. After multiple attempts with breathing treatments and cough assist we get up some yucky mucous plugs. Whew. Had to hang up 3 times on friends during this “episode”.

9:00 pm Put B to bed, feed him one last time. Decide we need to cath Braden, he hasn’t peed since just after noon today. Boo. This time was tough, took me about 12 good attempts to get through his false tract to the right place. Frustrating. Required lots of patience and near tears to get it. OK, now maybe we can try to get his bottles made for the next few days, it takes about 45 minutes – then try to get to bed myself.

10:45 pm Lights out, TV off.

11:05 pm Pulse-ox alarm. Oh joy. Here we go again.


So this is simply a representation of what most days consist of. We are constantly monitoring multiple systems – any of which could require a call to the doctor or a trip to the hospital at any moment. Imagine a life where you NEVER, EVER get to fully relax, because you have this other human being relying on you for everything. Remember what it was like to have a newborn? “New parent” adrenaline, never sleeping, wondering what every little sound meant or if the baby was getting sick or developing right… this is our life. EVERY SINGLE DAY. We are mentally, physically and emotionally exhausted, and we never get to relax or “catch up”. We can’t, we don’t have that luxury.

At this point you might be thinking, “Wow – I know other families raising special needs children. I never really understood everything they face, on a daily basis. I knew about the occasional (or frequent) trips to the hospital, but I didn’t realize how adrenaline-ridden and anxiety-filled just an average day could be for them. How can I possibly help ease that burden?”

For every family, these answers may be different. But some ideas include taking care of household things that need to be done, that sometimes families like us can fall behind on, because of our constant juggling act. Things like cleaning the house (bathrooms, vacuuming/sweeping/mopping the floors, dusting, doing the windows, and even spring cleaning items like cleaning fans, windows, baseboards, etc) changing the air/water filter, mowing the lawn, doing laundry, taking prepared meals, going grocery shopping, cleaning the gutters, power-washing the driveway/patio…. All of these would be so helpful, and at times are really just a “luxury” to be able to get to all of them. The biggest gift of all? BABYSIT. It’s a rare occasion for us to get to have a “date night”, and trust me, with an 80% divorce rate among special needs parents, we need all the help we can get to keep the relationship strong. We don’t get to do that when all our focus is on our child. Send gift certificates for dinner, movies, massages, hair appointments, or other entertainment – all of these are pure luxury items as we don’t often have the funds to spend on ourselves because our medical bills and non-covered expenses like supplements, medications and medical supplies can be pretty steep.

We need your notes of encouragement and your hugs of support. We need you to show love for our special needs child and embrace them for who they are. These are sometimes just the thing we needed to adjust our attitude and attack another day of unending advocacy work on behalf of our kid. And most of all, we need prayer. Prayers to find physical strength to keep up with the demanding need of our child. Prayers to find mental strength to keep fighting the insurance companies, educators, service providers, legislators and auxiliary care givers to keep everyone doing the things that are best for our child. And emotional strength to overcome the depression that comes with a constant grieving process, to overcome the negativity of society or even the medical community that wants to place limits on your child, to overcome the constant roller-coaster of emotions that go along with the ever-changing status of your child’s health, and to overcome the anxiety that follows the adrenaline high’s.

When you see our patience wearing thin enough to match the soles on our feet trying to keep up with this juggling act (that there are no classes for), maybe just take an extra moment in your day to reach out and make a kind gesture. The non-monetary ones mean just as much as the others. Come over and do the dirty dishes in my sink – I’ll place you on a friend pedestal for life, and probably cry as I hug you for doing something nice. It all means the world to us, when most of the world is afraid of us/our children.

So this really long post all just to tell you we appreciate the anything and everything you do for us along our journey. We know it’s hard to know what to say, when there really are no words that tell a parent’s heart that everything will be OK, when we know that Braden’s life expectancy grows smaller as the years pass and the medical complications increase. When his time has come to be with the rest of God’s angels, we know this loss is one we will never get over. But we do hope that the lives that will be touched by Braden’s story of FIGHT, and the stories that will be told of our precious son – that these memories will sooner than later turn our sad into glad, and our sorrow into appreciation and gratefulness for the time we have been given.

The Difficult Truth to Share

As we continue along this journey with our precious little soul, many of you know the battles we have fought. Sometimes we win, sometimes we lose, and sometimes there just isn’t any winner at all. This week we once again were confronted with our deepest fears of losing our son. We celebrated the life of our sweet friend, baby Lawson who earned his wings a month ago. We keep his parents as close as they will let us, and we had the honor of hosting them for dinner this week. It’s amazing how much in common some special needs families have, even when our circumstances may be so different. And there are some things you just can’t talk to other parents about. We don’t talk about the guilt or the fear with many others who don’t walk in our shoes.

This fear we face, it’s a fear we know that is inevitable. So maybe it’s not a fear of the “what”, as we know that is mortality. Perhaps it’s just the “when” we are afraid of, because we just don’t know how soon or how far away that might be. Most parents will luckily never know the agony, the anxiety and the depression we hide every day. It’s there, even when we don’t let it show, even when you can’t see it or you don’t even think we carry that. You may not see it because we choose to focus on the positive, but there are daily moments waiting for us just around the corner when we are faced with all the scary realities of raising a terminally-ill, medically fragile child.

We carry this burden of “survivor’s guilt”. Why does Braden get to live on past his prognosis when so many others have been called to heaven? We know that this too will be our reality one day. Yet as sick as our bubba may be some days, we still get to hold him, listen to his sweet sounds, snuggle him and whisper in his ear how much he is loved. My heart already aches for the day I’ll no longer get to enjoy these simple things. One day our battle will be lost, and our angel will be returned to heaven.

And then there is this other fear we carry – whether our child is still with us or earned their wings… it’s the fear that someone will ask about our family life, and then the guilt we feel when we have to share our story. When I’m in situations with new people, I NEVER bring up kids or family… mainly because making the introduction that I’m raising a medically fragile terminally ill child means this regular, “normal” conversation piece for the other person has now taken an unexpected turn. We know this will make the other person feel bad for even asking or bringing it up. And while we wear this badge of honor proudly, it’s certainly not something we want to bring up, knowing this will inevitably put the other person in an uncomfortable situation where they are riddled with guilt for even asking, as they try to gently ask a few more questions so as not to be dismissive or uncaring, and figure out when it’s best or even if it’s OK to move on from the conversation. We feel sorry for you. We feel guilty we have to even talk about it – it’s not exactly cocktail conversation that keeps the room lighthearted. I know for you normal parents out there this may seem unloving or like some kind of embarrassment for us wanting to keep conversations about our kids to a minimum or not at all, that’s not the case. We want to be just like you and tell the world how amazing your child is. I understand this desire and this need – I’m jealous of it. But I’m also feeling guilty when you politely ask about my child. It means I’m going to deliver news you are not prepared to hear, and it feels like we inadvertently stop “normal” conversation with our abrupt announcement. I feel guilty that somehow this conversation is suddenly now "all about me" and I didn't want it to be that way.

On the other side of the coin – conversation with your spouse or friends who do wear your shoes looks starkly different. Today I caught myself texting casually with my husband about a possible surgery for Braden. I thought about how strange our world would seem to anyone else. That these are conversations most parents would be having at the dinner table or on the living room couch, having set aside special time for such a serious discussion or consideration. I laughed out loud. An outsider would be shocked at the casual conversations we have about funerals, medical procedures, life insurance, seizure control medicines, medical trials and things like urinary output, fecal texture, sputum (snot) color… (My secret “revenge” to life circumstances is that occasionally I get to take a sick joy when a nosey person within earshot listens in to my conversations. I wonder if they become more choosey about choosing to eavesdrop, ha ha!)

Every day is a battle – a choice. It’s a battle to overcome all the fears just bubbling underneath the surface. It’s a choice to suppress the fears and find the positive in the moments we have left. It’s a choice to put on a smile and not dwell on the things that could consume us whole. But let me share with you what most special needs parents won’t think to say or vocalize, or are just too afraid to share for fear of losing your support. We need you to send us encouraging notes, to keep wrapping your arms around us when we need a hug, to keep trying to be there for us even when we don’t know what to ask for. So we don’t say “it”.

So here “it” is… I think the toughest thing we carry, is your fears and your anxieties too. We not only carry the burden of everything that comes with raising this child, but the burden of carrying your fears about our child/situation too. We don’t want our lives to weigh heavy on yours too. But we try to stay strong, not just for our own sake and our child’s, but for your sake too. We know that if we stayed curled up on the bed in a big bawling mess, it would send you running back to the safety of your “normal life”, and we wouldn’t blame you. We are afraid that sometimes just being vulnerable would be too much for you to handle. We usually don’t share all the gory details for fear it will break you down too. And sometimes I think we find ourselves believing that if we stay strong for you, we can stay strong for our own sake too. Because once we break down and allow ourselves to just “go there”… we are afraid we might not be able to pull it all back together again. And we have to. We have to just keep going, or it’s all just going to fall apart, and that’s just not really a choice for us, because somebody still has to take care of this child.

As our friends and supporters, some of you are more aware than others that our daily issues really are life and death. Some of you catch yourself starting to share your worries that little Johnny might have another ear infection or that little Susie might not get invited to the latest slumber party before you acknowledge that your issues may pale in comparison to ours. But can I just assure you, that we deeply appreciate your acknowledgement of how unimportant these things may seem to us… but we do love that you share your life with us, and we hope you still do. It allows us to feel some kind of, any kind of “normal”. While I may catch myself being slightly jealous of these things, we are genuinely happy for you and happy that you are sharing your life with us and not leaving us isolated in our crazy little world. If this sounds familiar, we appreciate you and please don’t stop what you are doing.

If this doesn’t sound familiar to you, you might be busy dumping your own silly drama on us. And frankly, we carry enough burdens of our own. It’s not fair to expect us to carry even more of yours. While we do care about the difficulties you also face in life, please be careful to not just dump all your petty concerns and worries on us. Yes, we are also proud and happy that little Johnny is so good at sports that he may have to choose between a baseball or basketball scholarship, but we don’t need to carry the “anxiety” surrounding the choice he will have to make between braces or invisilign and how you are going to pay for it. We have enough anxiety deciding which surgery we should have next, or if it’s worth the risk because even a simple procedure under anesthesia could be fatal. We have a pile of medical bills that could stretch to the moon – I wish all we had to worry about was paying for an “elective” procedure. We know you mean well, but please don’t tell us you “understand” what we are going through because you remember what it was like when little Johnny had to get his tonsils out, while we are struggling to make decisions about a life-saving surgery. I promise not to minimize your experiences that were likely very emotional and tough on you as a parent, if you promise to just offer us a hug of support when we let you in on these tough decisions we are forced to make. We want to be there for you too, as the choices we have to make as parents are just different than ours, but no less important to us, as this is the journey your family is on, and we won’t minimize the feelings and emotions you are struggling with to “deal”. We want to share in your life’s journey too. Believe me, we are super-glad you can’t relate or understand what we are going through… so just show us love and listen.

I’m sorry if this post is a little more blunt than usual, or not as uplifting as others. Sometimes I just have to “keep it real”. I need other special needs families and Leigh’s disease and mito families to know they are NOT alone. And they are allowed to have these feelings too. Today is national rare disease day. As I read hundreds of statistics, I realized how isolating and alone many of us can feel, since there aren’t a whole lot of “support groups” for families facing rare diseases (hence, the “rare” designation). There are no manuals or journals or books written to help guide us along through the choices we have to make, and that too carries a burden. But it’s a burden we don’t have to carry alone. We can be there for each other. And after having a bad day every now and then, we can pick up your burdens again too. Please don’t misunderstand that we don’t want to hear the details of your life – we absolutely do. Just be aware of how long you may go on about it, try not to dump more of life’s worries on us and we promise to be genuinely happy for where life takes you. (In fact, can you “Take me with you”?!)

We need you. As I was writing this post, it struck me to write “it takes a village” to raise a child. But you know what? I think it’s us as parents who need the “village” more than our children do most days. Please continue to play a role in my village, just try not to be the “idiot”. (Sorry my sarcastic side and sick sense of humor won here!) But hey, somedays it’s the only way I survive this crazy journey!