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!

Seahorses

Brad and I have held a special place in our hearts for seahorses. One summer while in Baltimore, the aquarium had a special exhibit of seahorses. It was a really neat entire section full of just seahorses. It was there we learned a few surprising facts as we meandered through this world of floating little beings. We learned that seahorses choose a partner that they stick with forever, a rarity in the animal kingdom. Many seahorses are monogamous, meaning they mate for life. The male and female have an elaborate, daily courtship ritual, involving a "dance" where they entwine their tails, and may change colors. Of course, my second favorite fact is that the males carry the babies. HA HA

Maybe that’s why we were so drawn to them – some inspirational parallels to our human relationship. I painted a ceramic seahorse for Brad before we left Chicago to move to Baton Rouge. And maybe that’s why we were so drawn to the light up seahorse for Braden. You know the one – it’s like the glow-worm. The tummy lights up, it plays music reminiscent of both nursery and weddings… like it too has it’s own little “dance”. Our “Oliver” (seahorse) has been such a big part in Braden’s life too… it goes on trips, it goes to the hospital and it calms him anytime he gets anxious or upset.

This Christmas, I saw this ornament, and I just couldn’t leave it. I saw it, decided it doesn’t go with anything I’ve got for my patriotic red, white and blue Christmas trees. I was about to leave, and something just kept telling me to go back, it’s almost like I felt I would be leaving something very important behind if I left without it. I went back. It just spoke to my heart. Seeing this beautiful representation of two seahorses kissing, almost intertwined in a heart shape. An everlasting kiss, an everlasting embrace – I just couldn’t walk away and leave it behind.

To our friends, Kyle & Mindy…God has brought the two of you together for reasons we might already know, and reasons we may never know. I can tell you first-hand that going through something extremely difficult as a couple can either tear you apart, or solidify your relationship and its foundation. Everyone can already see how your difficult but precious journey you began less than a year ago, has brought you together. You two have been a unified, loving, strong, courageous couple who has chosen to face this battle together, hand in hand. I see you intertwined in loving embrace, just like the seahorses. They already had special meaning since Lawson loved his little “Oliver” so much, I just had to share with you how they’ve come to be special to us too. God has been nudging me to share this story with you. Maybe it’s just the suggestion you needed for a memorial tattoo? Giggles… I’m including the picture of the ornament, it’s just too perfect and I just had to share it with you.

Hug them a little tighter

I held him a little closer tonight. I took in everything I could about his hair, cherub cheeks, chubby gator paw hands, how sweet he looks when he’s asleep, and of course breathed every moment in while he sang to me for awhile. We have been blessed with so much “extra” time with him that in the day to day I can sometimes forget to be thankful in each moment. Tonight our reality hit close to home, and it feels like my heart is pounding right out of my chest – that it’s been ripped out, and I can only imagine the pain felt by the parents of our little friend who earned his angel wings today.

We were blessed to meet such a sweet family. Baby Lawson’s parents are sweet, kind, gentle, loving, graceful, courageous and just amazing people. Kyle & Mindy Herbert were gracious enough to open up and let us in on their journey with their son Lawson. http://www.facebook.com/fortheloveoflawsonhebert?ref=ts&fref=ts I think about the day I got to hold him for like an hour, and I think about it often. That precious little face I got to look at up close and personal, and I know I was lucky to meet one of God’s special angels and hold him in my arms. I didn’t want them to leave. I just related to them so much, it felt like we were really “family”. It’s hard to understand the difficult choices we face as parents of a medically fragile child, even though we feel the love and empathy from those who care about us – to find someone who really does understand can be tough.

Mindy and I were texting back and forth when I found out Lawson was hospitalized for pneumonia. I knew I had to be there for them… I remember the first time we had to bring Braden “back” to the hospital after our NICU release. It was terrifying, confusing, exhausting and I just wanted to be there for them. I had training scheduled all weekend, so when we texted on Friday, we decided I would come to the PICU Saturday evening after training. Today I learned the value of every precious HOUR. Lawson would earn his wings before I could leave work today. My heart sunk when I got a text from her sister. I froze. I got numb. I got hot. I could barely breathe. I would not get to kiss that precious boy one more time. The guilt. I should have gone last night to see them, I should have just rearranged and gone. So I get mad, then another wave of guilt, another round of hot, searing tears. And I am reminded that for whatever the reason, I was not meant to be there.

My mind takes me back to the day I lost my friend Stacie. I got the call she finally succumbed to esophageal cancer a mere 15 minutes after I left her room at the hospital that morning. But God’s plan is perfect. Braden was in the hospital at the same time Stacie was in her last days – and I got to see her every day. I am SO grateful for that time and that chance to bid farewell to an amazing person. If Braden had not been that sick, I know I would not have gotten all that time with her in the end. It’s all in his plan and all for his purpose. Ecclesiastes 3:11 “He has made everything beautiful in it’s time”.

So I calm down again, breathe, and say another prayer for Kyle & Mindy. If my pain is this great, I cannot fathom what they are enduring at this moment. Then my own fears about our son kick in too. I can’t help it. I know that we too will be in the same “club” with Kyle & Mindy one day. Hopefully it will be later and not sooner, and that we will get to see Braden turn seven. Perhaps some of the grief I am feeling is for my own future loss. So I’m grieving really for two things at the same time. I think sometimes when you grieve, you also grieve the losses you’ve suffered before this moment too. It can be overwhelming. But then our friends pick us up and we try to put the pieces back together as best we can. Sometimes a minute at a time, then an hour, and soon enough you can find entire days where you are not overwhelmed by this loss.

Can I please ask a favor to those of you who will know of someone who has suffered a loss? Please give the family some time, a day, a few days if needed to let them process the loss and make their own announcement about it before posting your condolences on their pages? Please consider that announcements like that are typically made on their own pages after the entire family has been notified. It hurt me to see that other people wouldn’t consider something like that before posting. Please don’t misunderstand me – every kind word means the world to the person receiving it. But also understand that it is the place of the FAMILY to make that announcement publicly and sharing it via social media. Please give them this opportunity to share with the “world” when THEY are ready to do that. I couldn’t imagine how my own family would feel if a friend had called to check on us and I offered the information of a loss – and the friend went and posted condolences on our pages before family had been notified. Unless asked, it’s just not right, or your place to do that. Take a moment in this instant notification society, to consider what the family is going through, and everything that may need to take place on their end first, to respectfully notify their own family.

Let me end here… Savor the precious moments and memories. Say “I love you” before you get off the phone. Hug & kiss them goodbye – every time. Send them a text to tell them you are thinking of them. And certainly don’t waste an opportunity to leave things left unsaid when you care about someone. We know all too well how short and precious life can be. I hope we do our very best to make the most of the moments we are given. I hope the people in my life that are dear to me know just how special they are to me. I hope I gave my sincere effort to share with others loving kindness, humor & laughter, joy, appreciation of self, a positive perspective on our own circumstance, insight and discernment. Don’t wait for tomorrow.

3 Lessons I want to share with you

You. Yeah you. I'm talking to you - the parent of a special needs child, or the people around them who know/love/care about them. It's extremely difficult as we juggle nursing schedules, therapy appointments, specialists, medical testing, meetings with teachers and the exhausting care our children require - to just take a TIME OUT. Time to breathe, relax, reflect. When you are in the middle of the chaos and hectic nature of our lives, it can be tough to appreciate just how far your family or child has come in a year. It's so hard to see growth, new things they do, progress in their education or physical therapy. Thank goodness for those around us who help remind us of these things. I'm a little wiser this year, and there a few things I'd like to share with you.

1. APPRECIATE THE BEAUTY THAT SURROUNDS YOU. Take time to just be thankful for the blessings you've been given. Sometimes amidst busy schedule, piling bills and stressful situations it can be difficult. Just when I had convinced myself my son would never do anything "NEW", as his medical involvement begins to mount and we address more medical difficulties... the blessings began to show up. Braden lost his first teeth, he is trying to sit up more on his own, he is raising his arms to stretch (along with the leg shaking as he stretches them), he began making direct eye contact (something he hasn't done since he was only a week old) and he began having more immediate response by starting to "talk" back soon into interaction with him. Take time to give thanks for the little things, and sometimes God will bless you with bigger things. The eye contact & "discussions" we now have are BIG THINGS to me - it's like he actually is trying to "talk" to us. Amazing, thank you Jesus.

2. GOD DOESN'T GIVE YOU MORE THAN YOU CAN HANDLE This little quote, while shared by some of the most well-intentioned people meant to offer comfort, still has that little double meaning. In my head, I know it's also a little piece that's also meant to offer themselves a moment of relief as if to say "Thank God it's you and not me". That's OK. Really. I'm sure I might try to offer the same sentiment to others, and yes - even mean that second part too. I get it. This life is not easy, and I don't expect a single soul to somehow be jealous of the life we've been given. Over the past few years, however, I've been close enough to others who have gone through some very difficult circumstances. And I've seen first-hand how some people, really CAN'T handle everything God puts in your path. I've seen people shut down completely and barely be able to do life after such tragedy. It has been in these moments that I've come to understand why God chose us to be Braden's parents. For as long as our precious child chooses to fight for life, we don't have a choice but to keep fighting for him!! We cannot let him down!

3. SOMEBODY STOLE MY SUPERWOMAN CAPE, BUT I DON'T KNOW THAT I WANT IT BACK. Probably my greatest joy in life is doing things for others. That takes time. I've come to realize that Superwoman probably doesn't need 8 or 6 or even 4 hours of sleep like I do, which is why she can do it all. I can't. I've tried to keep up with the things I liked to do before I had Braden, or even the things i've somehow managed to keep up with over the past few years... but this year, I took time for ME. I used to feel SO MUCH GUILT for doing anything for myself, like somehow that made me a bad mom. But I've come to realize how much better I feel about myself, and how much that energizes me to give even more of myself to Braden. So the things that fell off of my perfect record this year were things like birthday cards not getting mailed, frozen meals not being taken to other families in need, not having time to "be there" for others facing life drama, not serving on as many volunteer committees as I'd like to, etc. But my New Year's resolution is to cut myself some slack. In the end, it's my own family that needs me more than anyone else does and they deserve the best of my attention. So to you mother's who think you need to live a perfect "Pinterest" or "Good Housekeeping" life... cut yourself some slack too. Be the best YOU for those who deserve the best of you - INCLUDING yourself:-)

THIS YEAR: 2013 We are praying for some things for our family and we will just keep praying for direction. As we put together holiday cards, the family always asks about when we will be celebrating Braden's birthday and what it will be like (because you know we always have a big party & a theme to each one). It always catches me off guard, and I get more emotional than I usually do. I realized that we are planning a SEVENTH birthday party for Braden. Wow. Let me allow that to sink in. Our doctors told us at 2 1/2 that Braden was already on borrowed time and that any time we get with him past 2 is a blessing. SEVEN is a Godly number, and i truly hope we get to celebrate the life of this little child God has blessed us with. We never take a day for granted, and some days I'm overwhelmed by the time we've been given, and even afraid of how close we may be to the end. That's a truly honest reflection of the emotions that accompany raising a terminally ill child. I know I've shared this link before (on Facebook), but wanted to share it again here as a reminder, and as a piece of perspective for those looking to relate to those of us raising special needs children. http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

I hope your 2013 brings you many wonderful blessings. Thanks for taking the time to read this LONG post! The Wilson family: Kodi, Brad, Braden