Sunday, March 24, 2013


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.

Friday, March 01, 2013

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!