Thursday, January 28, 2016

Good People

To be known. 
To be loved by a tribe. 

A sisterhood that was made in the awkward years, through fights where no blood lines tied you together, just the grit and hard work to make it through. 

I count myself lucky to have these women. The ones who pull me up. Who daily connect with me to make sure my mind (and my children) are still intact. 

The ones who have cried with me over love lost, stood next to me as I promised forever, have quietly encouraged me as I have welcomed babies into the world, who have cried with me over the imperfections of genetic codes, and celebrated the beauty of this life we live.

They have fed me, clothed me, and loved me through the hardest of growing pains. 
My people- they are good people. 


Wednesday, January 27, 2016

Stand Strong Weary Warrior

All around me the battles seem big.
The whining and crying and deep deep frustration from my four year old, who is fighting so hard daily to be known, to be understood.
The two year old ears that find it hard to listen, the two year old will that finds it hard to obey, and the two year old soul that needs oh so much attention, tenderness, patience and fierce love.
The baby who loves to be close to mama in the hours of the night when all should be sleeping.
The ones who are over tired, over booked, over worked, discouraged and financially strapped.
The ones fighting for their lives, their health, waking daily in an uphill battle, but not giving up.
The ones mourning the loss of life, gone to soon.
The ones waiting so tenderly for the call that a baby needs a home, and that home is theirs.

The battles are big. They are hard and heavy handed.
Stand Strong Weary Warrior.
You are not alone in these deep places.

Thank you Jesus- for Your grace abounds in deepest waters.


Friday, December 18, 2015

Motherhood. Who knew.

I have to remind myself almost daily that these years are suppose to be the crazy ones. That having little kids isn't easy. It feels like time just rushes together and yet somehow the two hours from 4pm-6pm last an eternity.
I looked at my work schedule for the first six weeks of the new year and instantly felt overwhelmed. Desperately searching for when I would "get a break". Truth be told I never have worked so many hours since becoming a mom. And while I know I am exactly where I am suppose to be, the demand of it all feels heavy.  It seems impossible to be in charge of so much and to do it all well.
It is funny. I have always dreamed of having a family. A big one. I didn't always want to be a nurse, or have a love for sewing and crafting. But I always wanted to be a mom.
And yet the mom job is so much harder than I ever imagined. It seems crazy to me all the self sacrifice it takes to "have exactly what I wanted".
Of course I figured I would stay home, have endless funds to do fun things with my kids and take vacations with them- all my kids were of course healthy, and EXTREMELY well behaved and they were all excellent sleepers- and the sickness-you know, the endless runny nose, cough and fever that never leave small children- yeah that didn't exist in my mind.
(I am giggling writing this. But it's true! It's kinda what I dreamed this life would be like!)
Instead I am humbled daily- serving the tiny humans I created. Working hard outside our home, while trying to manage everything in it. Driving what I call "the bus route" to and from Emmaus' school each day. Working to try to understand what she needs and her frustration at a low level.   Pleading with my two year old to stop crying, whining, and to try her food. Annoyed when my baby is still waking to eat multiple times a night. (Seriously we need to sleep train- but I am just too dang tired!)
I have to remember to stop and enjoy the stage we are in. Even in its hardness. To take a look around and be less overwhelmed for the housework that never ends, the sleep that never happens, and the snot that is ALWAYS on my clothing.

Motherhood. Who knew. 


Tuesday, December 1, 2015

So much sickness.

I haven't written because I have no words. And well I have three kids and I'm working basically full time so I just haven't had the time or energy.
It has been a hard few weeks. We are going on 7 weeks of sickness. Real sickness. A viral pneumonia for Emmaus that resulted in a hospital stay for a week. A week after she was released I had a kidney stone that required surgery and me just feeling crummy. Then I got shingles- cause that's likely. Followed immediately by a significant cold. All the while Emmaus still hasn't completely gotten over her sickness, shiloh and the baby have had colds too, which means no one is sleeping, or happy and we all are overall just pretty miserable. Then Sunday Emmaus spiked another temp and has a pretty bad respiratory infection again.
Oh- and apparently postpartum anxiety is a thing? I never knew! I am about the least anxious person in the world and suddenly my mind races to the worse case scenario at all times and I am terrified of all the very real things happening around me, no matter how unlikely they are to actually happen to me.
I am discouraged that we have affinitor (Emmaus' new med) sitting on our kitchen counter. And since it has arrived she has not been well enough to start it. It feels unfair. All this sickness feels personal. Like an attack. (I'm sure it is). Emmaus has been pretty darn healthy for over a year and right now when we have this med to try all of this sickness has come out of no where. It stops me, makes me pause and once again realize no med will heal her. It makes me put my trust back in the Lord.  All of this sickness drives me to pray. To ask for the Lord to rescue me from these trials. To ask the Lord to heal her, to take this burden from her. Because I simply cannot do anything else.

This mothering gig can be lonely. The days are so long. The whines and cries so loud. And when I am alone with my tiny humans I sometimes forget I am not alone in this. I think the isolation in motherhood of having small children is intense. But I am not alone. I know so many of you that I know personally and that I haven't ever met are fighting the same battles. The daily grind of raising tiny humans. Fighting to find the joy in little moments surrounded by mass amounts of chaos. I mostly like chaos, but all of this sickness I can do without.

One last thought. I realized I HAVE to start taking care of myself. I take care of everyone else. But I neglect myself. And I am not just magically going to start taking care of myself! I must form the habit of doing this.  So, I've started drinking water. (Coffee doesn't count as water- who knew?!) I have started taking vitamins. (A prenatal, vitamin D, and Magnesium- to help combat the anxiety) I am trying to get to bed earlier (cause sleep...duh).  And I am washing my face every day (which I have never done in all of my life) Basic huh? A little sad I didn't do any of that stuff before. But I have to start somewhere!
A couple more goals- (Also EXTREMELY basic)
-Go to the dentist every 6 months. Because I pay to have that benefit, so I should use it- also I never EVER EVER want to have to get 5 cavities filled again. (Yes- I had five cavities, cause I rarely go to the dentist and I had to get them filled (while I had two cancer sores) between having the kidney stone, and getting shingles- I'm tellin ya it's been a FUN month!)
-1 day a month get a babysitter and be kidless. And rest, or do something that feels life giving to me!

Okay I lied.  One more thing. If we aren't facebook friends or you haven't seen it yet- go check out this video. Our church gave us the opportunity to tell our story. And the hope that we have in raising a child with special needs. And despite this post being a little gloomy we truly are so blessed and do have so much hope in our lives.

Thursday, October 29, 2015

Chronic Crisis

For the last few months I have been thinking a lot about being a family that lives in “Chronic Crisis” if you will. 
We all will have “acute crisis” in our lives. You know, an unexpected illness, hospitalization, job loss, even a baby being born I think can fall into this category.  A time when as a family, or a person you just need a little more support from those around you.  But after a few days, weeks or months things return to normal.
I think as a society we generally are really good at attending to acute crisis around us.  We bring meals, send gift cards, offering to babysit, clean, do laundry, ect.  It only takes a few minutes/hours out of our lives and we can see the tangible benefit to those who need the help. So naturally it makes us feel good to help out! It’s rewarding!

But what about the family that due to any number of reasons lives in “chronic crisis”?
Four years ago I didn’t even know this was a thing.  And honestly sometimes I just feel like a wimp and wonder if I am just making this all up. But I don’t think I am.

We are a special breed- and we need extra help. Always. Now I am not talking about the level of extra help that those in acute crisis need.  But we need something that is harder I think- we need consistent help for years on end.  Lets be honest, there is nothing glamorous about helping this type of family. Its like choosing to loose weight with diet and exercise (the hard, long way) instead of with a fad diet (the quick, instant result way).

Having a child with significant special needs makes our life look a little different.

*Routine is important with kids, but when you add a special need it often is the most important.
*Sleep is rare. And I don’t mean we had to deal with the infant stage, the cry it out/ not wanting to go to sleep stage, ect. I mean for years now it is RARE for Dan and I to sleep through the night. We have had seasons of almost no sleep, but even at its best sleep isn’t a consistent thing.
*We are always on high alert, and high entertainment duty. Emmaus does not have the ability or attention span to give us 15 minutes of her being content. We are always watching for a seizure, catching her when she stumbles and desperately trying to avoid meltdowns. IT IS EXHAUSTING. 
*Do you remember the stage where your kid couldn’t communicate what they wanted? And they were super frustrated about that? They would have meltdowns over everything? Yeah- we are there. And have been there for years now.
*We deal with the normal illnesses kids get, but then on top of that we are constantly adjusting meds for seizures, and working on the things kids who develop typically just learn- so we do extra therapies, and lots of practice.
*We pay our normal bills, then spend time chasing down medical bills, resubmitting them to insurance, applying for financial assistance programs when insurance denies things, emailing doctors, therapists, and pharmacies- because inevitably we are almost out of meds and our shipment didn’t come….AGAIN. This administrative roll (I jokingly say I am Emmaus' administrative assistant) takes A LOT OF TIME!
*We work extra shifts to cover specialized preschool, couples counseling or even to pay for a vacation with our spouse.
Let me just speak to vacation (as it is kinda a sensitive subject for me). Living with chronic extreme stress makes our marriage fragile. So taking a few days away together isn’t a luxury. It is a necessity. We are committed to making our marriage work and so having a few days of rest, away from the stress of it all is important. So if you see us on a couples trip or family vacation, its not cause that is a luxury to us, its because it is a necessity. It’s because we realize a few days away, will make all the difference in our ability to be married and do it well, or to parent well.

So how can you help a family in chronic crisis?  I asked some families who also have kids with and live in chronic crisis. Here is what they said when I asked what they wished people understood/how they could help.

*I find people will often ask how they can help, but I cannot think of simple way to respond. I would like people to understand, jumping in by just doing simple things is great- make a meal, offer to be around to help, clean my house, or if they are brave and capable offering to do bigger things like watch my kiddos? I have a hard time knowing what ways to ask for help and I always tend to take everything on myself even though I am drowning. I think I am so focused on the big crisis I feel I am wading through I can't see the simple practical ways people could help me, so I just do it myself. To help me, I need people to be pushy because I am always 'fine' and don't want to burden people, plus I am honestly blank when people ask me how they can help.

*The biggest realization I wish people would see is that while we still have our child, the grieving doesn't end, it is like an ocean. Sometimes we have calm periods, and without explanation, TSC reels its ugly face reminding us of diagnosis day all over again.
We’ve been most touched by an extended family we didn't even know we had. A coworker of my husband had been sharing my son’s journey with his church 2 hours away from us. Unbeknownst to us, they held a fund raising at their church for our family, raising $4,000 in a church congregation of 100

*Consider what you realistically can do for our family. And offer to do it. Consistently.  Let us decide if this thing is helpful to us at this point. If we decline let us know you love us and want to be a support us. If you think of something else at another time offer again.

*A Lot of states offer respite care- and a lot don’t or there is a huge waiting list. Ask if the family gets respite care! If they don’t ask if you could help. Let them go to the store (a task that can be nearly impossible with a special needs kiddo), do some yard work, go on a date. Because to just get a babysitter isn’t feasible. We don’t know when a seizure will start and not end, we have to trust someone capable of giving meds.

*I have a neighbor that texts me every week asking if I need anything from the grocery store.

Supporting a family, choosing to stand next to them, choosing to help long term isn't for the faint of heart, it isn't easy- and honestly, I don't know that I would be/am any good at it. But it is a pretty amazing gift. And those of us living in need of consistent help are forever indebted, we are amazingly grateful. 

Thursday, October 22, 2015

Survival of viral pneumonia and other thoughts.

Today as I arrived at the hospital to pack up miss Emmaus and bring her home after our week long stay for viral pneumonia there was a mom laying in the middle of the parking lot cradling her son. He was obviously delayed, non verbal, a husky seven year old, weighing close to what his mom weighed.  She was half trying to get him up, and half patiently waiting, cradling him. As I approached asking if she needed help, she calmly replied "He's just having a seizure. I just have to wait until he comes around and then we can get out of the way."
I sat with her as he became more alert. He looked at me intently and reached out to pat me. I told her he reminded me of my daughter. The mom confided his seizures scare her. I told her I truly understand.  It was just a few minutes, but to make a simple connection, in a moment of true helplessness for that mom who was watching her boy battle his own body- for her not to be alone in that moment- isn't that what this life is all about? I found myself asking how do I best support those I live with on a daily basis? For the strangers I meet?
I often wonder what it will be like as Emmaus gets older. Will I be that mom cradling my sweet baby as she has a seizure in the parking lot- other people totally freaked out, and that just being our normal? I sometimes fear her getting big, because I know it will be harder for Dan and I physically.  It is one of those things I try not to think about much, because I know I do not have the grace to handle those challenges yet, but will in time.

This has been a week of us needing help. Lots of help. We have had meals brought, so many people babysitting, people cleaning, grocery shopping. Our tribe stepped up. We were not alone.
Although it wasn't an ideal circumstance both Dan and I reflected on truly getting quality time with Emmaus this week. Since we have three girls we rarely are 1 on 1 with her for extended periods of time and to truly have that time was a blessing. Even though her words are few she has a great sense of humor and I truly think she's funny!
She would request things and then laugh and say "Nooooooo" if it was something she couldn't have. My mom taught her to fake snore- which truly is her making a "shooooooo" sound. And whenever she would lay down to sleep she would look at me out of the corner of her eye and do this.

This week thanks to our amazing support we truly smoothly sailed through the challenges of having an infant, a two year old and then Emmaus in the hospital.  It wasn't easy, and my mommy heart was definitely pulled in three as I felt each girl needed me in their own way. (Some being more vocal about their needs than others!) But we survived and I am so thankful that tonight we are all under the same roof.


Sunday, September 27, 2015

Back to work I go!

I have no idea how eight weeks have passed since Lennon arrived.  I officially start back to work tomorrow and I would be lying if I said I wasn’t a little sad about it.  This is the first time I am returning to work after having a baby and am truly excited about my job, and not longing to stay home like I have after the last two babies. But it is still bitter sweet.
I know I am entering a season of work, where the wide open space in our schedule that came with me being on maternity leave will disappear.  I will be forced to buckle down, be super organized and our schedule will have to be as planned as ever to pull off having three very young children, two different work schedules, Emmaus’ school and therapy schedule, meals to plan, not to mention church and social schedules.  I am excited about the opportunity to meet some of the financial goals we have set for ourselves. To get back on our feet a little after a self-funded maternity leave. All while doing a job that I am really loving!
I know I/We can do it. But there is a little fear that this transition from 2-3 that has gone so smoothly is about to get hectic, and hard.  I know my capacity to handle things gracefully will get thinner just because I will be working. 
Last year Dan and I had one of the harder years of our marriage. We went to A LOT of counseling to get things figured out, to learn to communicate again, to grieve the loss of a typical life- the type of life we had planned before Tuberous Sclerosis became part of our reality.  And I am just kinda fearful that things will get shaky and unstable again.  
I think even being aware of these fears is good.  Finding ways to safeguard against them, ways to plan a head and take some of the stress off of things when I can- simply by not waiting till the last minute to get things done.
 Planning ahead doesn’t come naturally to me. So here goes nothing!
But, seriously. 8 weeks already?  How is that possible? Please slow your roll baby girl. Things are going by too quickly!