Tuesday, June 24, 2014

For today.....

At this moment, I’m quietly rejoicing. No one noticed the load was lighter on my shoulders as we left the clinic today, nothing looked very different, except for today.....we have been given a bit of a reprieve. When the sleep clinic doctor reviewed Peter’s sleep study on Cpap, she feels he is stable at this point. For right now...today....one doctor is saying that Peter doesn’t need jaw distraction.  We know he needs it at some point, but that point just got moved down the line a bit more....

Like swimmers who have well developed shoulders sculpted through hours of practice.....our “taking it one day at a time” muscle gets a workout. a rough, tough, workout that is exhausting and difficult at times. For someone like me who wants to peek ahead at what’s coming down that there pike, well, it has been replaced, (slowly)
with 
“For today, all is good.” 
Even a messy office shelf will not get me down! 

Peter is healing nicely from his surgery. His airway, while tricky, is stable. He is off his pain meds less than a week after a big surgery. He is smiling and almost back to his perky self. 
For these things, I am eternally grateful. Tomorrow will take care of itself, with the Grace necessary for the difficulties it may bring..... I’ll snatch it all up when the time comes, but for TODAY....we breathe easier....we offer up thanksgiving.....our joy is not dampened by the “what if’s” of tomorrow.

God is good, all of the time. 

Tuesday, June 17, 2014

So here we go.....number 17.....

Cue Rocky music. My sweet Pete is going in for yet another surgery tomorrow. This will make 17 surgeries. He wears his scars proudly, like a warrior out to conquer. I’m not sure where he got all of this competitive stuff, ahem....


See how he claimed the box? I believe he’s almost obstructing his trach with the cheek action going on, but hey, who’s worried about a little thing like breathing when you got a box to scale?

Through the years, I’ve seen my kids through a lot of surgeries, a lot of physical pain, a lot of hard muck. There is much to learn with having special needs kids.....the medical stuff, the diagnosis specific information...the stand up and advocate for your child stuff.


But the most important lesson of all is surrender...we are talking the lay Isaac on the slab and not knowing if the ram is there or not to take his place kind of surrender. 

Can I admit that I struggle mightily with that? Many would think from looking at us, we have this all locked down. We are well seasoned athletes in this arena. (Do NOT look at my upper arms!)  Repetitive actions often render a little “wisdom,” like remembering to wear comfortable, old clothes on surgery day, or not forgetting my phone charger, or bringing my own bottled water because it’s so expensive at the hospital, and getting Lily’s tiny blankie and Peter’s iPod and pillow for the ride home, and whatever I do, pack the tiny crochet hook to pick up dropped stitches on my knitting needles!!

We can pack pretty efficiently for surgeries after the dozens we have endured over the years.

But surrender? It’s the unpacking that gets me. I start anew with every single surgery, every single kid, every single time. Surrender is a verb for a reason--it’s a very active, wrestle-demons-of-anxiety-to-the-ground verb.  Like breathing itself, it is necessary to survive and thrive in this world of special. I have to actively choose to surrender.....and believe me, that’s often as exhausting as running a 5K.

 I should say I PRESUME it is as exhausting as a 5K run since I’ve not actually run a consecutive amount of measurable distance in my life...other than the time I heard Gabe screaming bloody murder and I was eight months pregnant, running to him as he laid crumpled in the gravel with serious road rash on his face and chipped teeth...that counts as some kind of sprint event, right? 

Special needs parenting is sometimes having the author of lies whisper in my ear, “Can you really trust Him?” I often whimper back, tired and rattled by yet another difficult scene, ”Yes, I can trust Him, so beat it.” Other times, strengthened by recent victories and my own doubting Thomas moments of seeing and touching His wounds, I stay calm and stick my fingers in my ears. It’s better not to feed the beast. 

My faith is the size of a mustard seed, held in a trembling, outstetched hand. But my eyes have been conditioned by this life of mountain climbing to always be searching and looking for the One who is Love, to lock my gaze and my resolve on Him.  Surrender: verb, an act of my very imperfect will....over and over and over. Sounds like love, eh?



Please pray for this amazing warrior boy. I know it’s the faithful prayers of so many of you that prop us up for the mountain climbing done in surgery waiting rooms and floors of recovery. 




Saturday, April 12, 2014

Dear New Mama of a Special Needs Baby....

First off....congratulations! People don’t often say that at first, do they? When they hear you’ve just had a child who needs lots of extra care, they clam up, stumble on their words and, not knowing what to say, they don’t say anything. So...I’m saying it.... 
Congratulations!!



This baby is a precious little person who will challenge the world to see what it’s made of.....what you are made of....Right now you might feel like it’s jelly that fills your insides, all quaking and weak. 

That’s ok. 


You will see, as your baby starts to fight and fight to do those things that come easily to other babies, like breathing...and eating...
that the fighter in you will start to emerge. 


“How can I give any less than this tiny sprite does with every breath?” 




You will surprise yourself. 

Previously unrecognized reserves well up from a deep river of Grace, running through our lives and only recognized when we figure out just how small and fragile life really is...
We need to be filled by some One other than ourselves, and fill He does. 



“How can I possibly get through this?"
 will be answered by tiny fingers, grasping yours...tiny lashes flickering, reminding of the unbreakable bond that says, “Indeed, this is MY baby...and WE will get through by walking straight down the middle of this road."

Look at your baby....what exquisite handiwork. Put your baby before the label, but do your research as well....it’s a hard balance to strike, and one you will constantly be reassessing. 



Know that feeling intense grief, intense gratitude, and intense rage can all steamroll through in a flash. You won’t be the first mama to walk into a scrapbook store, a baby clothes shop or an infant food aisle and start sobbing when the reality of how your life is so different sweeps over you in tsunami size tides. Ride the waves, Friend. They always move back towards the shore, where you can  anchor yourself to the new reality of your life....and start to be ok. It will be ok. 

 You now have permission to eat as much dark chocolate as you want...and forget things like people’s names you’ve known for years, and your bank card’s PIN number when in line at Costco’s...and scream out loud if one more person sends you “Welcome to Holland” because, let’s get real.....this was never about a trip.


 This is about Sacred Work on Sacred Ground. It’s about epic battles in which you showed up carrying a pretty pink packed bag and came home with a gray suction machine and a baby who’s life depends on you keeping her airway open.  

 It’s about more tears than you ever, ever thought could fall from your cheeks.....but even more about a staggering, humbling amount of Grace that saves us all and props you up to carry on another day. 

It’s fierce and it’s beautiful and it’s called special for a reason.  

This life wears the sharp edges off of selfishness and self centeredness like nothing else. You will be a much better person for being this baby’s mama.


This side of special can be so hard. But Love is bigger than hard. 



 Love your baby.....and know you are not alone. 

Wednesday, April 2, 2014

Yarn Along...Finally!

 Tell me this picture doesn’t just get you....





Oh my goodness....I have finally gotten my pics up of the sweater. I have said before I wasn’t too hip on the yarn I used...totally fuzzed out even before I had finished the project. While the actual pattern wasn’t too bad, the yarn was disappointing. BUT...Lily LOVES this sweater, she wears it all of the time, so I’m not too upset. I really would prefer to knit the button band along with the pattern, instead of picking up the stitches later. I had a hard time with this puckering up, which was probably more my fault in hastily picking up stitches and not so much the pattern. 


You notice what sweater she threw on for the very first day of Spring like weather in the tundra?? Lily is extremely picky about her clothes, tags, etc...so this yarn had to be pretty soft, and in that department, it does not disappoint.  Here are my Ravelry notes. 


As far as reading...I’m making my way through, again, For The Children’s Sake by Susan Schaeffer Macauley. This is a MUST READ for homeschooling moms. It was instrumental in shaping my views on education. When I first started out homeschooling nearly 16 years ago, so many of us read these kinds of books and had great discussions face to face. In the age of FB and texting, it seems like something is lost when we don’t read and discuss how and why we homeschool. Susan’s book focuses on the Charlotte Mason approach to education....rich in good literature, no “twaddle” for books, and short lessons. She called it setting out a “feast” for children. 

Go check out more of the Yarn Along friends at Ginny’s place:

Sunday, March 16, 2014

Spring, right??

So, I did a little pretty cut and paste to spruce up the blog, trying to trick myself into believing that Spring really is just around the corner.....but then I picked up my pictures from Costco’s and saw these....




Oh well, I’m sure the next thing will be the big melt, which means the big mud bog......which really I should take advantage of and look for rain boots for both Lily and me. We need some in bright, cheery colors. Any suggestions?

Wednesday, January 22, 2014

Our Story....a Prolife Story

So, I’m going to talk a bit about my family of origin.

Growing up, I never had a large family of cousins, reunions, or get togethers. One reason for that is my mom was adopted and had one sibling from her adoptive family. My father is an only child and both of his parents were out of the picture before I had grown out of toddlerhood. So our’s was not a family of big Christmas’s, or extended, cohesive family. I was curious about my mom’s side, given that we didn’t know anything about her biological family, but as most kids, I just accepted what the reality was and moved on.

My mom did end up finding her biological family after I had started having children of my own. A half sister of her’s actually lived 10 minutes from my house! It was a happy reunion, except my mom found out both of her biological parents had died several years before her finding the family. What struck me, though, in finding out who her parents were, their personalities, and the facts surrounding my mom’s pregnancy and birth, that on the surface, this baby, my mom, looked like what others would call “a mistake” 

 My maternal grandmother was a broken woman as was my grandfather. My grandmother had many children by many different men, including my own mother. She adopted out the majority of her THIRTEEN children, staying in touch only with two or three, who were raised by relatives.

This isn’t the joyful news you see on TV with a biological mom who was ecstatic to see her long lost child. While my mom’s siblings were, for the most part, very welcoming and so sweet to my mom, it was a loss to her that she didn’t meet her mother. It was an additional loss to feel like her mom didn’t give her up in a heroic act of love, but rather as a problem to be given away. 

Many could say, “Well, if only abortion was legal when she was having babies, and she wouldn’t have been burdened by having all of those kids.” Humm.....well where would that have left us? I’m so glad that even in all of her brokenness, her struggles, that she gave birth to my mom. We don’t know what kind of sorrow and pain would make her act in the way that she did, having several children that she never intended to keep. God has made good on bringing amazing stuff out of the rubble. He is faithful, even when life is ugly, scary and unfair. My mom wasn’t an unwanted child...God already had big plans for her and her heritage.



Our life hasn’t been easy either. With medically fragile kids, we have stared down some scary times of our own. But I would do it all over again. When we got the ultrasound of Lily at 18 weeks with her unusually small jaw, we knew that the road would be difficult. The sweet doctor that came into the ultrasound room to tell us the news, (which I could already see on the screen) told us our tiny girl would be in for a tough time. He then asked if he could pray with us. We were at a Catholic hospital. He prayed that God would be give us all of the graces necessary to care for this precious little girl, that we would be brave and take courage, because in the end, it was God supplying all of our strength.


Through lots of tears....I was glad for the chance to carry this little person. In the next few years, after I had Lily, I would have people ask if I “knew” she was going to have issues. There were those who asked out of concern, like, “Wow, did you have any time to prepare yourself?”
There were others who asked with an edge to their voice....

Well, this smile would cut through any edge. Yes, we did know, I tell people, and I make sure they know my kids have never had to prove their genetic worth to us.


So....on this anniversary of Roe V Wade, I thank God for Life. I thank God that my maternal grandmother had her daughter nearly 68 years ago.....that my mom had me over 47 years ago...and that we have had seven babies in our own family. Little Benjamin and Christian stand before the Face of God. I’m sure we will see our beloved babies one day. In the mean time, they are interceding for us!



I’m so glad because of one person’s very broken, imperfect “Yes” we are here.

Wednesday, January 15, 2014

Yarn Along.....

Okay, you know when you see yarn online and everyone is talking about it? And everyone loves, loves, loves it? I bought some of that kind of yarn.....popular girl yarn....and I am not impressed. At all. I seriously could have used a Lion brand wool blend and it would have been better.

I contacted the company and expressed my deep disappointment in this yarn, as I continued to knit my daughter’s sweater. They replied they were sorry, and here is 10% off for my next purchase. Hummm....next purchase? The yarn is very soft but I’m sad it already looks pretty well worn. Hopefully it was just a bad run of that particular colorway or something, because I have heard nothing but good stuff.



So, I am going to finish, and hope maybe with a little heat and blocking that the fuzzy will calm down and this will look much better. The pattern is “Cricket” as I have mentioned previously. Here is the link to my Ravelry page for the cardigan.

http://www.ravelry.com/projects/malikestoknit/cricket

The color is nice and I think Lily really likes it thus far....check out her preview with double points sticking out all over. She was careful putting that tiny arm in....

I still need to finish that other sleeve, and pick up a gazillion stitches for the neck and button band. Hopefully by next week it will be finished!



My reading time has been a bit split. I have found I LOVE to read while on the treadmill at the Y. I do get off said treadmill looking a tiny bit inebriated. It makes me somewhat dizzy to walk 30 mins rather quickly, while reading, and then to stop and step down. I feel like I weave over to the next machine grabbing for the wall. On my Kindle, (that little thing is amazing, great Christmas present from my sweet husband), I am reading “The Book Thief.” Wow. It is good, not particularly uplifting, but I like the writing style. I hear there is a movie out, I’ll probably watch it when I get done with the book.

I’m also trying to finish a few other book, one on the spirituality of Flannery O’Connor and I still need to read the rest of “The End of the Present World.”

So much yarn, so many books...so little time.

Go check out Ginny’s Yarn Along!