Wednesday, April 15, 2015

Bosom Friends

I ran into an old friend yesterday.  By "friend" I mean someone that I love dearly, whom I feel a deep and instant bond with.  She and I have never gone shopping or sat down over a cup of coffee or even talked on the phone. But we've shared tears of sorrow and anguish.  We've rejoiced together in little baby steps of healing.  After years of not seeing one another, our hearts still understand.

Chris and I were hospital neighbors.  In the long, painful days of devastating illness.  Moise and her son, Jack, were next door to each other in the Pediatric ICU.  At approximately the same age, our boys teetered in that place that seemed to be somewhere between life and death. Hour upon hour we sat carressing our boy's prone forms amongst the array of tubes, needles and machines. Beeping alarms and swooshing ventilators became our background music. We knew what every sound meant and learned to know our boys' health status by the blazing numbers blinking from the machines.  Moise struggled for every breath of air.  Jack struggled against cruel seizures that twisted and contracted his body.  Both of them were in an exhausting pattern of one step forward and two steps back. We both had really bad days and not so bad days.  We both cried oceans of tears, for our sons and for each other.  We both were stripped, bare and raw, of everything but the sanctity of life.

Each of our rooms were surrounded by three walls.  The front of both rooms was made up of a large sliding door of windows with a curtain that could be pulled for privacy.  Nurses sat right outside our rooms, watching every beep, every breath.  There was a horizontal window, approximately 4 ft by 2 ft, in the wall that separated Moise's ICU room from Jack's. By that window, we knew when things were good or bad and when there was a need for privacy.  Most of all, through that window, we observed the unshakeable love, diligence and perseverance of motherhood.

Jack, like Moise, continues to struggle developmentally and medically.  Although their challenges are dramatically different, life has not been fair to either of them.

When I saw my friend, my heart embraced her.  I could see, in her eyes, the weariness and worry of years of caring for a fragile son.  I asked if she and her husband ever have help with Jack.  But I already knew the answer. He's not so little anymore and that makes finding help so much harder.   I saw in her the fatigue, the love, the sadness, the joy, the strength, the loneliness.  It's all there, etched into her soul. She didn't need to speak it. I saw it. I know it. I get it.  In Anne of Green Gables fashion, she's like a bosom friend.

As we parted, my heart was grateful. Grateful that our paths crossed once again.  Grateful to know her.  Grateful for the strength that emanated from her.

 Some of the most beautiful people that I know, I know because of the challenges of life.  

God is good, all the time.

Tuesday, April 14, 2015

Hard Things

I've recently been talking to some of my grown children about hard things.

 Grown Children?  That feels weird to type and looks even weirder to read.  I'm not quite sure that I'm even grown yet. How can my children be grown?  But I had a birthday last week.  I suppose that 45 means I've grown up somewhere along the way.  And my kids?  Well, 22 is definitely grown too.  But they'll always be my babies, all seven of them.   Regardless of how old their age says they are, regardless of whether or not they are here on this earth with me, they're my babies.  I'm sticking to that. 

I hate the thought of my babies ever having to do hard things.  I wish that I could make all of their world's be sunshiney, happy,  love.......forever.  I wish that for a little moment, but then when I think about it, I don't really wish that at all.

Hard things make us better.  I believe that with every ounce of my being.  Hard things are... well....HARD.  They turn our hearts inside out and make us weak and tired.  They also make us strong and resilient and when our hearts are inside out, we can see what's going on in them a little bit more clearly.   Hard things help us sift through the life stuff and show us what's really important and what's not.  When we do hard things we learn that beautiful looks very different than we thought it did.

And God?  Sometimes we can't see him when we're in the very deep mire of hard. But when we come out of it, when we are on the other side, we look back and we realize that he was sort of in our blindspot. Right there, close beside us, but the hard stuff was blocking our view of him.  That doesn't mean he wasn't there.  It only means we couldn't see him.

But if you suffer for doing good and you endure it,
 this is commendable before God.
To this you were called, because Christ suffered for you,
leaving an example that you should follow in his steps.
 1 Peter 2:20-21
Around Easter, I was listening to a radio minister. David Jeremiah or Chip Ingram maybe? I can't remember who,  but after reading this verse from 1 Peter, they said, "we are called to suffer."  I've
read this verse over and over and am committing it to memory. 

"Called to suffer" for doing good, because that's what Christ did and we are to follow his example.

All those hard things that we have to go through: they're not just some cruel twist of fate.  They're not trials that God hands out just because he feels like it.  They are a vital part of our growing and becoming more like him. 

Sometimes it looks very much like some people have alot more hard things than others.  Maybe they do or maybe we just don't know about their hard things.  It really doesn't matter.  There is danger in comparing ourselves or our lives to others.  We are not called to be like others, we are called to be like Christ.  Christ had many, many hard things.

Are you in the midst of hard? If so, God's in it.  He's in the hard things and He wants you to be like his Son.

Here's a quick photo peek at life lately

Jamee running the 1500m at the EIU Big Blue Track and Field Invite.
She has three more meets left in her track career.

Easter Morning with lots of sweetness

Moise has known so very much hard lately.  He teaches me every single day. 

4 of my children, all grown up but still my babies.
I desperately wish I could put add a new picture of Laynee Grace in her Easter dress.  But I can't, so I'll leave you with a flower from her garden instead.  A poor substitute for a picture of our little girl, but still beautiful and most importantly, the promise of life. 

God is good, all the time.

Thursday, April 2, 2015

We Chose Love

It's April and I don't know what happened to March.

March was hard.

Moise is struggling.  He's angry at the injustice of life and I can't say that I blame him.  He's grown so much. He's busting out of his clothes and shoes and AFOs (leg braces).  Like everything else, he seems to have outgrown his medications, which wreaks havoc with his emotions and behaviors.  Add in pubescent mood swings to all of the above and we have a very frustrated young man.  The only way he knows how to respond is through angry, aggressive outbursts.  While we understand and empathize deeply with his frustration, that understanding doesn't make such outbursts easier to deal with.

I feel a strong need to tread softly around this subject of Moise's emotions because, first and foremost, Moise deserves to have his dignity preserved.  He has suffered monumental losses, losses that would make anyone angry.  But, while most would use words to express themselves, we must remember that those words are locked away inside of him.  Moise is not "bad." He simply doesn't have the means for socially acceptable expression.

 I also tiptoe around the subject because of the fact that Moise is my son by way of adoption.

 Yes!!  You read that correctly.   I feel a need to guard my words very carefully because Moise is adopted.

To some this will  come as a shock, others will know exactly what I am talking about when I say that there are  many who believe that since we chose to adopt, we chose hardship and that's nobody's fault but our own.  Those people are of the "you-made-your-bed-now-lie-in-it" mentality. Those people will view anything I say about the struggles Moise faces as complaining.  They will say, "if you're going to adopt kids like that then you'd better be able to deal with it."  Their attitudes will convey that we should not have human emotions, that we should never feel weary or brokenhearted or lost because we "chose" this.  If you think this way, then you know who you are, and I would ask that you quietly leave my blog. I write because I find healing through writing.  I write because many parents of children with disablities draw courage and comfort from reading each other's blogs.  I try hard to offer light, even when things seem dark.... hope, when things feel show that joy and sorrow can dwell together. But the truth is, I am human and sometimes it's hard to find the light, the hope, the joy.

It's true, we did make a choice.  Three times in fact.  We chose to love Moise and Jalayne and Kruz, until death do us part and long after that.  We chose to adopt them and be their family, through the very good times and the really bad times. We knew when we made those choices that we were signing up for hard things, that life was not going to be easy, that we would make tremendous sacrifices.  We knew that they wouldn't stay babies forever, that one day they would be teenagers and still disabled. We knew all this.  And yes, we chose to adopt knowing all these things

We chose to love children with disabilities.

But we did not choose for children to have disabilities.

We chose to adopt Moise because we loved him, but we have never loved his disabilities. We did not choose cerebral palsy for him.  We did not choose for him to be deaf.  We fought, with everything in us, against blindness.  Truth is, I hate cerebral palsy and the way it contracts my son's muscles.  I despise the wheelchair and the cochlear implant.  I would give everything I own to, just one time, hear my son's voice speak a word.  I loathe all of the things that Moise endures but I love, so desperately,  the little boy that suffers for them.

We certainly did not love Jacobsen Syndrome or Trisomy 9.  We had never even heard of it.  The rarity and lack of knowledge of Kruz's genetic anomaly was the very thing that made it difficult to find his forever family.  We did not fall in love with his chromosomes, we fell in love with a precious little boy with black curls and dark eyes. Today, after two and a half years of  loving Kruz, we still do not love Jacoobsen Syndrome.  We never will.  Never.  The path ahead of Kruz is a stormy one, we have known that since before we even laid eyes on him.  If we could have taken the child without the disabilities, we would have.  But they came as an all in one deal.  To say "no" to the disablity was to say "no" to the child.

While it is true that, somewhere along the path of Jalayne's life, we fell in love with the simplicity of Down Syndrome, we did not choose it for her.  We loved Laynee, not because she had an extra 21st chromosome, but because for some reason that we cannot explain, God wrote her name upon our hearts.

No one chooses disablity for their child and those of us who adopt are not the exception.   For those of you who say "you didn't have to adopt them."  You are correct.  You are absolutely correct.  We didn't have to adopt them.  We didn't have to love them.  But "once our eyes are opened we cannot pretend we do not know what to do. God, who weighs our hearts and keeps our souls, knows we know and holds us responsible to act." Proverbs 24:12

We made a choice.

We chose to love our matter what.

God is good, all the time.