Not that you do.

Just in case any one erred in judgment and thought we have it all together, I would like to take a moment and say that pretty IG photos and FB posts do not a clear picture make.

While yes, my life could be worse (you can say that to anyone - of course life can always get worse), we are absolutely and always grateful for what we live each day, but sometimes days with a multiply challenged child are tough and reality bites hard.

Cue the vomit.

And Liam's new horrible habit of locking his jaw and closing his airway. Gagging. Gasping for breath. Then doing it again 597 times before the day is done.

Now picture him doing that in the middle of the night.

Cue the picture of the sweet little family all with children your own kids ages...if they had lived. Cue the happy-go-lucky faces of said children who can pose and smile on cue, reminding you that your kid can't.

Some days, life is asking you to take a punch in the gut - again. That doesn't mean I hate it. On the contrary, I love my life and the priviledge it is to be the mom. But the daily grind of a challenged kiddo can be taxing and on those days I think I am grateful for the moments where I look like I have it all together. ;) I can pretend, right?

Not my way.

I've been asked before if I have ever been angry at God for taking two of my children from me.  I can honestly answer that with a no.  I have never been angry at God for it. At least I don't think I have been. Have I ever questioned His reasons, doubted what the purpose was, asked how He could think of doing such a thing, spun circles in confusion wondering how I was supposed to deal with the fallout?  I have absolutely asked those questions. For years I have asked those questions and more. But I have never been angry at God for taking them.

I have heard our pastor talk about getting your frustrations out with God. He says it's ok to shout and rail against God because he knows what you are thinking anyway. He knows how you feel so it's ok to vent to him. He already knows when you are mad at him. And in our pastors wise opinion it's ok to shout it out at him because when you are already feeling that way, you might as well say it out loud and get it over with so you can move on.

I've never really been angry though. I have thought about this over the years and wondered if it was just something I didn't have in me. Was I afraid to be mad at God? Was I afraid of his reaction? Was I afraid I wasn't allowed to be angry?

I don't think any of those things are it. I just think I could never get mad at God when I didn't have any thing to do with bringing those babies to creation. I didn't create them, God did. He gave them to me and it was his right to take them away. It's sounds facetious but it's true. He didn't even had to give me the priveledge of being pregnant.  I actually feel lucky that I have been so blessed with being able to get pregnant easily. Some people would unwittingly take that for granted but I personally know women who don't get that privilege and I am grateful to be able to have that experience, even though they ended in such pain and heartache. I am grateful that I know one day I will see my sweet children again.

Do I wish things were different and that I could have my missing babies with me? Absolutely, I do. And do I wish I had never felt the pain of burying my own children? Without a doubt it's the hardest thing I've ever done. No matter how old they are, a parent always wants their children to outlive them. Do I get frustrated with the journey I've been on and continue down? Of course I do. But I don't ever get angry at God for it. My sweet children were all created with value, purpose, and a divine soul. No matter how short their earthly existence, they were here for a reason and they continue to live on now with God. Getting angry at him for taking them, when He created them and whom I will eventually see again, just doesn't seem right to me.

I'm not speaking about this expecting any one else to feel like me. Everyone feels and reacts differently to situations and being angry is a normal human emotion. If you are angry at God over something, there's no shame or harm in that. Let it all out. Tell God what you're thinking. He knows it anyway and you can breath a bit easier knowing you got everything off your chest. Trust me...God can take it. ;)

Honor

It's not that I have ever forgotten my children who are being raised by Jesus, it's that visiting the cemetery is painful and even though it has gotten easier to go, it's still hard. I'm a wimp.

So, thank you to whomever you are that has visited in my stead.

I arrived yesterday ashamed to see the flowers I had put a year ago worn out and faded with time. Ashamed that I hadn't been back to take care of the dirt and grass growing in between the stones.
Ashamed that dead grass was covering up parts of the stones.

But how honored I was to see that someone had put an angel figurine on Kyle Ann's marker (we didn't get the option to put a desig/figure on her marker but did with Brady...Brady's has two angels attached in honor of both of the boys.). And someone had put a planter of flowers between them both. Thank you for remembering my children. I promise I haven't forgotten them. Even though visiting there it looked like I had.

Scars

We all have scars. Some we carry quite obviously, from an accident, an injury. Some are internal and not so apparent. Traces of them visible but not noticed without attention being called. Some blend in so well no one would ever know it was there.

Liam has scars.

He has a large scar running along the bottom of his left scapula. The wound from a surgery to correct a duct that didn't know to close at 23 weeks gestation in order for Liam to get enough oxygen (even his duct knew it was way too soon).

He also has small scars. Lots of tiny pin pricks all over his body. One from his PICC line in his left arm, his arterial line in his right, little white spots on his legs, hands, and feet from the IV's. Pricks on his heels when his art line went out. I can see every one. They aren't noticeable to anyone but me. 

He also has internal scars. Ones I can't see, but  I know are there. Scars with a lasting affect of trouble. He has a large portion of his cerebellum missing. He has a thin corpus collosum. He has had laser beams scar his retinas in order to prevent losing them due to his prematurity. He has scars of trouble from sensory issues involving his mouth and his tummy.

I have a lot of scars as well. Most of them no one can see. Wounds grevious yet assuaged with the passage of time.  Only obvious to me.

But, one scar I wished was on the outside.

One scar I wanted to never fade..

I wanted a permanent marker for this scar. An identifier.

But in fear of the passage of time allowing my wounds to fade from my existence, I wanted to make a mark that would never fade, that would always remind me. I wanted a tangible one. One I could touch and be transported. An indellible reminder. One that would never disappear.

   God said to Zion: "Behold, I have engraved you on the palms of my hands." Isiah 49:16 

I wanted my missing children to be engraved upon my hands as well. And so I thought about what I would have that scar illustrate if I did. What I would have it represent to me. What it would mean to be there and to see everyday. But I didn't just want my missing children to be honored, I wanted to signify all of them and each ones importance to me.

So, I decided for it to simply say:

"Mom of six"
  in Irish Gaelic.

They have now in their own way been engraved upon my wrist.  An outward symbol of an internal scar, one that can never be forgotten.

While being a Christian and receiving a tattoo can be questioned by some and while impressions, stigma's and misrepresentations can occur because of having one, it illustrates for me the reality of engraving my children upon my wrists as the Lord did with Zion. While they are not here with me physically, they are here with me in the Lord's promise that they are not forgotten.

Joy comes in the mourning

I have a friend whose son died last month after a seizure. Only 12 days before he would have turned 20 years old. So young. It was unexpected, a total, complete surprise. It was nothing they could have prepared for.

My friend lives in my old hometown and I had been praying that I would get a chance to see her when we went back there recently. I just wanted to give her a hug, for me or for her, I don't know. I just wanted to tell her in person how sorry I was.

I had been standing in the lobby of our old church talking with friends, waiting for the right moment to go into the church as it had already begun, when she walked out of the bathroom right in front of me. I looked at her, she looked at me and then we just hugged. We quietly cried in each others embrace and just let the tears flow. No words were needed. Just two mothers sharing tears of sadness over our losses, over each others losses. Two mothers whose arms ache to hug the ones we miss. Two mothers joined by a situation different, yet the same; we've lost a child too soon. She has memories to fall back on and miss the son she shared them with. I have no memories of times spent and miss the opportunities I should have had.

My friend had a large bundle of tissues at the ready in her purse. We dabbed at our tears and she asked me when it gets better.

I don't know.

I told her it does get easier.

It gets easier, but it never gets 'better'. You are never better than you were before. The loss of your child is forever with you. The slightest thought at the most random times can ignite a tidal wave of emotions that spill the tears when you least expect it. Just when you think you've shed your last tear, that you have gained the strength to move on without being emotional over the smallest thing, you are reminded through someone else's loss and yours become fresh and new again.

But we do have joy in these times.

Through our faith in Christ.

We know that God already knew how things were to be.

Psalm 139:16 All the days ordained for me were written in your book before one of them came to be.

I don't know how people who have no hope in Christ get through it. What a dismal, depressing thought that the only moments we ever have are here on earth and once you die it's all over. There is no point, no future, no hope without Christ.

It does make our sorrow easier to know that we will see them again. And while we have to learn to live this earthly life without them, we can have peace knowing our loss is heaven's gain and someday we will see them again.

How good was God to give me the opportunity I had asked for. I could have easily missed seeing her but He brought us face to face. So I could give her a hug.

Unnoticed

I feel like a horrible mother. March 3rd came and went with not so much as a fleeting wisp of thought concerning my daughter.

Kyle Ann's birthday was last week and I didn't even notice the date. Somehow it just hit me this morning that I had missed it. I had completely forgot.

She would be four now. She would be running around wearing princess dresses and high heeled shoes that are too big for her little feet. She'd have bows in her hair long, straight brown hair and she'd giggle at the affections of her older siblings.  Or would she be running around in cowboy boots fighting off the bad guys with a light saber? Would she be spunky and outgoing like Aidan or would she have been shy and soft spoken like Rylie? Would she have idolized her only big brother?

I don't know. And it hurts to not have been given that opportunity.  I always wonder what's harder, losing a child you had memories with or one that you didn't get to make any with at all.

But I do take great solace in knowing that I will see her again someday.

If you haven't heard of the books Heaven is for Real or The Boy Who Came Back From Heaven, I highly encourage you to read them. They are very quick reads but are amazing reflections on what has been told to us thousands of years ago in the Bible.

One of the points that really stood out to me was in Heaven is for Real. The little boy in this story travels to heaven when he was very sick and months later mentions a small bit of information about his journey as he passes by the hospital. When details finally fully emerge, the family realizes that their son knew things that were impossible for him to know because he was under heavy sedation at the time. And he tells the mom he got to meet his sister while he was there during his surgery. "What sister?" the moms asks him. "The one who died in your tummy." he says.  This little boy had never been told about his mother's miscarriage. Ever. He had no earthly knowledge of it, but he came back from heaven having met her.

There are so many details in these two stories that are just chilling. Rare present day glimpses of God allowing heaven to be seen. I was reminded that I will see my Kyle Ann and Brady again. And that they will know me and the rest of their family when we get there.

I'm sorry I forgot your birthday sweet girl. I miss you Kyle Ann. Some day we'll get to celebrate the day together.