Words aren't enough (a letter to a friend)

Friends of a dear friend of mine just lost their very young daughter to cancer. I have never met them, but my heart breaks for them. My friend asked me for any advice I had for her in terms of helping her friends. By no means do I want to be the "expert" on losing a child. I know for certain that all parents have very different grief experiences. But I do feel that I wanted to be helpful if I could. In fact, I feel a pretty big responsibility because if there's anything that I can do to make a broken-hearted parent's road a little easier (even if it's just by telling their friends to listen and be supportive), I want to do it.

So I wrote this incredibly long letter (and I've omitted the names since I feel that sharing their story is for them to do), but I am left wondering if I've forgotten something or if there's something different I should have said??

Dear Friend,

I’ve been thinking a lot about your friends.  My heart feels for them.  I know that their sweet girl is in a better place free from pain and sickness now; yet I know that we all want our children here with us, and it is heartbreaking to face our days without them right here.

Ultimately—just like everyone else—I don’t know what will be most comforting to them as they remember their sweet daughter and mourn her loss and get day to day without her now. It is so painful, I do know.  I don’t know the perfect way to comfort her so please know that everything I write is just based on my own life and thoughts.  But I can share that, for me, I had times when the only thing I wanted to do was write about Miles, then I wanted to read everything possible about grief and about other parents who had lost children, then I wanted to talk to a therapist, then I wanted to write a “life with loss” blog, then I wanted to find quotes and passages that I felt represented how I was feeling, then I wanted to have traditions to honor Miles’ memory, then I needed friends who would recognize that Miles is always part of who I am.  Mitch often wanted to listen but didn’t want to have to say much; other times, he wanted to just tell me about a particularly sad instance or something that reminded him of Miles. Perhaps they will find those things comforting at times as well; perhaps not. 

I do know that grief can be very isolating, and I am very thankful that they have you as friends to stand by them and to cherish and remember their sweet girl with them.  Life will always be different for them.  She will always be with them, and she’ll always be missing from their family; it’s a hard road. Losing her is the biggest loss (and the one that matters the most), but there are secondary losses that are really difficult as well.  The friends who we cherish most now are the ones who continue to remember Miles with us (even in simple ways) and to know that he is permanently part of who we are. 

One thing I’ll mention can be pretty sensitive but I’ll state in my own experience: I believe that God received Miles with open arms but did not want him to die. God loves us very much yet does not control every detail of life. A brief look around the world shows how much pain and heartbreak there is; I just can’t believe that all of this would be part of his plan. “Everything happens for a reason” is just the most ridiculous thing I can imagine now; I have come to terms with the fact that often there simply is not a reason for things. In short, it was not God’s plan for Miles to die. Any mention otherwise is upsetting and wrong to me. Others, however, find comfort in believing that all happenings including the death of a child are part of God’s plan; I do try to respect that we all have different views on this.  Obviously, you’ll have your own views on this as will your friends, but I just thought that it was worth mentioning because I know that faith is thankfully a big part of all of your lives.

I’m quite sure that “time heals all wounds” won’t be true for me at all, so I won’t say that things will ever be “better” for parents who lose children.  But your friends will find a “new normal,” they say.  She is forever a part of who they are. And I think that your friendship will help them as you’re there to listen, to be by their sides, and to remember her, too.

Love,

Alicia

P.S. As I mentioned on the phone,  please trust your instincts on how best to be a good friend to them now. You are the best, and you did (and continue to do) all of the right things with me. You are such a good listener, and this is the best gift you can give them.  A few last notes…

A few simple things we’ve done that are important to us:

-We started a basket for cards. All of the cards we’ve every received offering supporting or expressing condolences are in there. It’s good to see the basket of cards and be reminded of the people out there thinking of us and thinking of Miles. I imagine it being good to be able to read those cards again someday…though I haven’t actually done it.

-Write down specific memories. We’ll never forget. He’s our child. However, having the memories written is such a good thing to have on special days in the future. It’s important to me to be able to read my book about Miles on his birthday especially.

-We give a special Christmas gift in memory of Miles each year. It’s awful. I would much rather give him be here and to give him a real gift of course. But it’s the best we can do; honoring his memory is a way to make him part of our Christmas traditions. Last year we gave a donation to the Ronald McDonald House. This year we gave books to children at the hospital.

-Make traditions that make you as happy as possible in remembering his memory. We have angel food cake on his birthday. For me, it’s important that everyone feel ok about being happy remembering his birth and how happy we were to have him. Yes, there’s much sadness too because he should be here actually celebrating, but the day he joined our world was joyous.

-Doing what you can is enough. Though it went against every Southern bone in my body, I didn’t write thank you cards for gifts people gave in memory of Miles. That’s really ok. When I could I thanked them in person mostly because this was a good way to show them that it was good to talk to me about Miles. Other times, people wanted to “distract” me from my grief by doing some kind of nonsense. This was absurd. I said “no” plenty if it wasn’t going to be something that felt right to me; I had to teach myself not to feel guilty about that.

** 

So that was the letter. Ultimately I know that I can "fix" nothing for these parents. The one thing that they want--their daughter healthy and in their arms--cannot be. Still I want so much to share with my friend what can help her since she asked...what am I forgetting...what else needs to be said? There's so much that I want for the world to know about being knowledgeable and compassionate when interacting with parents who have lost children...and now I feel that this letter needs to address everything! Ridiculous and way too loaded, I know, but it's like now that I have the chance, it's like words aren't enough. 

On the extreme ends of the same spectrum

I have this crazy recurring dream of sorts (it happens when I'm awake not when I'm asleep...still it's an imagining that is far short of a "day dream" since it's more of a nightmare). Regardless of what I should call it, it is awful. I fear it.  And it's rather simple.  A friend or family member says, "Oh, Alicia, it's so good you're still the same old Alicia." No one has said this to me. But I fear it.

I am not the same.  Yet if you ask me exactly how I have changed, I fumble around for the specifics. So many ways. So many ways.

I've moved to the extremes, I believe. And--here's what's strange--it's the extremes on both ends of the same spectrum.
I am stronger and I am broken.
I am more compassionate and I am more judgmental.
I am much more open and I am much more private.
I stress much less and I worry much more.
I am much more thankful and I ask for much more in life (more than it can now give me).

And now the big question...why worry about whether other people "see" me now or not? Who cares, right? Well, that's tricky. We all want to be seen of course. (Sadly how deeply do we really get to know many of the people in our lives?) What's complicated is that all the people in my life want me to be happy again; they desperately want to believe that "I'm all better" and being "just the same" would prove that really. All of that bothers me because it feels like they are forgetting Miles and they aren't seeing me because they so blindly believe I'm "all better." But loss and grief are already so damn isolating. I feel that I've seen into this place that not many other people see. And if someone believes me to be the-same-old-me...well, then, I'm just all the more alone...in all my extreme-ness.

Books

I am totally predictable with books. I love a good memoir. Specifically, it seems, I love a good memoir that involves a mother and/or father (but always the mother) being a strong, independent, totally memorable, fairly outrageous, and rather crazy personality. I don't go out looking for that book description but it seems to be the one I like again and again. It started with Don't Let's Go to the Dogs tonight. Most recently it's The Glass Castle.

Honestly my "book memory" isn't that good. Mitch will recall details from a book for eternity. For me, it's more like 5 minutes...the perk is that I can reread books and love them as if they are new again. The thing that I've discovered as I reread these two books is that they both involve the loss of a baby (the sibling of the author in both cases), not as a focus of the book at all but rather as part of the life story of the authors. Perhaps it's just a coincidence, but it's got me thinking. Does this just confirm that the loss of a baby (and being part of "the club") is more common than we realize? Or that it becomes taboo to discuss the loss of a baby so it always seems rare? Or that the death of a baby influences a mother to a degree that she's more likely to be strong, independent, rather crazy, and fairly out-of-control? Or that it influences a family beyond measure and that the death of a sibling is not only part of their story but the (or at least one of the main) defining points of their lives?

I've come to no conclusions of course, but there it is...lots of wondering. 

Ages

My second child is now older than my first.

I still say, "There's your big brother Miles" as we look at his photo when she looks at each framed photo on our dresser. Miles will always be her big brother yet always a baby. It's just one of the seriously messed-up details that goes along with losing Miles. It's one of the things we deal with--because we have to (there is no other alternative really, is there?). Yes, their ages just crossed. I think of how old he should be, yet he'll always be four and a half months. I need that, I realize. Because all of my memories of him are real; all the thoughts of him from the day he was born until he was four and a half months are real. Imagining how he would be after that is just that--imagining.

Oh, Elliott looks so much like him; she is his four-and-a-half-month old sister...now daily getting further away from being his age and size. Will I ever have such a squeezable, kissable reminder of him? These days are precious. Because we have them with her. And because she reminds us of him.

At first glance

Though this photo was taken two months ago, I just came across it yesterday. The longer I looked at it, the more I laughed. But then I kept thinking about it all day and there's just something that's sticking with me that creates a feeling quite different than being amused.

As I've mentioned I wasn't a big fan of having my picture taken after Miles died--I didn't like that "proof" that he wasn't there--I didn't like freezing myself in that time, that place. So there aren't too many photos of Mitch and me until Elliott hit the scene in July. Now since I want her to have photos, that's that. Still, I realize, there's something really hard about seeing myself in a photo without Miles.

This photo was taken when we were in St. Michaels for my sister's wedding. It was Elliott's first venture out to a restaurant (ok, ok, so she had already been to Chickfila twice but come on). Honestly, Mitch and I were terrified of taking her, well, essentially out in public at all because she was such a fussy baby at the time. I was still feeding on demand, which at the time meant that I was feeding her about every hour because I never knew if she was hungry or not...so she was never completely full nor completely thrilled. In short, we were really happy-ish and pretty much at our wits end. ANYWAY, we were trying to enjoy our week off and decided to be super-adventurous and try to go out for lunch with our families. This photo makes me laugh because--for how our lives had been turned upside down by her--Elliott looks so tiny and harmless. Then it makes me laugh even harder because Mitch and I both look like we are in the newborn-trenches. Mitch is in a little bit of a daze, and I can promise you that his arm is under the table because he was gently rocking Elliott's car seat the entire lunch to keep her happy. And then me...I mean seriously. My arm brace was always on because my arms were practically broken from holding Elliott so much. And I definitely had not washed my hair in days. Then there's the fact that I was wearing the green moby wrap practically as an accessory just in fear that I would have to quickly plop her in there and leave the restaurant to walk for as long as it took for her to stop screaming. Exhausting. Hilarious.

Yet it's not the whole story. I think that's what kept sticking with me. Things aren't always as they seem, don't we all know that? Maybe we look normal, I realize. Yes, I think that's what was sticking with me. We look kind of normal, but our new normal is much more than is there on the surface...much more than what can be seen at first glance. And so I see the moment yet I see our whole story when I look at a photo like this.

I am a mother.

I am a mother.
I am a mother, and when I think of being a mother, I think of both of my children--Miles and Elliott.
And I say this in a factual way, not a sad, guilty, or sentimental way: For Miles, I felt like I was being the best mother I could possibly be--and it wasn't enough. For Elliott, I feel like I am doing my best yet never have that feeling of being the best mother I could possibly be--yet it's enough. And all of that leaves me feeling like there's no sense in the world. And I feel grateful and sad.
I fill my days with Elliott now. Smiling at her smile, laughing at her laugh, singing to her in the kitchen, holding my breath during nap time that she'll keep sleeping longer than 45 minutes this time. And I carry her around the apartment, catching glimpses of my Miles in our photographs. I think of him and smile. I think of him and the lump in my throat grows as I wish he were here as well. And now I see Elliott look at his photograph, too. And I think, how long until she knows, too, what we're missing?

Thoughts

"Could this really be my life?"
"Could I really have my daughter here in my arms and my son gone from me?"
Reality hits hard.

It starts with a small thought...
Elliott is three and a half months old; we're having so much fun with her as she "matures." And this is the age, I know, when Miles was at his best, too. He was off the ventilator; it was our best time with him.

And then more thoughts just rumble through my mind...picking up speed...
We've taken Elliott to Charleston, Maryland, Texas, Arizona, the Grand Canyon. And home for crying out loud. We've gone through so many things with her...breastfeeding and then adding in formula. Listening to her learn to make sounds, laugh. Holding her while she sleeps and then sleep training. Walking with her in the Moby wrap for hours and hours. We've done so much. And here's the thing. With Miles at this point, we were still in the hospital. It's shocking. All this time and we were still in the hospital. It's incredible what we did, withstood, lived, memorized--four and a half months. All that matters is that's when we had Miles. Those were our four and a half months of having our boy.

And the reality is that we had our Miles for four and a half months and now he's gone forever--I know it to be true but can hardly believe it. Hardly stand it.
And the reality is that our Elliott is three and a half months old. Creeping up on Miles' four and a half months. Soon to be older than Miles got to be.