The Edge of Despair

As I sat in the NICU for the 3rd week with my baby who I thought would be home quickly after birth, I had the pleasure of listening to the family next door being discharged. I have no idea what their baby was “in for” and I have no idea who these people were other than surmising from their conversations that they were likely in their early 30’s with some amount of professional education. I did however know, without a doubt, know that this was their first baby.

I listened all afternoon as they asked every question under the sun about the care of their baby. Good grief. “Do the straps on the car seat look ok?, “How do we bathe her?”, “So I’m feeding her every 3 hours, IS THAT ENOUGH?”, “How do I know when she is full?”, “Can you go through bathing her once more?”, “WILL THE CAT ACCEPT HER?!”. Just a tiny TINY glimpse of the questions asked that day with the exception of the cat. For closure, I am all but positive the cat will never accept that baby. No fault to the baby of course but for the poor assignment of being born to these helicopter bafoons.

I was annoyed and perplexed why you would choose to have a baby if you were so uncertain about your own ability to keep it alive. I was also, wildly bitter that they were so happy. Because I, was not. I was the person who was worse off than them.

There is always someone who has it worse than you. So true.
But comparing our visceral responses to someone else’s difficult situation is like comparing apples and oranges. Such a good point.

Unfortunately for me, in this difficult season I’m finding very little relief from these platitudes.

(In fact, they are kind of pissing me off.)

I sat in my infant daughter’s room reminding myself that there were other parents who had it worse than me in the NICU right then. Scarier circumstances. Less support. Fewer resources.

You can’t compare your emotions to other people’s circumstances; I believe that’s true. But there is also something powerful about perspective that can pull you out of a funk and helpful you feel just a tiny ray of gratitude for what is going right.

So which is it? Are we allowed to feel what we feel or do we need to bid farewell to our beloved pity parties and find perspective?

At this moment. Where I sit right now in my plush purple chair, writing with my college education, in the den of my architecturally acclaimed home, in my white suburban neighborhood, in a country founded on freedom, I can tell you with some delight that the cry of my heart is that THIS ISN’T FAIR and I DON’T LIKE IT. And I do not care who has it worse because I am edging towards such despair that I cannot fathom a world where the hurt in my heart is absent.

Tomorrow I will probably feel bad about it and find immeasurable shame in my privilege. I will remind myself that ‘gratitude is an attitude’ and to ‘pull myself up by my bootstraps’ and to ‘put my big girl pants on’.

So there you have it. The end is the beginning and the beginning is the end.

XO

Years ago when I started this blog I thought it would be a fun tradition to write Happy Birthday posts to my 3 kids, telling them about what their favorite song was that year. Not only did I take a hiatus from blogging but many years went by that I didn’t know what to write to them because it had been a hard year. Well, I want to get back to it and challenge myself even when I feel like I have nothing noteworthy to say.

Here is what I wrote to Brelynn the year she turned 6 (a mere 5 years ago – yikes!).

On your sixth birthday you have lived with us for 2 years, 4 months and 6 days. On your sixth birthday you are hoping for an umbrella and want sausage and pepperoni pizza for dinner. On your sixth birthday your favorite song is XO, covered by John Mayer (originally by Beyoncé).

Your love is bright as ever,
even in the shadows.
Baby kiss me,
before they turn the lights out.

On your sixth birthday I am worried. Worried that of all the songs we listen to the one you want to hear all the time has a rather large focus on kissing and boys. I am worried not because I think little of your judgment but because I think so much of your bravery, your intelligence and your incredible strength.

My hope for you on your sixth birthday is that your enthusiasm for this song is due to the creative genius of are Beyoncé and John Mayer and NOT because you are longing for love or thinking that love comes from kissing boys.

So let me make it clear: You, my darling, are more than someone who will be loved by a boy. You have more to offer than a kiss. I pray you grow up to know that. So that when you find someone to love and who loves you back you will love them from a place of wholeness. A place of assuredness. A place that says, “Because I love who I AM I can’t stand to NOT love you.”

 “Find the love you seek, by first finding the love within yourself. Learn to rest in that place within you that is your true home.”― Sri Sri Ravi Shankar

When I think of the trials put before you at such a young age and the brave face you have always put on, I think ‘wow’, this is a girl who will one day be a woman staring down giants with great ease. I can’t help but be amazed at how well you are doing in school, how easily you make friends, how sweet you are to younger kids. The thing I want you to know is that none of your successes have anything to do with dad or I. It’s all you, who you are, who you were born to be. Brave. Smart. Strong. Loved. A child of God.

Happy sixth birthday Brelynn.

XO,
Mom

Kool-Aid

Little girl continues to be full of surprises. We have made it to 34 weeks and passed our latest non-stress test with flying colors. Next week we have what we expect to be our last Fetal Echo and Ultrasound at the Chicago Institute for Fetal Health.

How am I doing? Well…..

I’m sweaty. All the time. I bought special cream deodorant that I can put basically all over my body. And I do. Shout out to Lume for keeping me freshish. Because there is nothing on God’s green earth that could actually keep me fresh at this point.

I’m also sick to my stomach. I have been. SINCE FEBRUARY. Nothing sounds good to eat. AND I LOVE TO EAT. When I do eat, I feel bad after. And guess what? When I puke. I sweat extra.

I’m as short and stout as a teapot. And I swear to God, if you tip me over I’m gonna smack yo momma cuz at this point getting up from being tipped over would be the end of my day. And also, it would make me break a sweat.

In my early 20s I used to laugh at the thought of what I would look like being pregnant. I knew in my head it would not be a cute look on me. I was sure I would look like the Kool-Aid man except with a waddle and in no way refreshing. Turns out. This girl knows her body type because that is exactly what I look like. I’m 34 weeks pregnant and people who don’t see me often can’t even really tell.

So physically, I feel like some blob of a being who is just invisibly existing. I’m too sweaty to wear my hair down and too sweaty to put makeup on and resigned myself to only buying a total of 4 outfits to make it through this summer pregnant. And 3 weeks ago I split a pair of shorts. In front of my 9 year old son who really had the time of his life laughing at my expense.

And then there is my mental health. And since it is late at night and I don’t feel like crying, I’ll stick to the cliff notes.

  1. I’m increasingly anxious about handling “all of this”.
  2. I feel inadequate in pretty much everyway.
  3. I’m lonely
  4. Filled with regret
  5. Wrestling with guilt and shame
  6. I’m angry
  7. Questioning God. Is that even the right way to put it? Struggling with faith? Generally pissed off?
  8. And 100% burnt out parenting. Ha. HAHAHAHA, Isn’t that some shit? HAHAHAHA. Oh the irony. What a joke. But you know, “Gods got this”. Lol. K.

It’s fine. I’m fine. Definitely cried while typing that list. Damnit.

Public Disclaimer: I hope my general public complaining does not put anyone off from reaching out. Or especially from trying to encourage me. I’ve yet to be offended by anything anyone has said to me in an attempt to comfort. There are no perfect words. Heck, I don’t even know what to say to me. I’m thankful for the check-ins and for everyone letting me (mostly) wear my heart on my sleeve.

I know too much.

I think the reason I am so scared of having a special needs child is that I already know how lonely it is. And I feel like just as I was clawing my way up out of my pit of doom, God stepped on my fingers and kicked me back down into the pit.

Back to a million therapy appointments. Back to trying to explain what you’re going through to people who literally can’t understand because they’ve never experienced it. Back to apologizing for insane behavior. Back to noticing people staring in the supermarket.

Fun fact: Did you know when you walk through a grocery store with children who are MULTIPLE different colors than you without an adult male in tow, you get some LOOKS.

I know. I need to meet other Down Syndrome families. I know. I’m going to make new connections. I know. This baby is a blessing. I know. There are so many resources.

I know.

But I also know what it’s like to try and confess your struggle and connect with someone and be dismissed. I know what it’s like to not be believed. I know what it’s like to accept public praise for “what you’ve done” while inside you’re fighting the urge to run. To scream. To quit.

I know too much about it. It sucks.

Another Baby to Love

In my earliest stages of processing this grief the resounding cry that brought me to my knees was, “I just wanted another baby to love.”

When I processed what the rest of my life and my family might look like considering this special needs child I was about to inherit, that singular thought was the culmination of my anger.

To no ones surprise, adopting 3 kids with deep hurts has not been the easiest. It hasn’t been BAD but it has been lots and lots of work. Loving one another has not come easy from any involved parties. Forming healthy attachments with one another has taken intentional and thoughtful steps. Therapists galore. Mounds of books on trauma and love languages and parenting. Late night drinking and ice cream runs.

My point is that is has been non-traditional. If you’ve not adopted I can confidently say that you just don’t know. It is not the same. Again, not BAD but also not for the faint of heart. Forming healthy attachments with adopted kids from foster care flexes different muscles than attaching to neurotypical biological children.

Enter bio kid 1 in March 2020. Man, what a cake walk. Attaching to him was not something I had to evaluate and strategize. Just happened. And because it just happened I was able to enjoy so many maternal moments that I never had before despite already having 3 kids.

I.E. Running to me when I return home. Reaching for me. Insisting on sitting next to me. Listening to me. Being sad when I leave. Allowing me to help with simple tasks. Trusting me. Liking me. It was just easier. And God was I looking forward to having just one more chance at experiencing that kind of undiluted mutual adoration.

So when I was mad and yelling at God, I’d run through all my fears. All the reasons I was so mad He would do this to me. After all I had already been through? Really?!, “I just wanted one more baby to love!”

And then one day it hit me. In one sentence I was admitting that I didn’t think I would or could or wanted to love this baby.

And then I felt shame.

I still do.

I’m still working through it.