Today

Today I am afraid.

No, not afraid, terrified. I am so worried that my stomach aches.

And I wish I had never heard of Down syndrome.

I long for the care-free days when a rash was probably a heat rash and a change in appetite was probably teething and crying was just crying.

Today nothing has really changed. It was just kind of a hard day. The Blessing was extra fussy. She didn’t eat much at all. She has a runny nose.

The other kids are all fussy, too. The other kids have runny noses and some of them are coughing. But I give them extra vitamin C and let them watch a movie and think nothing of it. It’s just a cold, I know, and they will be fine.

But The Blessing gets a runny nose and my mind says, “she could die from this!” Her appetite changes and my brain screams, “she’ll starve to death!” She gets a rash, and I think “Is it leukemia?”

Yesterday I was fine. Tomorrow I will pull it back together. But not today.

Today I am worn out. I am tired of balancing on the brink of terror, keeping my fears in check as I try to enjoy my daughters infancy. Today my face is red from crying and my chest hurts from the burden that I carry. Today I am sad for that child of mine. Today I am sad for myself. Just for today I am fully experiencing my helplessness, my inadequacy, and my fears.

I am not strong enough to bear it.

I am not smart enough to fix it.

I am not brave enough to face it.

Having a child with Down syndrome is an enormous blessing. She brings to our home so much richness, so much love. But today I wish she didn’t have Down syndrome. Today I wish she could be healthy and that I wouldn’t have to worry anymore.

So I guess this is what it is to be a special needs mom. To carry a conflict inside that cannot be defined or defended. To struggle through the tough days.

The days like today.

Enjoying The Blessing

For awhile I was obsessed with Down syndrome. The birth of The Blessing sparked in me a wild fire of curiosity and I spent many hours researching trisomy 21 with it’s many and varied complications, reading blogs written by mothers of children with Down syndrome, and requesting stacks and stacks of books from the library. My conversations were centered around The Blessing and her extra chromosome, my mind continuously mulled over the ramifications of it, and when I gazed at my tiny infant’s face, I wondered what she would have been like if she had been born “normal”.

But soon all of the information, emotion, and fear faded away, leaving only a gorgeous baby in my arms. She has started smiling, laughing, interacting with us just like a “normal” baby. She breastfeeds and gains weight, she grows and learns, she sleeps all night and smiles all day. I sort of started to forget her diagnosis except when in public (but that is another post) or when browsing my Facebook page (which is now subscribed to all sorts of Down syndrome related pages).

Sort of.

The other night was like any night. All of the kids were in bed asleep and it was quiet in the house as The Man surfed the web and I sat knitting on the couch. The Blessing had to be woken up to one last time that day, around 9:00 (or she will go too long between feedings), and so I put up my knitting and got her sweet, sleepy self out of her crib. She stretched and complained a little at being wakened, and then she curled into my chest and fell right back to sleep, as her sock fell off of her foot and onto the floor. I swooped down to pick it up as I walked out of the room.

I sat down on the couch and started to put her sock on her foot. And then I saw it. Now, I know her sweet little feet, so cute and tiny. And I have noticed her “sandal toe” before, many times, in fact. It was just that in that moment I had forgotten that she was my baby with Down syndrome. In that moment she was simply my baby. I looked at her itty bitty toes and pulled a little bit of lint out from between them. She stretched again and opened her eyes, squinting at me in the bright light. I saw afresh the shape of her eyes and felt a stab of sadness in my chest. And something else. Pity.

Right now, she knows only love. She knows our faces and our smiles. She hears the lullabies that The Princess sings to her. She feels the tight squeezes of The Munchkin’s hugs. She is continuously talked to, kissed, cuddled, sung to, and played with. She is surrounded by a cloud of happy people, people who don’t care (or don’t know) that she is different. She doesn’t know that she is different.

But someday she will.

When I think of my other children and their futures in this world, I have no doubt that they will be successful, liked, and happy. I see for them great accomplishment, independence, and joy. And, most of the time, when I think of The Blessing’s future, I think of the joy and sunshine she will bring (and has already brought) into our lives. I consider the options we have and the steps we must take to help her. I think about doing whatever it takes to ensure she gets every opportunity to succeed. And I have hope.

But that night, my heart swelled with pity for my little girl. Life will be harder for her, won’t it? She will encounter more prejudice and stupidity than her siblings will. She will have to work harder to get less. She will struggle with things that we take for granted. Her life will be very different than ours.

When I shared this with The Man he was quiet for a few minutes as he pondered my words. We both sat looking at our daughter who lay on the couch between us, kicking and smiling. I felt tears stinging my eyes as I processed the sadness that had welled up inside.

Finally, The Man said quietly, “We just have to enjoy this time that we have right now.”

So, I packed up my pity, picked up my baby and tickled her so that she wiggled and giggled and her eyes sparkled. And I enjoyed her.

IMGP0958

The Same But Different

I have seven children.

IMGP9936

From oldest to youngest – The Bookworm, The Boy, The Dancing Queen, The Princess, The Munchkin, The Fraggle, and The Blessing
See my page, “The Flock” at woolandchocolate.com for more info

I have been raising kids for over thirteen years, now. And practice really does make perfect. That is not to say that my parenting is perfect (because, Lord help me! it is not!), but I do know what I am doing. I have had years of trying things and seeing what works, experience in tailoring my philosophy of parenting to fit each unique child, and have learned from so many of my mistakes. I think I didn’t really know what I was doing until baby number four (that would be The Princess). Yes, it was only after four children that I was confident in discipline, sure of my systems (cloth diapering, for instance), and comfortable with our homeschooling. So, by the time The Blessing, our seventh baby, came around, I was pretty sure of myself.

The Blessing is different. She has a unique set of circumstances. Circumstances which I am wholly unfamiliar with. And it scares me. I read books about raising a child with Down syndrome and they all stress the fact that she is a baby first. “Treat her the same as you would a typical child,” they say. And that sounds great – it’s a relief, even. I can do typical children, therefore I can do The Blessing, too.

But in practice it is not so easy. My heart aches when she cries and my mind questions everything again. Like a first time mom who has no experience, I feel a little shaky. I worry with every diaper change, I watch for any sign of illness. I question if she is getting enough milk and will my supply be enough? I wonder if she sleeps too much. I wait for each developmental milestone with baited breath – will she roll over on her own? or will I have to help her learn that one? I pray that she will live, grow, and thrive. I am constantly aware of her weaknesses and constantly questioning myself and my abilities. Can I raise this child? Will she turn out okay? It’s almost like I am starting over.

On one hand, this is not so fun. I liked the confidence that I had with the later kids. When I wasn’t worried about a little diaper rash or wondering why the baby was crying again, I was free to enjoy the baby that much more. I was so relaxed and happy, knowing that they would walk and talk and run and develop at their own pace eventually becoming the adult they were meant to be. I like not sweating the small stuff.

On the other hand, it has been good for me to reevaluate my parenting. What kind of parent does this child need me to be? I get to learn about infant and child development from a whole new perspective. I am going to have to be proactive in helping her get to the places that my other kids got to on their own. My ideas will be challenged and my skills will be honed. I am going to have to become the mom that The Blessing needs, and that will be good for everyone.

So it is the same, but it is different.

And it is good.

IMGP9859