The Mama Chronicles: on my knees

{This post is hard to write.  I am not writing it for you to feel sorry for me or my daughter, yet to know where I’m coming from.  We have a good life.  No matter the challenges, my kids are my entire world, diagnosis or not.  As you read farther, I hope to put into perspective some of what other moms go through on a daily basis.  Some of you will appreciate the rawness, while others may wish to pass on this post.  Either way, its real life and I’m thankful for every single second.}

There isn’t a day that goes by that I don’t look at my daughter’s face and feel grateful for being her mom.  Also, I can say with absolute certainty that there isn’t a day that passes that I don’t feel like crumbling for her. My five-year old daughter, whom I speak of often was born pre-mature with Down Syndrome.

I knew I was in labor.  I recorded all of my contractions, feelings, everything.  I was ready to call the midwife to let her know that we were having a baby sooner than expected.  After hours of contractions that continually grew closer together, I knew that I needed to rest.  I was in for a long day ahead.  I went to bed and awoke at 6am to blood covered sheets.  After a great deal of panic, we rushed to the hospital.  There we met with a team of doctors, specialists and surgeons.  Hours later, Ingrid was delivered.  What you expect from any delivery is to deliver and immediately see your new baby.  Not the case.  As soon as she was delivered, she was rushed off to be seen by nurses and doctors.  I do not recall there being any sound.  Especially the sound that everyone was hoping to hear.  Ingrid was not crying.  After what seemed like the longest seconds of my life, she made noise.  A surgeon approached my bedside, while still in labor, to tell me that he believed my seconds old daughter has Down Syndrome.. and walked away.  No explanation, no further conversation, no room for questions.  As distraught and shocked as I was, my midwife at my feet was just as appalled.  All I could think was “What are you saying?  How do you know?  She was just born!”  I was not in the position to be making a fuss, yet all I could do was beg to see my baby.  At first sight, none of their concerns mattered.  She was mine.  She was perfect.  She will conquer the world, no question.

What I did have to do was come to terms with everyone else.  Ingrid’s diagnosis was serious, but that didn’t change the impact this beautiful girl had on my heart before I could hold or see her.  She was mine, perfect and precious.  There was never a doubt in my mind that Ingrid would be fine.  There was never a doubt that she wouldn’t do amazing things in life.  What we didn’t expect was the reactions from others.  Phone calls apologizing to us for having a special needs baby.  People, whom we thought would react differently saying things such as “I just can’t deal with this”. All I could think was Thank God I have never asked you for help, to care for her, to “come to my rescue”, etc. I had more difficulty with grasping this reality than that of our child’s diagnosis. How will the world treat her? Will they see her for who she is or simply see a girl with almond shaped eyes and a diagnosis? THIS is what made my life complicated. Not the doctors appointments to assure us that she was healthy, not the hospital stays to help her thrive (because there was a time when she wasn’t), and not the days of zero hours or minutes of sleep.. all while trying to keep up with her twenty-one month old brother. It was the words of others that was crushing, the stares, the comments of discontent on our behalf.

From that moment on, I’ve lived by one philosophy. She is my daughter, perfect, no different from anyone else on this Earth and for as long as I’m alive, she will always be treated as just that. You see, no one can prepare you for any of this. Sure, you can gain knowledge from books and advise from people who are living a similar life, yet no one can tell you how to treat your child, how to react to the hard days, how to handle the stares and apologies, how to stand-up to professionals because your gut feeling as their mother is telling you that they aren’t right. None of it.

Ingrid has gone through phases that I couldn’t fathom. Every child goes through phases, changes in behavior based on a number of factors, no two children are alike. I never realized, and some days I still don’t get it, how to ease Ingrid when she is completely out of sorts and losing her grip on reality. Sounds harsh, right? Without sounding so, it’s very difficult to explain to others. People with Down Syndrome seem to be characterized their bubbly personality, energetic outlook on life, and being a joy to be around. What you don’t hear about is the breakdowns, cowering in corners or under tables because every aspect of their being is uncomfortable. Situations that we take for granted, my child sees as an attack on her person. It’s very likely that if you see her in public, she isn’t going to be the sweet little girl who says Hello, waves, makes polite conversation. She will be the kid with her face buried in her knees because she doesn’t want you to see her. She will be the sweet little girl who is petrified to think of you looking at her. She will be the little girl that takes at least an hour to warm up to other kids at a friend’s birthday party. Don’t get me wrong.. she’s a delight to be around. But if she isn’t sure about you, you are not in her inner circle of comfort and don’t expect anything from her. She’s a tough little thing. She’s brilliant, resilient (sometimes!), and a total joy to be around most of the time.

Here’s the kicker.. as beautiful as Ingrid is inside and out, she can be one of the biggest challenges of my life. As her mom, I have days that all I want to do is walk away. Not in a forever kind of way, and definitely not in a harmful way, but just walk away. Some days I’ve been told to “shut up” more times in a single day than most people are told in a year. You might think its our parenting, and maybe you have a point, but I feel that flooding her with love is much more effective than shouting (which I do, because I’m human) or spanking. If you know me, you know that I have the most amazing, supportive parents a person could have. That said, my mom has listened to me sob on the phone more times than I can count because the days are just plain hard. The way the world is treating her, the way she’s treating the world.. and what if I’m making it worse?! I don’t know most of the time. I’m totally winging it. I tried to read the books and listen to other parents in support groups, but that isn’t me. I never grieved my child’s diagnosis as they’d describe. I never thought I couldn’t do this. I never thought life would be easier without her. NEVER. There have been hard days, yes. But she was made by God’s hands, as perfectly as he’d made you and me.. and this is something that I have to remember on a daily basis.

We take for granted many daily tasks that my child just can’t do. Sitting in a crowded restaurant, going to a movie theatre, or even school. I feel that I need to censor everything for her because I know her best. I know that she will not enjoy the same things that most kids do. I want her to try everything she can, yet I know her limits and ques. I know when she’s had enough or when she’s just being stubborn, but that doesn’t negate the fact that her “done” is different from most people’s. I’ve sat through countless meals in public, eating with her on my lap, face buried in my neck and begging to go home. We’ve had to talk her out from underneath tables because she thought there were too many people around her. I’ve had to beg her not to hit herself or pull her own hair because she’s hit a sensory overload that I can’t even comprehend. Meetings with school teachers and psychologists that don’t understand her speech or how to handle her behavior or lack of. IEP meetings that I dread because it’s the same all the time.. I am my child’s advocate, her speaker, her thoughts, her defender, her body-guard, her mom.

You wouldn’t know this, but I’ve literally spent one single, solitary night away from my kids in their lives. One. I did so because I needed to breathe. I needed a moment of not carrying my five-year old like a baby because she’s unwilling to be around anyone else. Because I needed a moment of quiet. A moment to gather my thoughts. I needed reassurance that someone else in her life can handle her for just a bit.

As I write this, I fear that the wrong impression is being released. This life that we’ve been given is the best. Yes, it has its challenges, but I wouldn’t change one day of it. The hard days will never go away. I’ll continue to struggle wondering if I’m doing this right, just like every mom. But one thing I am sure of is this.. nobody will ever love my kid the way I do. For the days when I have to walk away and let her dad take care of her for a few hours while I work or just need a break, are insanely heartbreaking. Hearing her cry, pleading to come with me, saying “mommy… mommy..”. Those are my saddest moments.

Like all children, mine are completely different from one another. I appreciate their differences and likenesses. My son adores his little sister, yet they have a very typical bond. They tease one another, they get on each other’s nerves, etc., but he’ll do anything for her.

This may have sounded like a pity-me story. I sure hope that isn’t the case. I guess I just wanted you to hear the realness of life from a different prospective.