Yes, a Grumpy McPhee exists...Dear Chubbs,
Today you turn nine months old. Wait, can that be right? It was just yesterday that I was still pregnant with you, worrying about what the future would hold. It was just yesterday that I held you in my arms for the first time before they whisked you away to be hooked up to so many machines that helped you fight for your life.
I can't believe that you've been in our lives for nine months. To be honest, I can't remember life without you. I can't remember nights where you weren't sleeping peacefully in your pink and brown nursery, curled up around your blankets with one foot propped up on a bumper pad in true Queen of Sheba style. I can't remember waking up in the morning and not seeing your beautiful face smiling at me/having a heart attack as I see your nasal cannula ripped off your face while you are swinging it around your neck with gusto.
When I first thought about writing your nine month birthday post, I wanted to write about how hey, it's been nine months, I'm so over the Down syndrome thing. I wanted to say that it never ever bothers me. I wanted to say that I don't think about it anymore. I wanted to write that. But that isn't being completely honest, and believe me, if I was only posting things that I thought people wanted to hear, there is a lot on this blog that never would have appeared.
Lately I have been doing a bit of babysitting for your friends...those just a little bit older than you. I look at these smart, smart children and my heart aches. I wonder, will you be able to do these things when you're their age? Will people call you smart like I call these children? Will people be amazed by your independence and wowed by all you can do and say?
I think about how when I have a few minutes extra to spend with you, I can't just play and be with you- I have to do therapy exercises so that you can keep developing. Sometimes it feels like you are more like one of my students rather than my daughter. Keeping you on task is a full time job.
I have days where I loath the oxygen cylinders piling up at my house. It has been nine months. And we are still dealing with oxygen. My very frustration with this fact could fill thousands of posts....this frustration is so present in me that I barely write about it anymore because this frustration has begun to sound an awful lot like complaining. Last week some of the tape from the nasal cannula ripped a huge hole in your cheek. I hate, hate, hate dealing with this still.
I fear the "what ifs" and falling on every negative side of statistics. I hate that out of all of the Ds kids that I know, you seem to have had the most problem just getting off of the ground. It has taken you nine months to actually be a healthy baby. Nine months. Nine months of countless doctor's appointments, five weeks of NICU, three surgeries, two devices placed in your heart, one g-tube/mic-key button, too many nights sleeping on the most uncomfortable bed in the world next to your crib on a pediatric floor, I've lost track of how many conversations I've had with doctors that I don't understand, hundreds of dollars in electric bills running your oxygen machine, cylinders and nasal cannulas and medicine bottles appearing common place around my house, so many therapy appointments and you are just now starting to sit up, an ulcer from dealing with your "social calendar"/appointment book.....
Honestly? Sometimes being your mom takes so much out of me that I can't keep up with other things in my life. You overwhelm me. All of the extra things that I do for you consume my thinking and my time.
But......while we're being honest... I also have to say....
I love you. As I look back on all of the things that I just vented about to you, dear Chubbs, I know that I needed to say that because it is hard to hold all of those thoughts inside. I need to be honest.
But no matter how hard or how unfair all of the other stuff seems at times, I absolutely still love you. I love you for exactly who you are. If that means taking on a whole baggage of extra responsibilities and worries....that is OK because that is the way it is meant to be.
In fact, when I put you to bed tonight and you wrapped your little arms around me, buried your face in my hair (trying to eat it) and then you pulled back to smile at me, I felt my heart skip a beat as I knew that I didn't want to be anywhere else. I didn't want to have any other daughter.
As I watch you sleep with your little rosebud lips parted every so slightly, the eyelashes that you worked hard to grow lightly brushing your cheeks, and I watch your chest move up and down slowly with your breathing- I am overwhelmed with thankfulness that you are alive. Your life is a miracle which I will never take for granted. You are our most precious gift.
We have done what we have had to do to help you fight to live...and honestly? It has been so worth it, I wouldn't change a thing.
It would be lying to say that having a daughter with special needs is easy. It would be lying to say that with a little prayer and acceptance, life continues to sail along in an easy fashion.
But it would also be lying to not reveal how deeply and profoundly that same daughter with special health needs will teach you to love. It would be lying to not reveal the other side of the scale- you know, the one with large boulders on it opposite of the small rocks?
When I put you on my chest, face to face and slightly bounce you- you laugh. Your smile spreads across your face and your eyes light up and twinkle and then you make the most amazing sound. Laughter. It bubbles up from within you, reaches out and grabs my heart. Without a doubt, hearing you laugh is the best sound I have ever heard. It never ceases to amaze me. Your laughter is the fuel that keeps me going from appointment to nasal cannula cleanup.
You are truly the most amazing thing that has every happened to me. You have changed me in ways that it is difficult to even recall my old thinking patterns, my old views on being a Mom. You complete my life in a way that I never would have dreamed because, honestly? God is good. God knew that I needed you even when I thought that he had made his first mistake. God knew that Addison Chubbs Mcphee needed to be my daughter. Honestly? I couldn't be more thrilled or excited at the prospect of my job title as your mom. It is the best job that I have ever had.
The future? Well, we will take it one day at a time. One thing I do know- God didn't bring us this far to dump us now. One day at a time. We have found our new normal and have enjoyed settling in for the ride.
I'm sorry that sometimes I struggle. sometimes I fear. sometimes I doubt. Dear Chubbs, I know you deserve so much better than me, but I just want you to know that I am human. I want you to know that happiness is a choice.
Life is sort of like a cross stitch pattern. When things seem horrible and unmanageable at times, perhaps you are looking at the wrong side of the cross stitch. All you see are tangled strings in various colors creating a backwards pattern. It is confusing and daunting to look at. But if you flip it over, you see the most amazing picture, loving stitched into the fabric.
All of the "extra stuff" that I deal with as your mom is the colored strings- wildly flailing, dimming color, seeming not to make any sense. If I stare at that side of the picture too long I get discouraged and frustrated at the confusion. Sometimes I just need the reminder to flip the fabric over and look at the vibrantly beautiful big picture. And that big picture Chubbs, is you.
I can't think of a more beautiful picture.
I am proud to call you my daughter.
I love you more than I can even say.
Thank you for your patience with me.
Happy nine months.
Your Mama (note: I was trying to get you to say Mommy, but according to your therapist, Mama is more achievable at this point, so we'll try this out and see how it fits.)