Friday, September 6, 2013

Is This Thing On?

I left, I know. For months.

And so much happened.

Oh my goodness. So much happened that when I look back over the years of this blog, the early mothering, toddlers, adjusting to little sleep, all the petty complaints, moving, moving, and more moving, and decisions over schooling and places to live, so little did I know.

But then a few months ago it all came to me.

That every struggle, fight, and tear all had a purpose. Looking back at each pain from every year of my memory, it was all orchestrated, all put into motion; it was all planned. Not one trial from my childhood onward has been in vain.

It was all for this.

Martha Mary is now 9 months old, and I see it as no accident that I stopped blogging shortly before her birth.

Life now is different. How different?
There once was a certain life. There were our childhoods, our schooling, college, marriage, family, and children. Years passed, and then she came along. Now there is now only before and after; a BC and AD of our reality.

Because when you have a daughter who is diagnosed with an Unbalanced Translocation 5;8, and from all accounts and records, she is the only person on the planet with their chromosomes duplicated and deleted in this way, your life is shaken upside down.

If you know anyone out there with a missing 5q.35.3 with a duplicated 8p21.1-23.2 attached to their 5th chromosome, I would travel the world to find them.

Thankfully, she is our JOY. She is our purpose, she is the gift we never thought to ask for.

But it means I'm a Googling monster. I've mastered the art of PubMed searches, and have read every link and journal associated with "Partial Trisomy 8" "8p Duplication" and "5q deletion". The list of diagnoses  and symptoms is extensive. There's time for that later. I'm only just introducing you.

I'm not sure what this blog can do anymore. Like me, it can't be the same. There is no going back. The edges are raw, the pain is too visible and the fatigue wears like a heavy coat. There are tears over the unknown, and tears yet to be shed over heartaches that have happened months ago.

Is there a place for our new life on this blog? Our life is so happy, but it can be hard. Nothing about this beautiful girl causes us sadness. Nothing. But there is so much extra. There is therapy, teachers, people in our home all the time. There are appointments, more therapy, doctors, doctors, and more doctors with sub-specialties I never knew existed.

Let's not leave out the seating specialists, feeding specialists, nurse-coordinators, orthotists, special education classes, support groups, medical supply, feeding tube clinics, nutritionists, dietitians, and oh goodness, I may have just lost you...

But it's never enough. There are no easy answers, and often there are not any answers. There is nothing but an endless string of appointments, follow-ups, and watchful waiting. And do you know what that means?

I'm frustrated all. the. time.

There's time for all of that later, too.

And then let us not forget my Little Men

I couldn't ask for sweeter, more caring sons. These boys hold me together. They are fun, imaginative, affectionate, and keep me moving and ALIVE.

I shall dub this one Strong Father, Strong Daughter.

What will this blog be about? I'm not totally sure. I'm beyond worrying about recipe disasters and the moral obligation for cloth diapering. Seriously you guys, I'm so far beyond that now.

But I don't want to blog about all about my frustrations either. I don't want to blog about being let down; disappointed with those whom I expected more from. I don't want to be "that" mom who compiles a list of what or what not to say to a mother of child like mine.

Really? Do I have to get into it? "No, your advice is not helping me in this moment, and your concerns and questioning do not help me." Am I really going to be that person? The angry one who keeps getting burned and develops a great tolerance to heat but also avoids the fire altogether?

I may not be able to avoid it. I may just get very, very honest. And maybe a little sharp. A little sassy.

Which is hard for a Minnesotan, ya' know. We just don't come out and say it. 

But I love. I really, really do. And maybe love means being a little more honest...and a little sassy sometimes.

I'll do it for her. I'd do it for all of them.



Sarah said...

Looking forward to all of what you have to say!!! Raw. Real. ALIVE! You inspire me . . . and I know I'm not the only one.

Leah Jacobson said...

I too look forward to your honesty. Being real and authentic is really the only way to honor this life that Christ has asked you to live for His glory. To sanitize it would be to reduce the worth of your experience and rob us all of the wisdom that can only be gained through sacrifice. Our Lord has blessed you with a well-trained tongue, and now has given you an experience to share. So do it! I'll be reading and learning along with you.

Mallory said...

Thank you so much for your encouragement! I am hopeful that I can make this whole blogging arrangement work again. It might be different than before, but we'll see where the wind takes us.

You all here and on FB have been wonderful. Thank you!

Abby said...

You, my friend, are inspiring. Love you, love your family, love your blog.

Lora said...

Saw your blog shared on FB. Just wanted to say my thoughts and prayers are WITH YOU! Nothing changes you like becoming the mother of a child with special needs. When we adopted our daughter with CP I was not prepared for how exactly it would change my life! But being a Mama of a child who NEEDS MORE from us than we ever thought we could give only makes us realize how tough, courageous, bold and purposeful we were capable of being all along. I hope you will blog, because someday you will want to look back on the journey!

Mallory said...

Thank you, Lora, for that perspective. I've contemplated blogging about this situation for the last several months, but I am beginning to agree with you that yes, it will be good to remember the journey our family is taking! Thank you for reading!

abri said...

Wow, Mallory. I learned so much from this blog before. I know God is using you to help us understand so much more.

Kristen said...

I am so excited you are back!!!!!! I've missed you!!!! <3 Kristen :)

KK said...

Mallory, I'm so excited to read whatever you have to write! I admire you and will keep you in my prayers as your journey changes you and Mark... all for His Glory.

Mallory said...

Each and every one of your comments, "likes" on FB, smiles and supports near and far have all been deeply acknowledged by me. Please know, every kind thought, prayer and action has been recognized and appreciated. Thank you all.

Here goes nothing!

The Graham Family said...

I have 3 boys and a girl (who has Down Syndrome). I can relate to your words and emotions. Would be fun to keep in touch!

Mallory said...

Thank you, Tracy. I would like to keep in touch, too!