Thursday, July 7, 2011

Someday You'll Need to Hear This

It's late. I cannot sleep. I have not blogged in months. But here I am. I can only conclude that the thoughts racing through my head tonight need to be recorded here.

One year ago, I spent tonight packing. Packing for Philly. Packing in silence next to my husband who knew better than to try and tell me everything was going to be fine. Packing to take my son to a surgeon that could help him. Save him.

I am not a terribly sentimental type and typically try to avoid commemorating strange anniversaries like this one. However, I think it has taken me a full 365 days to really understand the impact of our time in Philadelphia and how it changed our lives.

We are all a little emotionally scarred. A little jumpy. A little quiet. A little reverent about last July. Truth be told we'd delete it all if we could. And truth be told we'd do it all over again if we had to. I only partially understand the miracles that were made ours just one year ago. And I am ashamed to admit I have spent the last few months losing sight of those miracles.

McKay is busy. Growing. Hilariously funny and affectionate. He is also still quite silent. We have engaged speech therapy for nearly a year now without success at verbalization. Over the last few months suspicion has grown that more may be going on with our little man. His therapists have shifted from believing that Mac's lack of speech requires treatment of an understandable delay, to a belief that his inability to form any semblance of a purposeful sound is likely a symptom of a potentially larger developmental diagnosis.

Now it's still early. The jury is still out. And we have at least half a dozen appointments and evaluations scheduled with various experts between now and September, so I will avoid speculation. What I know for sure is that all of the talk and referrals and inferences have sent me into a bit of a tale spin. And I've been angry, very angry about the prospect of any more long term challenges for Mac. ENOUGH is ENOUGH is ENOUGH.

I've spent a good two months now feeling angry. And you know what? Being angry is exhausting. It takes a lot of energy and produces crap. Crappy relationships, crappy feelings, crappy progress to nowhere you ever wanted to go anyway.

So I prayed (for the first time in a while) to be done being angry. I prayed for understanding. I prayed to regain a vision of McKay and his purpose and the destination of our little tribe. And you know what? I received an answer. And this, I suppose, is what I need McKay to know someday --

I sat in church on Sunday and listened dutifully to as much of the meeting as I could in between trying to keep my boys entertained and fed and quiet. And then a speaker stood up to share his testimony that does so often --an adult special needs child of an extraordinary couple in our neighborhood. I do not remember a word he shared, but I was overcome with the assurance that he was perfect. He was leading the life that was meant for him. And he was happy. I smiled -- right out loud. I believed I had received an answer. I am supposed to be at peace with whatever McKay's journey will be. Okay, I get it. Thanks God. Sign me up. I'm ready to re-enlist.

Later that afternoon I ran into the man and his mother in the church parking lot. I planned to introduce myself and explain a bit about McKay and the answers I was seeking that day. I planned to thank them for their example. But I was quickly stopped short after sharing my name by the man who grabbed my hand and said very matter of factly, "I shared my testimony for your son today. For your son."

The tears were instant. I sobbed. I tried to explain my emotion to the mother. But the son just grabbed my shoulders and pulled me in for a hug. "For your son, for your son," he said over and over again. And I knew this was more than an answer to my prayer I somehow retrofit to make myself feel better. This was a straight up Answer with a capital A. God is aware of my sons. He is aware of my anger, my hurt, my marriage, my family. He is constantly, caringly, overwhlemingly aware.

So there it is. I need to remember 365 days from now and 365 years after that, that there is purpose and plan in what seems a chaotic mess when I let less than divine feelings take over. There is much work ahead. But I know now that it is necessary work. Work that will take us somewhere intentional, no matter the outcome.

"Always we hope someone else has the answer. Some other place will be better, some other time it will all turn out well. This is it. No one else has the answer. No other place will be better, and it has already turned out. At the center of your being you have the answer; you know who you are and you know what you want." ~ Lao Tzu

And what I want is happy children. A happy home. And children with memories of a sincerely joyful mother. That much is in my control. Praise God for his patience and generosity in moving my feet to a better view.


You, Me and Little Mr. B. said...

You are such an inspirational woman. I am touched by every word and emotion you have shared. You are doing an incredible job and little Mac couldn't be luckier to have such a wonderful family to grow with. Keep moving in the direction you are meant to go and know that you are doing all the right things. Your family is amazing and little Mac is and will be a wonderful soul. Hang in there.

Shelby said...

Wow. I have tears running down my cheeks. God works in mysterious ways, that's for sure. And somehow He always seems to know exactly what we need precisely when we need it. I'm happy you found your answer. It sucks to feel lost when so many people need you to be strong. You are such an inspiration Mindi and your kids and family see that. Mac is an incredible little man and will do amazing things. I have felt this from the beginning of his fragile life. Continue to keep your chin up! You're doing a great job! :)

Kyle and Alli said...

What an incredible assurance that you are not alone in this life and that Mac is totally and completely loved. It is even more special that this answer was delivered to you by a very special son who is closer to the Father than we could ever know. Thank you for sharing this today. I know that the next few months may not bring the answers you seek, but I am so glad you updated. We have been wondering about your family recently as we started our own journey with Speech therapy and we will pray that you and mac both will be able to endure well whatever is asked of you both.



Lisa Johnson said...

You are a beautiful writer and a beautiful mother. Thank you for sharing. My son, Field, also has DILV and TGA. He just turned one and we have been through the Pulmonary Artery Banding and the Glenn. The Fontan is still looming over us. I LOVE what you said about being happy with where you are right now and with the circumstances you are living. None of us would ever choose this journey, but I agree with you and I want to be remembered as a joyful mother...I want to be at peace with my life. Working on that for sure! Anyway, just wanted to say Hi and encourage you. Mac is awesome and there are special things in store for him and his life. I just know it! Hugs!

Lisa Johnson

Kerri said...

Thank you so very much for this. I desperately needed this tonight. Funny, I just "happened" to stop on Paul Cardell's blog and then "happened" to link right onto your blog. Two clicks and here I am. Reading exactly what God intended me to read. I've had the "Enough is enough" sour attitude for a while now and I'm relieved to see I'm not the only one with a human heart. I have so many ups and downs, even when I'm supposed to keep on keeping on all the while smiling and graciously accepting our path.

Thank you for your uplifting and encouraging words, exactly when I needed to read them.

Kerri Pennington

Nicki said...

Wow! Tears are streaming down my face. Tender mercies can be a bit overwhelming sometimes. Thanks so much for sharing!

Aimee Hardy said...

Thank you for reminding us all that he is aware of each of us and our needs. I needed that today.

Christina said...

Mindi, I love reading your posts. Your words are very touching. It is a great reminder of how much we are loved by our Father in Heaven. Thank you for reminding me. Hoping you find answers and understanding.

Hugs & Prayers,

Patti said...

Love Carey, love his parents, love you, love your kids and I love my Heavenly Father.

Terry said...

Thank you for sharing that Mindi. Please know that you are performing a great service just by keeping this blog. You have been blessed with a great talent for writing and expressing your thoughts in a way that touches and benefits others. Just as the Lord used Carey to reach out to you, he used YOU to reach out to many others, including me. Thank you!

Christina Chau said...

That was beautiful, Mindi. A good reminder to let go of anger - because anger can infiltrate every aspect of our lives (I really needed that reminder today). An even better reminder that God is active in every part of our lives, nothing that happens is out of His control. Mac is already a hero to some of us, words or no words =)

Emily said...

Mindi, Just like everybody else, I have tears streaming down my face and I feel like I needed to hear this tonight. Just like that amazing man in your ward, I felt like you were bearing your testimony for my son tonight, and I am beyond grateful. Thank you for your words, for your honesty, for your beauty, and for your strength. Your boys are so blessed to have you. I am blessed to know you. I will keep you and Mac in my prayers as you try to find some concrete answers in the next couple of months.

heidivee said...

He is aware. Such a beautiful experience. Thank you for sharing it. Love you guys.

Us Three and Daisy B said...

HAPPY BIRTHDAY TO MR. MCKAY TODAY! I HOPE IT WAS A JOYOUS ONE! Look forward to the next update on you and the family. I miss them. Give McKay a big hug for me!

This is our journey said...

we may never understand why we are given certain journeys. But just know that we are stronger then we think we are. and you are doing such a good job with mac. i have only been reading your blogs today but i can just tell you are very strong. And i hope i can get out of that whole angry faze. my daughter has a heart defect. some days i hold my head up high and feel very strong that i can handle this journey im in but most days im still angry and cant understand....but what gets me feeling better is telling myself i can do this.....I CAN DO HARD THINGS! it usually works.

likeschocolate said...

Hang in there! It is hard to understand the journey God takes us on, but if we are patient he makes our lives truly a miracle.

The Smith's said...

How are you all?