Mostly I was just broken about the world that Nolan would have to live in. I was sure that it would be filled with cruel encounters and that we would always be isolated from the rest of the world, always now profoundly different.
It wasn't irrational of me. We HAVE had cruel encounters. The cruelest. Some I don't think I'll ever share in an effort to spare others who care for Nolan unnecessary strife. We HAVE been isolated. We've gradually lost friends at times and felt that others were largely uncomfortable with the task of handling our unique little family. We've felt more than anything that there are two camps of people: people who possess compassion and people that don't. People who value life and people who don't. Moreover, two camps of parents: parents of children with special needs and parents of "normal" (which is the worst word ever invented) kids. So yeah, you can't help but feel the isolation at times.
Most of all, though, when Nolan was first born... I had PITY for him and PITY for myself. Some definite pity parties were attended by this lady writing this RIGHT NOW ("party of 1, please").
The change I felt these past few years was GRADUAL. It was God molding me into exactly the kind of parent who could handle and find joy in my VERY DIFFERENT LIFE AS NOLAN'S MOM. He heard the words defining my thoughts. He heard the panic and He was present through my couple major pity parties.
By always keeping my faith in Him, trusting Him COMPLETELY when Nolan wasn't breathing, trusting Him completely when I couldn't remember how to breathe myself, I remained in His embrace. Nolan did too. I can finally make sense of the change in me, and I wanted to share it with you.
God has replaced my PITY with PRIDE. My fear with KNOWLEDGE. My inexperience for EXPERIENCE. My tears with His mighty strength. My anger for His peace. My jealousy with His understanding. My anxiety for His Word. My plans for His.
Nolan. He's given me NOLAN.
I'm so proud to be Nolan's mom (in a new way). I'm proud that he has Treacher Collins and that he sticks out in a crowd. I'm proud that I get the chance to walk alongside him as he is stared at and raise awareness about TCS. I'm proud that we get to be a testimony of God's great love and His PLAN FOR PEOPLE'S LIVES. Nolan's radiant little spirit is a testimony of not only God's power but of a divine PURPOSE. In a world where abortion is COMPASSIONATE for women...in a world where life is devalued and unattainable beauty is elevated, Nolan is there roundhouse-kicking the world's messed up dogma right in the face! I'm just stinkin' PROUD of that.
I'm PROUD to sometimes walk along scary roads with my little man because it strengthens us and because God is SO CLOSE TO SUSTAIN US IN THOSE SWEET MOMENTS OF BROKENNESS.
I'm thankful to have a platform...to be called to action as a mom served with a constant dose of perspective through my son's life.
While those words above still fizzle in and out of my head, I find that I'm just so proud of what Nolan's life will be. I don't pity him. I don't pity myself. I pray Nolan never pities himself either. I hope he knows how much of a rockstar he is.
I'm fine being in a separate camp, feeling kind of set apart. I'm enlightened enough to know that having a child with challenging medical conditions and a rare syndrome doesn't mean I'm any more of a supermom than a mom from either parenting camp. I know a mom of five perfectly healthy kids likely has much more to manage in her life than I ever will. I know there is a mom out there who has a child 8,000x sicker than my son who is living out the MADE UP FEARS AND SCENARIOS I use to stupidly obsess over. There is a woman mourning miscarriages and infertility, and I have a child in my arms to love and kiss and fuss over. There is a young adult with no family support, no financial stability. There is someone truly hurting. There are millions who are lost. Trust me, I understand how immeasurably blessed we are...even in the bad times and how COMMONPLACE even troubling medical issues are in our world.
Though we certainly are on a different path here, we're alongside all our other friends, acquaintances and family. We're cheering everyone else on as they plow through their demanding paths. Really, truly! We couldn't be prouder to know vast networks of special needs families and families with rare syndromes as we are to know sweet first time moms here in our hometown succeeding so WONDERFULLY at their commissions as mothers (oh and/or as fathers).
I'd like to encourage you today in these new words-- no matter what path you are on, friend!
The words I actively vow to hear over those horrible lies that depressed and incapacitated me before are "EQUIPPED". God doesn't call the EQUIPPED. He EQUIPS the called.
"Prepared". God's plan is to prosper us, NOT to harm us, to give us hope and a FUTURE! (Jer 29:11)
"Pride". Our God is a great God! He has given us an AMAZING life (ripe with hardships and triumphs to bring us closer to His throne of grace in accordance with His perfect will for us all)! (Col 1:24)
"Certainty". God is guiding us in each individual step of our daily trek. Every step is ordered by Him! (Psalm 37:23)
"Peace". We are not alone, God will fight for us right there in the worst of it here on this earth! (Exodus 14:14)
"Joy". When we are tested, when we are facing insurmountable odds, we are being brought near to God once more in the sweetness and safety of His embrace. He LOVES US SO! (James 1:2)
"Courage". God didn't give us a spirit of fear-- we are made to be courageous! (2 Timothy 1:7)
We can't be discouraged, God is right there in our midst providing us with every thing we need to sustain a purpose-driven life! (Deuteronomy 31:6-8).
and forget not all his BENEFITS,
who forgives all our iniquities,
who heals all our diseases,
who redeems your life from the pit,
who CROWNS you with LOVINGKINDNESS