I know. You don’t want to be called out here and made to look like some freak show. You don’t really want to even have other people know you are secretly reading this.
Because that would make you different.
That would make you special.
That would put you on this pedestal.
All you want is normal and to be treated normal.
But you also want understanding.
Because your life is so different then you ever imagined.
Normal means nothing to you because you can’t relate. It actually makes you a bit angry.
You don’t even really want normal either. You just want healing.
You want genuine care. Engulfing hugs. Encouraging smiles and gestures of love.
And the scale is never balanced.
Not that you want it to be…..because who in this life ever has a perfectly balanced life? Yeah….I know. That friend that seems to have it all together. Well, let me tell you a secret. She’s human too. She’s walking the same planet you are. Perfection will not be reached until Heavenly Eternity, so relax and refocus. You’ve got a story in life that is uniquely yours and no one else can play it out as you will. You’ve got Gods fingerprints all over your life and His engulfing love.
I have a little story to share with you and it might get a bit messy and hard.
I was there. I was the mother of a child with multiple medical complications. We called her our Wildflower Child. She was beautiful. She was fiesty. She was anything but typical.
This photo was taken just after her diagnosis of NCS, a genetic disorder with no cure. She was in the rare ‘ sleeping mode ‘ and slept through mostly all the different poses we tried. She was 9 moths old.
I was naive. But that was OK. You cannot comprehend what you do not know. And God is gracious like that. Showing us through each day, meeting us where we are and leading us so gently even when life slams us face first into heartbreak.
I have so much admiration for all mommies, but Mommies of Wildflower Children are especially on my Super Hero status list. You have one of the hardest jobs given to women.
Mommies are created with Hearts to love.
Mommies of Wildflower Children love fiercely. But love is not returned in typical ways.
I know how much it hurts to not have eye contact with your baby. I know how hard it is to hear the cooing and see the smiles from across the room but they stop as soon as you come near and talk to them. I know how much your heart longs for little arms to reach up and ask for embrace. I know how helpless it feels when nothing quiets the wails and you feel like you have no control. I know how it feels to have someone else hear the first giggle and you wonder what you are doing wrong that the giggle didn’t come at your house. And yet, you are so happy that there was a giggle! I know how you second guess yourself and doubt your own instincts and wonder if you are a good mommy. I know how hard it is to decide if you should pursue therapy or enjoy the time you have together. I know how confusing all the IFSP questions can leave you feeling. I know how you don’t even know how you feel yourself. I know how it feels to watch your child interact better with the therapist then with you and while you are wildly glad, you also feel rejected, and that makes you feel vulnerable and ‘bad momish’ and miserable. I know how hard it is to do the therapy sessions in the thick folder left on your kitchen table. I know how easy it is to kinda stretch the truth when you report on how much home therapy you are getting done. I know you feel maxed out and sad and yet like therapy is one thing you can actually DO to help your child.
I know about hospital days. And nights. About bossy nurses and sweet angelic ones. About Doctors that listen to you and Doctors that have other important things to fix. About feeling like you can never totally relax, because there may be a medication missed, or a dosage confused. I know how it is to watch your child with a Hawks eye for the first flush of fever or weird rash or rapid breathing. I know about ordering oxygen refills and formula and perscription refills. I know how you sit in the hospital and marvel at the night shift nurses with kids at home and wonder how they do it. How they must be so much more capable and resilient then you, who after nights of missing sleep (though you don’t give yourself that credit) collapse on the hard portable cot and don’t hear your daughter cry that night. (Just for the record, I currently work night shift and I am not nearly as exhausted as I was while being a mommy in the hospital:) I know how your child’s birthday is tattooed across your mind like drinking water. How it feels rolling off your tongue when you can’t say anything else coherently anymore.
I know how you wonder if you can even be a regular mommy,or if you are turning into an adrenalin induced mirage of a mom. I know while you take things in stride and with grace, or helplessly fall apart and can’t seem to breathe, you never feel like you are quite enough. I know that you want to spend more time with your other kids and family and husband, but the choking noise from the bed has you grabbing for suction and everything else has no choice but to wait.
I know you love what you do in an odd way. You hate it and you love it and you think you’re a bit crazy to feel two such powerful emotions streaming in your own body.
I know that bond that develops. The gestures and glances and cries only you can interpret. The thrill you feel when they snuggle close and you know they feel so loved. And so are you. (Tears)
I know how thrilled you are when a nurse or therapist connects with your child and there is that amazing feeling of having a true friend for your Mini You.
You are your child’s voice, your child’s eyes, your child’s mobility. You are on high alert….all the time. While you sleep or wake. You are a 24 hour, 7 days a week always on call Mommy.
You are a super hero even when you don’t feel like one. You are amazing with bleary eyes and a breaking heart.
These words are for you, my friend.
Be gentle with yourself. No person is perfect. Mistakes will occur. You will make a ‘bad call’. It’s OK. You may feel like the mastermind of your child’s medications and health, but you don’t have to do it alone. You have a fortitude and wisdom at your fingertips that comes from God alone. He is ultimately in charge and you can relax and rest your case and your child’s case into His hands.
You have what it takes and you are doing a fantastic job. Gods strength is perfected in your weakness.
” For when I am weak, then He is strong.”
Your biggest strength….the things that bless others the most and minister the most for God , can be in your weakness. Because in our weakness and brokenness, glory shines from God and that beauty outplays any we could seamlessly do ‘without trying ‘. ( we can do nothing on our own, because through Him everything was created and exists)
Your weaknesses and strengths do not define who you are. You are defined by what God says about you.
“I have loved you with an everlasting love.”
(even when in your total tiredness you snap at your husband, you are not less loved by God. But I hope you apologize 🙂
“A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed.” Job 14:5
(you can do everything In your power to keep your child healthy, but God numbers each of our days. Our times are in His hands, and His plan is ALWAYS good.)
“For the LORD your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah . 3:17
(you can simply rest in the one who delights in you. whisper little concerns and fears to Him. He is not a distant God but has given His Spirit to minister to us and comfort us in our weakness and needs. )
I heard that an air control tower specialist, and a soldier in combat are two of the most highly stressful jobs a person can have. The first one has the lives of hundreds of people ‘in his hands’. The second may die with one mistake.
I heard that a mommy of a special needs child faces the same amount of stress. I know….that life and death are in the Lord’s hands. My head knows that, but my heart is off beating in my child’s body, and that’s where the stressor lies.
You, my Mommy friend, are stronger then you know! You are facing obsticals no one has proper words or etiquette to broach. And here I have muddied it by trying. But hear my heart through the ‘dust of cumbersome words’. I have struggled and failed and gotten up again and tried and cried and despaired in all these areas, but God has never left me. Never turned His back or thrown up His hands in despair. He steadies me with His love.
Even when we kissed our daughter for the last time and she ran to Jesus….He still steadied us.
I know how hard it is to follow my own well meant advice, but please…..
Take a break. Breathe fresh air. Take time to cry. Laugh out loud. Allow yourself to be silly. Find your own blue sky every day. Give yourself some slack. Gentle your thoughts and words. Get some rest. Accept help. Keep your marriage a priority. And of course….have conversations with God ( even when they feel like one sided rants).
And always remember….when you have God….you have what it takes. No matter how insufficient you may seem.
Beauty thrives in hard places!
Even the devastating fire cannot destroy the brave wildflowers.
Because our God is a God of miracles and He is shaping “a diamond out of dust” as the beautiful song goes…
Here and now I’m in the fire, in above my head
Being held under the pressure, don’t know what will be left
But it’s here in the ashes
I’m finding treasure
He’s making diamonds
He’s making diamonds out of dust
He is refining
And in his timing
He’s making diamonds out of us
I’ll surrender to the power of being crushed by love
‘Til the beauty that was hidden isn’t covered up
It’s not what I hoped for
It’s something much better
Oh The Joy of the Lord
It will be my strength
When the pressure is on
He’s making Diamonds
I won’t be afraid to shine
I won’t be afraid to shine
I won’t be afraid to shine
‘Cuz He’s making diamonds out of dust
Making diamonds out of us