Sometimes I cry

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Being a parent is hard. You worry about things you never thought you’d have to. The worries that come when a child is put in your care can be so overwhelming. Add special needs to the equation and the worries can make you feel like you are drowning. I came across this beautiful post from Scary Mommy. I feel like it was right on. Before you read, get some tissues.

Sometimes I cry for you, little one.

Sometimes I cry because the world is so big and you’re so small, and I worry—Oh, do I worry—about your smallness in this big world.

Sometimes I cry because you’re so big and I’m so small, and the bigger you get to me, the smaller I get to you, and I worry—Lord, how I worry—about my smallness in your big world.

Sometimes I cry because this love is too big and my heart is too small, and a bursting heart feels—strangely, painfully—an awful lot like a breaking one.

Sometimes I cry because I’m overwhelmed by the beauty of you.

Sometimes I cry because I’m overwhelmed by the weight of you.

Sometimes I cry because in the process of gaining you, I gave up a version of me, and though I wouldn’t change that even if I could, sometimes I miss me desperately.

Sometimes I cry because your skin is so soft, and your eyes are so bright, and your soul is so new, and your heart is so open, and I’m sad. I’m sad that your innocence will crumble from experiences brutal and necessary, because you are as painfully human as the rest of us.

Sometimes I cry because you need help in ways that I can’t help you, and helplessness as a parent feels—strangely, surprisingly—an awful lot like sheer terror.

Sometimes I cry because as a mother I have no choice but to put on my big-girl panties every day, and both of those things—having no choice and big-girl panties—can be really, really uncomfortable.

Sometimes I cry because I am so unbelievably tired—not sleepy, but tired—that I can’t do anything else.

Sometimes I cry because I hear God in your giggles.

Sometimes I cry because your very existence evokes a joy so profound that smiles and laughter can’t quite reach it.

Sometimes I cry because this blessing is so big and my cup is so small and the overflow has to go somewhere.

Sometimes I cry because all of these things—the love, the worry, the sadness, the beauty, the bursting, the big-girl panties, the blessing—it’s all too much to take. Just too, too much.

So sometimes I cry for you. And for me. And for this big world. And for a thousand other terrible, wonderful, desperate, beautiful reasons that you won’t understand until you’re a parent.

Sometimes I cry for you, little one. Big, cleansing tears.

-Post originally at Scary Mommy, check them out for more.

The Power in the Name of Jesus

Things have been difficult lately to say the least. I’ll write a post later with most recent updates on Sweet Baby. I came across this beautifully encouraging post by Kelly Langston at Not Alone. Post and photo courtesy of Not Alone. I hope you are encouraged today.

Being a special needs parent is like climbing a great mountain. Let’s face it, sometimes it’s downright overwhelming.

When the journey begins—and you received that unexpected diagnosis—you suddenly find yourself at the base of a great mountain. The scale of this mountain is enormous and the trail that leads to the summit is rocky at best. Standing at its base looking upward, thoughts of self-doubt begin to flood your mind.

Do I have the strength to make the journey?

When we are filled with disparaging thoughts— the ones that come frequently when we consider the weight of caring for a child with special needs—we can find strength in one name:

Jesus.

We can become so overwhelmed that we are paralyzed with dread. Times can be so hard that we don’t have the words to express the pain or call to someone for help. In times like that, remember that name.

Somewhere today, a doctor is giving parents news about their child … and their lives will never be the same.

Jesus.

In a home somewhere, there is a marriage under stress:

Jesus.

Right now, a mother longs for her little one to get an appropriate education … but doesn’t know where to go:

Jesus.

This evening, a dad is comforting a child who has been teased and ridiculed:

Jesus.

Somewhere a family has no idea how they will be able to pay for therapies this month:

Jesus.

Don’t doubt the power in this name: Jesus. He is our Advocate. Our Author and Finisher. He gives us a New Song. His name alone makes the darkness flee. He looses chains and sets us free. In that name is the power over death itself.

If you are feeling weary and overwhelmed, just remember that name. I promise you, it is so much more than enough.

I can do all things through Christ who strengthens me.

– Philippians 4:13

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Anger

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These past few weeks I’ve really struggled with anger & bitterness. It’s easy to be angry about our situation, as we long to understand why. But what I do not doubt, is God’s love or His majesty and power. I just doubt His methods. I can’t understand how this could be best for Sweet Baby or for our family. I know some have said this is a great witness, but at times I wish God would use someone else to witness. I just want to be normal. But obviously that isn’t part of His plan right now. I know God is here, but that doesn’t take away the pain, fear, loneliness and discouragement. That’s when I go (and sometimes force myself) to the Word of God. I always find encouragement and peace. And I cling to it as if it were my last breathe.

~Our Sweet Life~

” I will meditate on the glorious splendor of Your majesty, and on Your wondrous works.”
Psalm 145:5
~

Rest in His hands

Sweet Baby’s struggles lately have been hitting my husband and me hard. Now that our baby is two years and 3 months, it is more obvious to people he’s far behind. It doesn’t help that he is very tall for his age as well. Now when people meet him and see he’s not talking, not walking on his own, or feeding himself; I can’t help but feel the judgmental stares. Most people who meet our boy love him right away, but I still see the curiosity in their eyes. It’s like they are trying to figure him out. It really bothers me. Not to mention we have hit with terrible twos with a vengeance. The tantrums, the mood swings it’s enough to wear you out by 9am. His therapists have tried encouraging me by saying its a very good sign cognitively that he is doing this. I’ll keep trying to remind myself of that during his next screaming fit. It’s been awhile since I’ve updated you on Sweet Baby. And you’ll see why, things have been …. crazy to say the least.

The week before thanksgiving, Sweet Baby started having seizures. It was the scariest time of my life. He had 6 or 7 in a 4 day span. That week was hell on earth. I feel I have not been able to relax since. Every time he’s suddenly quite, or laying still on the floor, my heart drops and I go running to him. The doctor put him on Keppra and it’s been controlling his seizures, until recently. Not to mention how it’s affected his personality, making him aggressive & agitated. For the last month or so, he’s been having breakthrough seizures frequently throughout the day. We are currently trying to find a new medication for him. Reading all the side effects make me sick to my stomach. How does a mother choose between medicines that can severely affect his personality or one that is not good for his well being. Well we had picked a new one yesterday but when I was informed of the price, $250 for a month supply, we are back to square one. I just want to burry my head in the sand and not think about it. But my Sweet Baby is counting on me to be his advocate. He had an EEG done, it was abnormal & shows he has a tendency for seizures.

Christmas we spent at the hospital because Sweet Baby had influenza. He was dehydrated and not getting enough oxygen. They kept us overnight because they wanted to monitor his oxygen levels & to watch for seizures. The hubby slept on what they call a bed & Sweet Baby and I slept in the recliner. He wouldn’t sleep in the crib but would sleep on my chest. He needed his mommy, it’s ok because I needed him too.

About a month ago he had his surgery to correct his strabismus, and he was a fighter! I’m so proud of him. He handled recovery like a pro. It’s amazing the progress we have seen already. He’s so close to walking independently, it could be any day. He makes eye contact now, and it melts my heart every time.

He had an MRI back in January and it was abnormal. It showed T2 hyperintensities in periventricular white matter and a thinning of the corpus callosum (it’s in the center of your brain and it is how the left and right side of your brain communicates). Which in a nut shell means: he has less nerves in his corpus callosum than you and I do. So he needs longer time to process information. Having a thinned corpus callosum can cause global delays.

A few weeks ago we took him to the geneticist to look further into his delays. We have a plan of blood work (still waiting to see if insurance will cover the labs) and they want to do a spinal tap if blood work comes back negative.

With everything going on lately, I have been feeling lost. In the dark moments, when I’ve quietly cried myself to sleep, I’ve wondered if God has forgotten or forsaken us. In my new Bible study, Unlocking the Treasure (which is amazing and I’ll talk about more later), we studied Isaiah 49:13-16a.
“Sing, O heavens! Be joyful, O earth! And break out in singing, O mountains! For the LORD has comforted His people. And will have mercy on His afflicted. But Zion said, ‘The LORD has forsaken me, And my Lord has forgotten me.’ Can a woman forget her nursing child, And not have compassion on the son of her womb? Surely, they may forget, Yet I will not forget you. See, I have inscribed you on the palms of My hands”

I find this verse encouraging. When I see the word afflicted, I think of Sweet Baby and his many afflictions at such a young age. It breaks my heart he has to fight at such a young age. But then this verse points out, The LORD will have mercy or compassion on them. That’s soothing to an aching heart. When I feel like The Lord has forgotten us I must remember that His word says He will not forget me. In fact, my name and Sweet Baby’s name is inscribed or engraved on the palms of His hands. To engrave literally means “to carve; cut.” According to the thesaurus, one of the synonyms of engrave is infix. To infix means to “implant so deeply as to make change nearly impossible.” Jesus did not die for us to simply forget about us. He literally cut our names into His palms.
I need to remind myself that when I feel weary and I can’t go on, Christ is waiting for me to just simply fall into His arms. To allow Him to wrap His arms around me and find rest in His hands. The precious hands that are full of love, compassion and have our names written on them.

~Our Sweet Life~

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The “W” in Christmas

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Merry Christmas to everyone and their loved ones. Remember we’ve already received the best gift of all. A loving Savior. Thanks to all my readers. It’s a weird Christmas for us here: Sweet Baby is sick and it’s just a very laid back year. It’s kinda restful though. I hope everyone’s year is blessed. Enjoy this story by an unknown author. God bless. Jesus is the reason for the season.
~Our Sweet Life~

Each December I vowed to make Christmas a calm and peaceful experience. I had cut back on nonessential obligations: extensive card writing, endless baking, decorating, and even overspending.

Yet I still found myself exhausted, unable to fully appreciate the precious family moments, and, of course, the true meaning of Christmas.

My son, Nicholas, was in kindergarten that year. It was an exciting season for a six-year-old. For weeks, he’d been memorizing songs for his school’s Winter Pageant. I didn’t have the heart to tell him I’d be working the night of the production.

Unwilling to miss his shining moment, I spoke with his teacher who assured me there would be a dress rehearsal the morning of the presentation. All parents unable to attend that evening were welcome to come then. Fortunately, Nicholas seemed happy with the compromise. So, the morning of the dress rehearsal, I filed in ten minutes early and found a seat in the cafeteria. Around the room, I saw several other parents quietly scampering to their seats.

As I waited, the students were led into the room. Each class, accompanied by their teacher, sat cross-legged on the floor. Then each group, one by one, rose to perform their song.

Because the public school system had stopped referring to the holiday as “Christmas” I didn’t expect anything other than fun, commercial entertainment: songs about reindeer, Santa Claus, snowflakes, and good cheer. So when my son’s class rose to sing “Christmas Love” I was slightly taken aback by its bold title.

Nicholas was aglow, as were all of his classmates, who were adorned in fuzzy mittens and red sweaters, with bright stocking caps on their heads. Those in the front row, center stage, held up large letters, one by one, to spell out the title of the song. As the class would sing “C is for Christmas” a child would hold up the letter “C.” Then, “H is for Happy,” and on and on, until each child holding his portion had presented the complete message, “Christmas Love.”

The performance was going smoothly, until suddenly we noticed her: a small, quiet girl in the front row holding the letter “M” upside down. She was unaware that reversed, her letter “M” appeared as a “W.”

The audience of first- through sixth-graders snickered at this little one’s mistake. But she had no idea they were laughing at her, and she stood tall, proudly holding her “W.” Although many teachers tried to shush the children, the laughter continued until the last letter was raised, and we all saw it together.

A hush came over the audience, and eyes began to widen. In that instant, we understood the reason we were there, why we celebrated the holiday in the first place, why even in the chaos there was a purpose for our festivities.

When the last letter was held high, the message read clear: “CHRISTWAS LOVE” (“CHRIST WAS LOVE”). And I believe He still is.

3 Steps to Triumph in Your Trials

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Beautiful post from: http://www.matthewljacobson.com

At some point, the life we planned on and reality collide.

Our first several years of marriage were pretty much free of serious hardship – oh, things happened that we thought were difficult but the first real challenge? That would be the birth of our Little Sparrow.

How do you cope when the Dr. tells you your new baby is severely brain-damaged and is, in so many words, a vegetable? I kept it together while he was there but could feel a growing fire in my chest, as if the sinews of my heart were being ripped apart.

Daddy wants to protect.

Daddy wants to fight.

But, there’s not one thing Daddy can do to stop what was happening.

When the door clicked shut behind the good Dr., I turned to Lisa – my lover, my friend, and oh how we cried.

In one moment all the hopes, dreams, and aspirations for a new little life, for our little girl, vanished.

Have you been there, too? Or maybe you’re living there right now – searching for understanding and the strength to carry on in the face of deepest sorrow, or a bitter challenge.

Step 1 – Remember Job – He is God in the stillness and in the storm.

God knows every detail about you including the worst thing you are facing right now. The book of Job gives us a “peek behind the curtain.” Satan is at work – in every trauma, trouble, and trial we face – but so is God.

There’s a line in an old hymn I love that goes like this: He will sanctify to you your deepest distress. You see, God never gives you the grace for someone else’s trials but He always gives you the grace for what He calls you to walk through.

Will you receive it?

He will take that trial your Enemy meant as dark and dirty and sanctify it – literally make it clean – if you trust and yield to His light in the midst of your troubles.

In that hospital room, I knelt (fell to my knees) beside the bed, desperately grasping Lisa’s hand . . .

“Oh God, I don’t understand why our little girl has to be hurt like this . . . it makes no sense to me . . .

but I still trust you . . .

we still believe that you are good, even though we don’t see or understand.”

Then we cried a lot more.

Step 2 – Believe the Truth – God will never leave you or forsake you. Matt. 28:20 “. . . I am with you alway . . .”

He is there, in your deepest struggle. Do we truly believe what we’ve been telling everyone we believe? Do we believe that God is good in the shadows of life, or only in the sunshine?

But, don’t get the wrong idea. I still get emotional over what might have been. Sorry – maybe a super Christian would just forge ahead in total strength and conviction, but this Daddy?

The other day when some kids were visiting, running all over the yard and our Little Sparrow leaned over to me and whispered in my ear, “I wish I could run,” or when I’m at some event like we were, recently, where there’s a little country dancing and I see Little Sparrow in her wheel chair, her longing eyes watching the other kids laughing and playing . . . yeah, I still cry.

My little girl’s heart was made for dancing, too.

Step 3 – Hold fast to your hope – Romans 15:13 “Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.”

And, God knows that. He created her for His glory which is why following the Marriage Supper of The Lamb, I’m thinking there’s going to be a big dance and I’m pretty sure I’ll have to stand in line for a dance with Little Sparrow . . . just behind Jesus,

Welcome Little Sparrow . . . may I have this dance.

Matthew Jacobson
http://www.matthewljacobson.com

I Still Would Have Chosen You

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Last week was the hardest of my life with Sweet Baby. Last week he had his first seizure and continued for the rest of the week. They have him on anti-seizure meds that have helped so far. We are on day 4 seizure free! Praise God. I found this beautiful poem that I cried when I read it. It’s so beautiful and true. It’s also a great reminder. I would never trade Sweet Baby for anything. He is my world. He has given my life a purpose I never thought it would have. I want to inspire people. I want someone to look at me and say, “Because of you I didn’t give up.” Of course it was only by the strength of Christ that I haven’t given up. And I never will give up on my Sweet Baby.

I Still Would Have Chosen You 
 
If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.
If God had told me, “This soul would one day need extra care and needs” , I still would have chosen you.
If He had told me, “This soul may make your heart bleed” , I still would have chosen you.
If He had told me, “This soul would make you question the depth of your faith” , I still would have chosen you.
If He had told me, “This soul would make tears flow from your eyes that could fill a river” , I still would have chosen you.
If He had told me, “This soul may one day make you witness overbearing suffering” I still would have chosen you.
If He told me, “All that you know to be normal would drastically change” , I still would have chosen you.
Of course, even though I would have chosen you, I know it was God who chose me for you.
-Terry Banish

Finding My Ministry in the Home

I listen a lot to gracefm, I love the pastors and they preach the Word of God! I always hear them talking about how we have to go out the preach the gospel with the people we see in day-to-day life. It always makes me feel guilty. When I worked I was able to be an example (I hope) of Christ. But now I’m home. Who am I supposed to witness to? Then I realized the Sweet Baby is my ministry. He is who I’m supposed to be an example of Christ to. Then I read These few sheep from I Take Joy. It was like confirmation. Check out this great page! Photo and story courtesy of I Take Joy.

~Our Sweet Life~ iStock_000004268946Small

In the midst of raising little ones, a mother may find herself at odds with the future. Often, dreams and gifts are shelved in preference of little people with constant needs.

Conflict ensues between the privileged nature of motherhood and the long pause in what was a productive, somewhat predictable life.

How does a mother measure success?

Some say life is made up of defining moments. A typical Sunday revealed itself as one of those moments for me. While the speaker expounded on the life of David, I did not expect to be singled out by the Lord. No one around me suspected the arresting that took place that Sunday morning – of my mind, will and emotions – held captive by a thought which transformed into a desire to take the Lord at His word – at home.

Mothers of young children can feel overlooked in the church setting. From the pulpit we hear of mission trips, service opportunities, small groups, worship bands and all sorts of public endeavors. But with a van full of car seats and nap times looming – I was in no place to serve in public. I knew it – but needed affirmation from above.

The speaker described in vivid detail the life of David. Not David the king, but David the shepherd. As the sermon unfolded – time stood still for me. I felt all alone – in a good way – personalizing the story.

David’s brothers mocked him for having such a small job – tending to his ‘few sheep’. They were fighting the big battles, had the upfront positions and represented little brother to the world. David had no voice for public ears. His thoughts were relegated to the mound of sheep off the beaten path of real life and no one expected more of him.

But David sought the Lord in his isolation. He used the years of serving and protecting his ‘few sheep’ as an opportunity to know God. He did have a voice – and an audience of ONE. On the backside of a mountain David learned to pray – not in the, ‘I’m asking for things’ kind of praying but in the, ‘Lord, I want to know your more ‘ fashion. He turned his thoughts into songs (Psalms) which soothed the sheep and brought heaven to earth.

David fought off lions and bears – archenemies poised to steal, kill and destroy his flock. His sheep knew his voice and he knew their limitations.

While David was being faithful in the little – God was training his hands for war and capturing the shepherd’s heart for His own. Culture would eventually be shaped and history rearranged by the actions of this unassuming sheep herder.

I remember the Sunday service, like it was yesterday. I left church with my mound of notes – and mulled over the facts, chewing on the hard truths of God’s ways.

Little becomes much – Up is down – The backside of the mountain is in the presence of the King.

My eyes were opened to the possibilities. What if?

What if I embraced this role of mom/shepherd tending to my ‘few sheep’ with everything I had? What if I learned to know God during these busy, quiet years? What if  I was all right with being misrepresented without a voice?

Fast forward a decade, or two, and this shepherd/mom is in a whole, new place. The little lambs are strapping men and lovely ladies. Some days I long for the season when life was simple, kids were little and God was so near.

I’m  thankful for a church leader who ministered the word of God in a timely fashion – fitly spoken for my hungry heart in need of a defining moment.

Young mom – use these tender days to watch over your little ones. Learn the dynamics of spiritual warfare by protecting them and get to know your God while in the quiet place on the backside of the world.

Psalm 23

The Lord is my shepherd, I lack nothing.
    He makes me lie down in green pastures,
he leads me beside quiet waters,
    he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
 Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

– See more at: http://www.itakejoy.com/these-few-sheep/#sthash.9YqJioKi.0rrvXZde.dpuf

Lighting a Candle for those Born into Heaven

For those who follow me know a dear friend of mine has had several babies born into heaven. Many women (probably more than we think) have had miscarriages or stillborn. My aunt had a stillborn at full term; the sweet baby got tangled in the cord. Last month I had a baby born into heaven. I didn’t know I was pregnant until it was too late and I was already losing the baby. I was maybe 4 weeks along, so I didn’t have time to really grow an attachment. But since today is national infant loss day, I find myself thinking about the baby that would be growing inside my belly. I do know my due date would’ve been June 8, 2014. I find peace in knowing that my little angel is in heaven being taken care of by Jesus. He or She is much better off there then in this broken world. But many woman’s experiences have been much more heart wrenching and for that I’m sorry. I offer you a cyber hug.  In honor of National Infant Loss Day I’m lighting a candle for my angel and to support all mommies who have lost their angels.

From The Humbled Homemaker I found a letter for the mom whose baby was born into heaven. Check out The Humbled Homemaker‘s site, this letter is part of a 31 Days of Dear Mom Letters series. I hope this post ministers to you. Letter and all photos courtesy of The Humbled Homemaker.

~Our Sweet LIfe~

Dear Mom Whose Baby Was Born Into Heaven (via Miscarriage or Stillbirth)

Dear Mom whose baby was born into Heaven {via miscarriage or stillbirth},

First of all, I want you to know: You are a mother. Do not let anyone try to convince you that you are not.

I have not experienced the pain of losing a baby. I have not even had a miscarriage.

And sometimes people like me don’t know how to talk to people like you.

Should we mention the baby? Should we pretend it didn’t happen? Should we ask how you (the mother) are doing?

And when you see people like me post pictures of our babies on Facebook or even lament the terrible 2s, you’re probably thinking: “If only, if only I had that opportunity. If only I had my baby back…I would take 100 years of terrible 2s.”

I’m sorry, dear Mama. I’m sorry those of us who haven’t experienced your pain just don’t get it.

It’s true. We absolutely, positively do not know the pain you have endured. We do not know, so we should not pretend that we do! Everyone has trials in this life, but yours…yours…to have held the hope of a child without actually getting to hold that child in your arms…

I can only imagine it must be excruciating.

I  remember it like it was yesterday even though it was almost 5 years ago. My husband and I were in missionary training with several other missionary families, and our dearest friends in our shared apartment were halfway through their pregnancy with their 4th baby.

The mama was glowing in eager expectation of the baby she thought may be her first son. As my firstborn was only about 7 months old, we gleefully discussed all things baby together. Diapering, feeding, baby clothes…it was all so exciting.

I remember the day she told me it was strange to her that she hadn’t felt the baby move. At this point in her other pregnancies her babies had been moving. She worried something might be wrong.

But naive as I was, I thought she was fine.

And then I received the phone call. She had gone for her prenatal visit alone while her husband attended classes. She couldn’t get in touch with him. So she called me.

The baby was gone.

The breath knocked out of her already was now knocked out of me. My friend–my dear, dear friend…My friend whose dear baby we had all touched on her belly…

Her grief was overwhelming. And all of us missionary families mourned with her. We just did not understand.

Why God, Why? It is all we could ask.

My husband and I cared for her three girls and wondered how we would answer the questions like: “Why did God want our baby in Heaven?”

We were asking the same questions ourselves.

We still do not know the answer. My friend went on to lose several more babies. And then she had a son. Three girls and a boy.

She lost six babies in all. I will never forget one day on the phone: “Erin,” she said, “as a little girl I always wanted 10 kids. 10. Now I have them.”

She continued: “I just never realized 6 of those 10 would be born into Heaven.”

Encouragement for Mothers who Experience Loss

Image by tiwi

Dear Mom whose baby was born into Heaven,

I don’t know why. I do not have to. I am so, so sorry. I wish I could hug you right now. You are strong. The hurt you have endured is much greater than the temporary pain of childbirth.

No matter how many children you have here on earth or in Heaven, know you are a mother–to each and every one of those babies.

 

Confessions of a special needs parent: the hard things

I  came across this confessions from a special needs parent. It brought tears to my eyes. I have struggled with every single one of these! Except Sweet 1381335_511812385580777_1575068220_nBaby doesn’t have siblings or he hasn’t been diagnosed. But we still had to go through a grieving process. We had to grieve for the child we thought we’d have. We wanted to be able to fully love our Sweet Baby for who he is-flaws and all. Just the way Christ loves us. We’ve been through that process-we still have rough days when I’m like-hey?! I thought I already dealt with this. I knew parenting would be a challenge, but I never realized I’d be a parent to a sweet baby with special needs. The challenges that come with that are like a strong tidal wave coming at times we least expect it. It endangers us to give up, to lose hope. But we never will. The Lord is our strength to get through the day. You don’t know how strong you are until you fully have to rely on Jesus to give you the strength.  Like my favorite verse says: “He gives power to the weak, and to those who have no might He increases strength. Even the young men shall utterly fall, but those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:29-31

Lord increase my strength today!  I found this confession on Ellen Stumbo‘s page. I just LOVE the tag line: finding beauty in brokenness. Below is all her thoughts but anything italicized is my thoughts & expanding into my personal confessions. Please check out her page!

Confessions of a special needs parent: the hard things 

The love for our children compels us to stand strong against the tide crashing against us: the stares, the school system, the medical billing, the ignorance from other people, or the lack of support. And although we stand strong, we get tired, sometimes we are barely keeping our feet planted and we fear the tide will finally defeat us and wash us away. So we reach out and hold each others hand. Because we know together we are stronger, and because we need someone to stand with us, we cannot do this alone.

We face challenges. There are hard things about parenting children with special needs.

Social isolation:

  • We don’t want to be isolated, yet sometimes because of our children’s needs we find ourselves alone. We want friends. We need friends.
  • It’s amazing how isolated I feel despite the fact I’m NEVER alone. Between his many therapy/doctor visits and needing to do everything for Sweet Baby, I’m never really alone. Even now as I type this, it’s supposed to be Sweet Baby’s alone time to play by himself, instead I’m typing one handed because he just needed his mama. It’s also isolated not knowing anyone in the same situation-somedays I feel so utterly alone in my experiences. Thats starting to change as I meet families through the vision center we visit weekly. 

We feel like we are not doing enough:

  •  Deep down we often wonder, could I do more? Could I try harder?  Am I really doing all I can do? Sometimes, we have an overwhelming feeling of failing at everything we do because we don’t have enough time or energy to do it all. We feel like we are failing with our kids, failing at our marriage, failing at keeping a neat home, failing at our jobs.
  • Oh my if you could be in my head when these struggles come on. I constantly batter myself that I’m not doing enough. I’m not doing all his exercises that help him. It’s my fault he isn’t walking. It’s my fault he doesn’t know how to transition. It’s my fault he doesn’t hold his own bottle. I’m too lazy. I feel sometimes I’m so wrapped up in his exercises I forget to take a deep breathe and enjoy Sweet Baby. Because even though at times I feel we are stuck in the same routine-this season will too pass.

Siblings:

  • At times, we feel like we are cheating our typical children from having a normal childhood experiences. We feel torn, and we fear that our typical children will feel less important or forgotten.

Comparing our child to typical peers:

  • We try not to compare, but sometimes it’s hard not to notice how different our children are to their typical peers.
  • This one is in my hardest. I call it my struggle with the jealousy monster. Me comparing Sweet Baby also causes me to isolate myself. When its just us-I don’t realize what I’m ‘missing out’ on. 

Lack of communication:

  • It is hard when you cannot understand your child because of a speech delay,  it can be frustrating when you cannot have a conversation with your own child. The lack of communication also affects other social interactions and the forming of friendships. It is especially hard when your child is non-verbal.
  • Right now Sweet Baby is non-verbal. it’s a daily struggle trying to figure out what he wants. You can see he wants so badly to be able to tell us. As a mother, not being able to help her baby is like a knife in my heart. It’s the hardest struggle. The jealousy monster comes out with this aspect too. Seeing other moms being able to have a ‘conversation’ with their little ones. Seeing the littles ones going up to their mommys and just plain out saying, “I want . . .” To heard words come out of their little mouths instead of grunts and screams of frustration. We are working on a picture schedule and sign to bridge the communication gap, but he still only does his 2 signs. He understand more signs but he only signs eat/drink and more, which are very important. 

Others:

  • It is tiresome when other people throw judgment at us.
  • It is insulting when people hint they could do better and that our children’s behaviors are a result of poor parenting.
  • The constant battle with schools, doctors, insurance companies, etc, is exhausting.
  • Some people don’t even give our kids a chance.

The future:

  • We worry about the unknown, what the future holds. What will happen to our kids when we are not around? And how do we let go?
  • I don’t even want to think about the future because I don’t know what the future holds and honestly I don’t need to know. I just know the Lord has Sweet Baby in His hands and He will take care of him. When fears of the future loom: fears of will we have more kids? What will happen if we have more? Fear of what if something happens to me or my husband. I take a deep breathe and remember: “Be still and know that I am God.” Psalm 46:10

Dealing with the diagnosis:

  • When we fist received our child’s diagnosis, we had to grieve the loss of the child we thought we would have. Once we deal with the diagnosis, we still have to deal with the everyday realities of our children’s’ needs.

We want you to recognize the hard things about parenting a child with special needs, we hope that someday you will understand what it is like to walk in our shoes. Ultimately, we want you to stand with us, because when you do, you will see that we are courageous, funny, compassionate, resilient, brave, flexible, forgiving, generous, and so full of love. And we want to share that with you too.

~   ~

These thoughts come from the dark moments of doubt and fear. Those moments when I forget that I know the Creator of heaven and earth and He has a plan for me. I need to remind myself: “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6  Soon I will make a list of the special things of being a special needs parent.  Because there is such a beauty and peace about Sweet Baby, I want you to know that about him as well.

~Our Sweet Life~

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