What They Didn’t Tell Me

I’ve been following some great parent support groups on Facebook. A few of them are for Autistic families. Sweet Baby has not been diagnosed with Autism but their words of encouragement touch my heart. Below are some poems I’ve found on these pages and well as a sensory processing disorder support page. Each one brings tears to my eyes and I relate to each in a different way. I’ve changed them just a little bit to fit our situation. I hope if your a mama of a special needs child I hope these poems bring comfort to you the way they did me. I recently wrote a poem myself and will be posting it soon. 

“Here are some things you will not find in your research on autism special needs.

You will not learn how this diagnosis will affect your marriage or other members of your family. You will not be told how it may fundamentally alter your perceptions of what is “normal,” how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with autism may cause you to feel things you never dreamed possible. You may know moments of joy and moments of despair you could not have imagined. You may find yourself going to untold lengths in the hope of helping your child. You may feel distracted, unable to concentrate. Your work and career may suffer. You may learn what it is to be sleep deprived. You will come to know what it means to feel desperation. You will know sorrow in a way no one can prepare you for. You will know happiness in a way no one can prepare you for. Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it. You may contemplate doing things you would have scoffed at before your child was diagnosed. You may find yourself trying things that defy logic and have no medical basis. You may listen to implausible, anecdotal stories and think — we will try that next. You may dream your child is speaking to you in full, complex, beautifully self aware and revealing sentences. You may wake from those dreams believing for a few seconds they were real and not a dream. You will pray that you might dream again. You will welcome sleep, as you never believed possible. You may ache with sadness because your child is crying and in pain and your presence brings them no solace. That ache may become unbearable when your child hits themselves in the face, bites their own arm or hand, punches their own legs or stomach. You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted. You may feel the exquisite joy from having your child reach for you, ask for you or look at you. You may know the joy that comes from seeing your child work so hard at something that does not come easily to them. You may celebrate when they use the bathroom unaided, drink from a cup, sleep for more than a few hours without waking you, try a new food or simply acknowledge your presence. You may feel a gratitude you would not have believed possible. You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is. You will know what it is to appreciate commonplace things — eye contact, the correct use of the word “me,” “you” and “I,” physical contact initiated by your child, a word, any word spoken or a smile.

You will feel a fierce love for your child that seems to come from a place that is not of this world. You will know what it is to love unconditionally and you will understand what that really means.”

~ Ariane Zurcher

 

“Dear Mommy, don’t you cry now and Daddy, don’t you weep.
I want to whisper in your ear before I go to sleep.

I know that when I came here, I seemed perfect in every way
And you were so proud Daddy, when you held me on that day.

And Mommy when you kissed me and wrapped me up so tight,
I felt as if I belonged here, and everything was right

When things got really scary, and I began to slip away
I saw your face, dear Mommy as you knelt by me to pray.

And Daddy, I always notice when you wipe away a tear,
or watch the other little boys as they run and laugh and cheer.

I may not be able to tell you how much I love you so,
or even show you how I feel and what I really know.

But when you hold me Mommy, at night when all is still
I feel your dear heart beating, and I know that all is well.

And Daddy when you take me to the park, to run and play
I know that you still love me, though the word’s I cannot say.

So Daddy don’t you cry now, and Mommy don’t you weep,
I want to tell you something before I go to sleep.

I may be sort of different, and you may not understand
I know that I am not that child that you and Daddy planned

But I love you both so very much, and I know you love me too
And one day when this life is done, you will feel my love for you.

I know the future is unknown, and you will always have to be
The ones who love and listen and take good care of me.

The road we walk is rough sometimes, and you cry a lot of tears,
but one day we will turn and laugh as we look back over the years.

So Mommy don’t you cry, now and Daddy please don’t weep
I want to say, I love you before I go to sleep.”

~ Susan Meyer

“The world i once knew had changed forever,
For you my  girl son your extra clever,
Words so unclear you dont always speak,
Sometimes its to much mummy feels to weak.

All the hard work and effort your worth,
For you i’d move heaven and the earth,
I dont mean to get angry or even get mad,
But sometimes its hard and mummy gets sad.

Its hard to know they judge you and me,
Before they understand or even try to see, 
They dont see the struggle we go through each day,
Or the feelings you must have i want to take away.

Mummy gets scared when i dont know what to do,
But please Haylee Sweet Baby know that mummy loves you,
When your sad and angry even when you cry,
I only get sad and angry because i dont know why.

Haylee Sweet Baby I wish I could make it easier for you,
But its so dam hard mummy has no clue,
I try my best to help and understand,
Remember i love you and will always give you a hand.”

~Unknown

 

Less Judging More Love

Found this while scrolling through facebook. It works perfectly for how often we feel misunderstood with all of Sweet Baby’s special needs.  How can you judge less and love more? Tell me below in the comments. 

“I’ve been thinking about how easy it is to misunderstand and judge others. 
Lately I’ve been aware of some of the unspoken yardsticks by which I measure others, like: A good mom doesn’t let her kids watch too much TV and doesn’t scream at her kids.

But then there’s Jesus who turns these notions upside down when He says, “The greatest of these is love.” What if, instead of self-righteousness, we offered love? It would sound like this: “Being a mom can be exhausting. Do you want me to come over and watch your kids so you can have a break?”

The Bible reminds me that I’m supposed to love, not judge and God’s challenging me to examine my thoughts of others. He wants us to come alongside others and help carry their burdens, rather than adding to them with criticism.

From Proverbs 31 Ministries “Everyday Life” Radio Program withLysa TerKeurst. For more, visit http://proverbs31.org/blog/loving-instead-of-judging/

~Our Sweet Life~

He Sees You

This was beautiful and from one of the blogs I follow, ...and a sprinkle of love. Check it out, for more encouraging posts from Rebecca.

As you begin a new week and you’re feeling the days are mundane and daunting remember…..

To the tired mama’s who watched the sun rise trying to rock a baby back to sleep-He sees you.

To the husband who works tirelessly to support his family but feels unappreciated at home-He sees you.

For the toilet, tub, and floor that need to be cleaned again-He sees you.

For the person sitting in the exam room wondering how they are going to handle this diagnosis-He sees you.

To the teen mom who is watching all her friends pack and leave for college-He sees you.

For the weary parents who are praying for a miracle-He sees you.

For weary children struggling, caring for their aging parents while caring for their own children-he sees you.

For the single moms wondering how to make your paycheck stretch even further-He sees you.

To those who feel weary, tired, and broken-He sees you.

Our Heavenly Father sees and loves His children. You’re not alone, Deuteronomy 31:8 says, “The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged”. God is there, with you. The enemy’s whispers will fill you with doubt and his lies will make you feel like a failure but stay strong and courageous. The Lord is your peace (John 14:27) ,stronghold (Psalm 27:1), and your comforter (2 Corinthians 1:3-4).

~Our Sweet Life~

Pray for tragedy in Romania

I go to church at my local Calvary Chapel. This came in my email today and I believe it is important we pray for Lidia and this church family. My heart just breaks but I find peace knowing they are with our Heavenly Father. Thank you!

~Our Sweet Life~

Please stand with me in prayer for Lidia Blaga, and the church body at Calvary Chapel Bistrita in Romania, a church that we started shortly after the Berlin Wall fell.  Lidia’s husband, Assistant Pastor Adi Blaga and Timotei, their nine-year-old son, were kidnapped and murdered on August 5.  Brian Fouts, Pastor of Calvary Chapel Bistrita, is working tirelessly with the police to provide them with all of the information to do a complete investigation into who may have done this and why.  No conclusions have come to light yet.

The church family, community, and their friends and loved ones in Bistrita are in deep shock and mourning.  Pastor Brian said that Adi was, “One of the most Godly men I have ever had the honor to serve with.”  And for me personally, Adi was one of the most sincere servants of Christ I have known in my entire life.  The loss of such a man and his beautiful son has ripped our hearts in two.  We can be comforted knowing that Adi and Timotei ran their race, lived and walked with God, and have now heard those beautiful words, “Well done my good and faithful servants; enter into your rest.”  But there are many hurting souls left behind.  We would also appreciate prayers for Adi’s mother who lost a daughter to a tragic accident as well.

Pastor Brian has great expectation on how the Lord will use this for His glory, and to fulfill His promise, especially in this community. This was the largest attended funeral ever held in this city.  As fellow Calvary Chapels, I would like to see us collectively do our best for Lidia, Adi’s wife, to make sure that she receives both the emotional and financial support that she needs right now.  Please consider doing something for Lidia.  Consider having your church family pray for her, write short letters of encouragement, or do something financially to help her face her future alone.  If you would like to help financially, you can do so online at www.chapelmissions.org, or contact our office administrator, Jessica Durham at 208-321-7440 or via email atjdurham@ccboise.org for more details.

I hope this a reminder for all of us of the vulnerability that our missionaries are facing throughout the world.  Some are currently in prison, like Saeed Abedini in Iran; churches in India are being attacked, and many who are serving in Mexico live in constant threat of violence from the drug cartels.

We, along with many others around the world, thank you for your prayers that enrich the Spiritual support that we have found over the years as part of the Calvary Chapel family.

In His Grace,

Pastor Bob Caldwell

Calvary Chapel Boise

James 5:16

The effective, fervent prayer of a righteous man avails much.

Raising Christ-followers

It’s always refreshing to see encouraging status’ on facebook. Because it seems its mostly used to complain about life. I’m guilty of this at times as well. But I’ve started following a community page that shares biblical truth that leads us to know Jesus is more than enough. This was her status yesterday and I wanted to share it with you all. This is a great reminder. It’s easy to get caught up in the daily chores, cooking dinner and with my life, all of Sweet Baby’s therapy & exercises. It’s easy to fall into the routine but remember that we are raising Christ-followers. 

“Today I can be a woman who remembers I’m raising Christ-followers. That … THAT is amazing! When I feel unnoticed, unappreciated and completely uninspired in the daily grind as a mom, I’ll lift my focus off the laundry baskets, scattered Legos and dolls, and sticky Cheerios under the table … and look to Jesus.

As He leads me, I’ll lead my kids with patience, love and perseverance. And remember I’m building His Kingdom by investing in my children. I can take joy in this season because Jesus is More Than Enough to give me hope and delight.”

 

Enjoy this day with your beautiful gifts from heaven, your children. And when the heaviness of motherhood seems too much, look to Jesus, take a deep breathe and remember: we are raising Christ-followers.

~Our Sweet Life~

 

Missing Out

Today I took Sweet Baby to one of those indoor play places. It was full of toys and colorful mats and slides. I was so excited to go. Today they were offering a sensory play class. I was a little on edge about it just because Sweet Baby has a fine line: enjoying stimulation and getting over stimulated. And you can cross that line quickly. I called ahead last night asking about the class. It was the first time I referred to him as special needs (moms heart breaks)… One of my concerns was paying $15 for something we’d end up possibly leaving thirty minutes in. She said if we came, she’d work something out.

We pulled up this morning and I was kinda relieved we were the only ones there. Less chance of him getting over stimulated so quickly. I was excited to experience this with Sweet Baby. The sensory play class was in a room where they had bins full of beans, different textured objects and they had bubbles. He didn’t enjoy it. He cried and would throw himself back. He enjoyed the bubbles for a little bit-but quickly didn’t care. I was starting to feel awkward since we were the only ones there. I noticed the big room full of colorful mats and toys. Sweet Baby and I moved the party into there. He had fun for a little bit in the hammock but the rest of the hour he fussed as I took him around the room to try to find a toy that he’d want to play with. My heart started breaking as I thought of if things where different. If things were different he’d be running around the room, grabbing toys, playing with them. I’d have to chase after him. I desire so deeply to have to be chasing after him. Tears stung my eyes and I got our stuff together to go. The room started filling up with kids and their moms. Big grins as they get to play together. I don’t understand why God has chosen this path for us. I love Sweet Baby, but I felt jealously filling my heart. It took over like weed, growing so big I struggle to breathe. I wanted what they had so bad is hurt. Usually when I get jealous I get mad at myself. Sweet Baby is just so precious and amazing and I know I shouldn’t be jealous what I don’t have. I don’t want him to feel unworthy.

The lady was very kind to not make us pay. As I walked to my car I just felt this weight on my heart. I’m sad that he is missing out on so much. It’s not just selfish me (even though sometimes it is), but I want him to enjoy things the way other kids do. I want him to be able to crawl/walk away instead of throwing himself back and wiggling away. Tears streamed steadily down my face on our drive home. Feelings of never wanting to do stuff like this again filled my heart. In the end, I usually end up feeling like we are missing out on something. When it’s just us at home I don’t feel like we are missing out.

~Our Sweet Life~

Sometimes Tears Are The Best Healers.

Tears are the best healers. Isn’t that sometimes the truth? I’ve always hated crying. In my eyes it was weakness. I didn’t like people seeing that I hurt or that I was vulnerable.  Once I got pregnant I turned into a ‘hot mess.’ Now after having my son I can cry at the drop of a hat. I usually am fighting back tears as I watch sappy movie/tv shows or even commercials! But I’ve learned when I hold them in, I’m not allowing my heart to feel the pain. And sometimes we need to feel that so we can heal. As I’ve written previously about my friend who has had several miscarriages. Since then, I like to follow blogs/facebooks on people who have as well, so that maybe I can get a glimpse into her pain, so maybe I can say something to help. I always feel useless having never been through the experience myself. I love how she ends it with, “I’ve learned that God doesn’t protect me from pain, but He walks right by my side as I struggle through it. And I’m amazed at His grace. “ I came across this blog and thought I’d share. Natural Fertility and Wellness. If your struggling to conceive or infertility-check them out. Photo courtesy of the website.

“It was only a photograph.

Our church had long ago decided to create a pictorial directory, updated every five years, to keep track of the growing families in our community.

And it was only a photograph.

At least, that’s what I kept telling myself as we sat in the narrow hallway awaiting our turn.

Five years before I had cried over the picture that showed my face with a pasted on grin covering my quiet fight against the heartache of infertility. The me that had been taking chemically-made hormones and was miserable and depressed.

But I had moved on. I had faced my infertility with the most grace that I could muster, written down my story in a book, traveled to half a dozen churches to share my story in person, and testified boldly about God’s presence in the midst of my pain.

I walked into the hallway, five years later, with confidence. After all, it was only a photograph.

But somewhere between the hallway and the moment when our pictures came on the screen, it stopped being just a photograph. It became a witness to my years of suffering and the deep emotional scars that marked my life.

It had never occurred to me that I would still be childless when this next directory came out. It never occurred to me that I would still be fighting the PCOS and thyroid issues that had so sharply marked my body. It never occurred to me that I would still be staring at a photograph of just my husband and I and would still be feeling that sense of utter helplessness.

And the realization left me breathless with sorrow.

 

We left the church and my husband received a phone call. I quietly told him that I would start walking, would he please pick me up when he was finished? He nodded and I quickly made my way across the parking lot, onto the street.

The sobs hit me just as I turned on the side road. I shook and walked and ran and the tears made my cheeks sting.

My husband pulled up beside me, opened the door and said, “Are you okay?” And I nodded.

And it was the truth.

Because I’m not just like I was five years ago. I’ve grown and changed and God has reached in and touched me and held me tight in my sorrow.

But I do still cry. Harsh blinding tears.

And sometimes tears are the best healers.

 

There is no way to predict when hard days will come. There is no way to avoid the mourning of loss. So I’ve learned to cry. Hard. Sometimes with hands shaking and groans of pain.

And I’ve learned to stand up afterward. To allow my husband and my church family to surround me and hold me tight.

I’ve learned that God doesn’t protect me from pain, but He walks right by my side as I struggle through it. And I’m amazed at His grace. “
Read more at Infertility, five years later.

Still in the Same Place

I heard back from the doctor about Sweet Baby. Dr. Z, like us, is extremely concerned about his vision. She said he functions like a low vision baby almost blind baby. When she said this, I wanted to shout, see! I’m not crazy. The doctors kept blowing off my concerns about his vision. Dr. Z wants us to make an appointment with his eye doctor. Maybe now with Dr. Z’s concerns she will look for something else, or she may want to do surgery sooner. Before this evaluation, we had tried to get Sweet Baby into a vision program. But he was declined because it could be corrected with surgery. But now Dr. Z wants to try again, she’s going to write a letter. So my fingers are crossed that we will get into that program. I have heard amazing things about it. 

He is significantly delayed. Developmentally he is where a four month old is some areas. In other areas he is where an eight month old is. As far as the reason’s for his delays, they are still not sure. So essentially we are still in the same place. I think one concern of hers is Fragile X Syndrome, so I think we will be going to see a Geneticists. They also are concerned, that even though he’s ears have passed tests, they are concerned he doesn’t always turn when called. So they might check his brainstem to check his cochlear, as well if his delays are cognitive. They have blood work they want to check and a urine test. They might do an MRI now as well. Waiting is the hardest part. He goes to his eye doctor in a couple of weeks. So we don’t know anything new, but I’m just ready to be out of this phase. So I’m just going to focus on enjoying our Sweet Baby. He is a happy boy, he loves to be tickled, sung to and snuggles.

When the doctor was done, she asked if I had any questions. As tears welled up, my throat tightened up, “did they have anything good to say about him?” Then all the tears that had been pent up during the 30 minute conversation streamed down my face. She said it’s encouraging he is starting to enjoy peek-a-boo.

My husband and I have peace no matter what. If they diagnose him with something or not. We know God has a plan for Sweet Baby and He loves him more than my husband and I ever could. That’s a crazy thought.

~Our Sweet Life~

Early childhood development evaluation

It’s been a whole month since I’ve written. I won’t bore you the details-but life has just been busy!

Today Sweet Baby has to go to another early childhood development evaluation. It was recommended by his pediatrician, who seems unhappy with where Sweet Baby is at. His improvements are small to others, but to us they mean the world. He’s starting to use his hands to feed himself. You have no idea-every time I see it I still want to cry (tears of joy).
So I guess we’re gonna be a room full of therapists to determine if his delays are cognitive. A part of me wants to do this. If there is something we need to find out/can do to help him, I want to know. But another part of me wants to run away & hide in a corner. I’m sick of ppl telling me something is wrong with my baby boy. Its the hardest thing to hear as a mother. Especially since i cant do a thing about it. He’s a happy boy. And at times it’s hard & overwhelming but I really wouldn’t change him. This experience is teaching me how to be a more compassionate, stronger person. So I, in return can teach him. But most importantly, this experience is teaching me to lean on God.
Having no one to lean on but God changes a person. It sure is changing me.

Personal Bible Study

Sometimes when I read the Bible just fly through it. Mostly because I’m up before Sweet Baby’s day begins and I’m exhausted. As I finish reading I wonder if I got any of it. In the front of my Bible I stumbled onto a section, how to study the Bible. I’ll share with you what I found. Taking time to study  the word of God in order that we may hear God’s voice & that we may know how to do His will and to live a better Christian life. A great scientist & medical doctor, Howard A. Kelly, was also an avid student of the Bible. He once said, “The very best way to study the Bible is simply to read it daily with close attention and with prayer to see the light that shines from its pages, to meditate upon it, and to continue to read it until somehow it works it’s self, it’s words, it’s expressions, it’s teachings, it’s habits of thought, and it’s presentation of God and His Christ into the very warp & woof of ones being.” Here are some practical suggestions for your own personal Bible time. Begin your Bible reading with prayer. Take brief notes on what you read. Keep a small notebook. Read slowly through one chapter, or perhaps two or three chapters, or perhaps just one paragraph at a time. After reading, ask yourself what this passage means. Then reread it. Another way to find the meaning in what your reading, ask yourself these questions. Not all with pertain to what your reading.

1. What is the main subject of this passage?

2. who are the persons revealed in this passage: who is speaking? about whom is he speaking? who is acting?

3. What is the key verse of this passage?

4. What does this passage teach me about the Lord Jesus Christ?

5. Does this passage portray any sin for me to confess and forsake?

6. Does this passage contain any command for me to obey?

7. Is there any promise for me to cling to?

8. Is there any instruction for me to follow?

It’s important to take time to memorize the word of God. I wish I memorized scripture more often. There are times I need His word more than my next breathe. When this world is sufficating and I feel like I’m grasping just to get along, I cling to those few verses I know. We never know when things will shift drastically we may not be able to have Bibles, we will have to cling onto what we’ve read and memorized.

Hope this helps you give structure to your personal devotion time, like it did mine. Do you have anything that helps you?