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.

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Amsterdam International

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One day, last year, I was struggling with raising Sweet Baby and his physical therapist gave me a poem. It’s called welcome to Holland & I shared it then. Please read or re-read this poem. While looking through Pinterest I found this poem. Dana wrote the poem Amsterdam International and she felt, the raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If She had written “Welcome to Holland”, she would have included the terrible entry time. Grab a tissue, I read it through tears. Some days I feel like we are trying to get out of the airport.

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything—you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization—your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up—you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious—how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

If you would like to reach out to Dana here is her email: uncommonfeedback@gmail.com

~Our Sweet Life~

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
~

I Will Bring You Back from Your Captivity

I’m so glad to have found an amazing Bible Study: Unlocking the Treasure; A Bible Study for Moms Entrusted with Special-Needs Children by Bev Roozeboom. This journey has been difficult and even more so feeling like my hubby and I are the only ones on the journey. There is no one at our church struggling as we are. None of my high school girl friends even have kids. And all my mommy friends, even though they are amazing and are a huge support system; have all typical children. I’ve been able to connect with a mom whose daughter has Angelmans syndrome, but we don’t get to see each other as often as we’d like. Our struggles are hard-but we don’t have it any harder than anyone else. Our struggles are all unique.

One night I just needed some encouragement and I wanted a Bible study for moms in my situation. I’m so glad the Lord lead me to this book. It brings me to tears each entry. Bringing up thoughts and feelings I didn’t realize I struggled with. It brings up issues I thought I had dealt with, but truly I am still holding onto. Each entry is exactly what I need for that day. Even though this books says it’s from moms of special-needs children, I truly think any mom can read it. All may not pertain to them, but I feel being a mom is difficult and no matter typical child or not, it never goes the way we imagined it. Remember while being pregnant how we dreamed of what it’d be like. Is it going how you dreamed of it? Todays topic was A Hope and a Future. I didn’t realize how at times I feel like I’m living in captivity. Now since Sweet Baby has no diagnosis, we don’t know what his future looks like. As he gets older he may catch up, and only those close to us would know how hard we struggled. Or he may always be our Sweet Baby. The uncertainty can sometimes be too much to swallow. I’d like to share from today’s entry. Everything in italic is from the book, I’ll be mixing in a few of my own thoughts/feelings.

There are times when I feel as though our son is holding us hostage! His demands, at times, are so great and the burden is so exhausting. When we look ahead, we don’t see that its going to change anytime soon. Even though Sweet Baby seems so close to walking independently, someday’s I still feel like we will never get there. Because I feel like we’ve been ‘so close’ for so long now. My biggest fear right now, is he is approaching the age for preschool. When I think of it, I go into a massive panic attack. Will he be moving out of our home after highschool? I’m not sure if he’d be able to get a job. Will we always be supporting him (financially, emotionally and in other ways) well into his adulthoodToday, let’s look at a familiar passage of Scripture and allow God’s Word to break some chains!

“For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you, declares the LORD and I will bring you back from captivity.” Jeremiah 29;11-14

If we back up a few verses and read the first part of Jeremiah 29 (Jeremiah 29:4-7) the Lord instructs His children to go on with their lives, even during difficult times of trials. Dear sister, God’s plans will most certainly prosper you. It’s just that His plans often look different from our plans, but God really knows what He’s doing! He has the power to take this difficult challenge and turn it into His calling for your life. 

I choose not to stop living! It’s important to keep Christ my center and seek Him with my whole heart; step into each day with the hope and confidence that God will use me in my current circumstances. Go buy this Bible study ASAP, it won’t disappoint, I promise.

~Our Sweet Life~

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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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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

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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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 1234387_10201189676478637_1953455665_nalter 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.1175388_500893776672638_861680460_n
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

 

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.

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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~