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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If I Had Known

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Found this beautiful post from Scary Mommy & I just had to share. Because I have come to find there are days when it’s so hard & overwhelming. Back before I had Sweet Baby I used to tell my friend (at the time mother of 2) how I want a baby! I can’t wait to have a baby! She’d smile and say, “having a baby is like being on a roller coaster; once your on you can’t get off.” There are the times I want to get off but then I see Sweet Baby smile, coo or reach a milestones we’ve worked so hard for; I realize I truly wouldn’t want to miss this for the world. Hold your precious ones tight. They grow so fast.

If I Had Known

If I had known what sleep deprivation really felt like before I had kids…

If I had known the full measure of bodily fluids I’d have to clean up throughout my children’s childhoods…

If I had known how much the sound of “Mama? Mama? Mama?” could grate on my last nerve after hearing it for more than a decade…

If I had known that sometimes I’d take an extra long time on the toilet, just to have a few minutes to myself…

If I had known that those few stolen toilet moments would almost always be interrupted by tiny fists knocking on the door anyway…

If I had known how often I would have to repeat the same directions and corrections over and over and over and over…

If I had known that every “expert” remedy for whining, crying, moping, disobedience, disrespect, and laziness would be completely ineffectual half the time…

If I had known that loving your children doesn’t mean liking them all the time…

If I had known that I would sometimes cry in the shower because there was no other place to vent alone…

If I had known that I’d be so “touched out” by the end of some days that the thought of getting busy with my husband would repulse me…

If I had known that I would never be able to truly, fully concentrate on anything ever again…

If I had known that it doesn’t get easier as they get older, just hard in different ways…

If I had known I would feel terrified almost every day that I am failing at motherhood in some way…

If I had known how truly unrelenting parenting was going to be…

I would have had my children anyway.

Because if I hadn’t…

I wouldn’t know how miraculous it feels to have a human being grow from a tiny speck to an entire person inside your own body.

I wouldn’t know that the smell of a newborn’s head is the best evidence that there’s a heaven.

I wouldn’t know the magic of having a baby fall asleep in your arms and never wanting to put them down.

I wouldn’t know the unmatchable thrill of watching your child walk, use the potty, ride a bike, or read a whole book for the first time.

I wouldn’t know how the sound of your child’s laughter can lighten even the heaviest of days.

I wouldn’t know how an innocent, wide-eyed stare can melt you right through the floor.

I wouldn’t know how awesome it is to witness the daily, gradual unfolding of a person you helped bring into the world.

I wouldn’t know the pride of seeing your children navigate difficult situations using the tools and qualities you’ve helped instill in them.

I wouldn’t know how much pure, unbridled joy there could be in seeing your children triumph.

I wouldn’t know how much unexpected, humbling grace there could be in the constant struggle of trying to be a better parent.

I wouldn’t know how the act of parenting your own kids can help heal your own childhood hurts.

I wouldn’t know how losing myself in motherhood would result in finding a deeper, stronger, realer version of myself.

I wouldn’t know the warm, sweet fullness of being loved as only a mother can be loved.

I wouldn’t know the raw, fierce power of loving as only a mother can love.

And I wouldn’t know that the pain and pitfalls of the path are ultimately outweighed by beauty, joy, and wonder of the journey.

If I had known what motherhood really was like, I’d have done it all over again.

(I’d just have slept more when I had the chance.)
Hhhhhh

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

 

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. 943300_538558032868229_1633940450_n

“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~

 

Breastfeeding Month!

I can’t believe I almost forgot! Today is the start of breastfeeding month! Even though my son is weaned I wanted to somehow support other moms. I’m also remembering the times I did. How I loved his milk drunk face. I loved how he’d snuggle up to my breast, completely content.  At the time I wasn’t exactly comfortable with pictures so I only have a few pictures of me nursing. I’m really sad about that, I wish I would’ve taken more. It’s nothing be ashamed of.  If you’re not breastfeeding you can support other moms too. I was at church this past Sunday, I was volunteering in nursery.  So was another mama, she also had her daughter in there. Her daughter started fussing, she picked her up and discreetly started nursing her daughter (no cover but I couldn’t see anything! she’s a mother of 5-so she’s got it figured out)  I had to say something, my heart started racing-feeling stupid. I had sworn I would next time I saw a nursing mom. I smiled and thanked her for nursing and normalizing breastfeeding. She smiled and we started talking about how amazing it is. I think I’ve made a new friend. 🙂 So I’d like to encourage you to do the same next time another mom is nursing. For those breastfeeding mama’s thank you for normalizing breastfeeding as well!!

~Our Sweet Life~

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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~

Update on Sweet Baby

Sweet Baby had his eye doctors visit last week. We really wish the doctor would have explained the plan better at the last visit, 4 months ago,what the goal of this visit was. Going into the appointment we thought we were going to get measurements to schedule a surgery. But instead we are going every four months because we are making sure he continues to use both of his eyes. We do not want him to develop a one dominant eye. It’s good he uses both eyes because that means his eyes are about  equal in strength so come the surgery he will recover quicker. So we need to take him every 4 months just to keep an ‘eye’ on them. They usually like to wait until two years of age to do the surgery, but with his delays his eyes are maybe were a 10 month old is. Which after review from his speech and language therapist she says developmentally he’s 10-12 months. So he may be closer to two and a half or three before the surgery. Surgery is the route we are going to fix his Strabismus. She said the longer we wait, the more developed his eyes are the better the outcome and recovery will be. So we are saving up to purchase an iPad because they have apps for vision exercises. This was an answer to our prayers since we had prayed for direction. We feel this is God’s way of just holding off for now. We know He has a plan for Sweet Baby and He loves Sweet Baby more than we do. We have peace about waiting-but waiting can be the hardest part.

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Breastfeeding Duties for Dads

Breastfeeding can be really lonely. Especially those late nights when its just you two. My hubby was amazing and during those first weeks or maybe months he stayed awake with me. Helped me emotionally when I’d felt exhausted and couldn’t do it anymore. He helped me when I was in such an exhausted state, “how do I want him to latch?” My hubby was so supportive of me while I nursed Sweet Baby. I remember a few times just crying go get a bottle & feed him ‘I’m done!’  (we had those sample formulas in our pantry) I’m so thankful he never gave in, he just would take screaming Sweet Baby from while I cried for a few minutes. Then as soon as I regrouped he would bring me Sweet Baby and tell me how amazing I am and I can do this. I’m so thankful to my husband for it. He fought with the crazy person I was and sometimes the mean things I said in anger and frustration (why couldn’t he lactate? I wondered sometimes). To successfully breastfeed, you need a support system. That is what our husbands are their for. So dads when she wants to give up – don’t let her. She can do it! Here are 10 duties for dads to help with breastfeeding.

 

Top Ten Breastfeeding Duties for Dad

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Happy Teething Week

Sweet Baby has broke free 3 teeth in the last 3 days. And I still see another trying to make its way through! Pat yourself on the backs moms (and dads) because your making it through. Ignore the fact that once that one makes it through there are more getting ready to make life crazy. Happy teething week everyone!

Educate Yourself First

It’s time to purchase a car. Do you just go to the dealership and see what the latest and greastest is? Whatever the salesman suggests do you just buy it on the spot not looking further into it? Making sure is it not only the right fit but a good car. Is it going to die 5 miles away from the dealership? No. The average person will do their reaserach. Most people research more into purchasing a car than looking for that person they are going to marry. It’s time to buy a house. Do you go with whatever the realtor says or do you do further research – looking into the neighborhoods you want, the value of the home, etc. Going on vacation? You look into the cheapest flights, the best hotels, best places to eat before you go. When something important is happening you do your research and educate yourself before making that next step.

Then why don’t you do the research when you walk into that doctors office for vaccinations? Why do you just automatically think what the doctors are telling you are the best for your child. Sweet Baby is not vaccinated and he may never be. It is a personal decision that our family has made. We did the research. Before you let that doctor inject your precious with heavy metals into their tiny, somedays just day old bodies, do the research. It doesn’t hurt to even just delay the shots by a few months or until they turn a year. You don’t have to do it right away. Dr. Sears also has a great book and website informing about vaccinations. They also have an alternative vaccine schedule. You don’t have to do them when the doctor suggests. You are the parent. If after doing the research and decide to vaccinate – great. But just EDUCATE yourself is all I ask. Here is a great website to do your research: National Vaccine Information Center. Your Health. Your Family. Your Choice.

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