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On the Edge of Crazy

Life with Sami

Just CMV

February9

A little boy just died. We are tempted to use other words, make it easier to hear. Passed away, left this world, became an angel. But it all means the same thing. He got sick and two days later was gone. I’m told that in many ways, he was stronger than Sami. He was less affected, less fragile. And yet. And yet.
There was a recent online conversation that caught my attention. A mom was told there would be no Make a Wish trip, because her child “Only” had CMV. Only. What a word. Yes, I do understand. Many children are born asymptomatic, or only mildly affected. CMV alone doesn’t guarantee a life limiting condition to most.
But to some, to those of us who deal daily with the affects of CMV, that word “only” is a nasty word. Most days, I find that we live the life we have adapted to, and don’t even notice the changes. Someone asked me the other day what the hardest part of my day was, and I really couldn’t think of anything. Every day follows the same pattern and it’s just our life. We do it and don’t even think about it.
Some days, though, some nights like tonight, the “only” comes back to haunt me. Only CMV. Only seizures and spasms. Only two tubes hooked up to Sami’s stomach 20 hours a day, only special formula and meds four times a day. Only special chairs and walkers and car seats and offloading and position changing. Only AFO’s and body jackets and hand splints and glasses. Only putting the cochlear on 4000 times a day, wondering if it really makes any difference.Only listening to every breath, waiting for that different sound that means something is wrong. Only wondering, every day, who is next to lose the battle, and when it will be our turn. Harsh words, I know. True, honest words.
God is the blessed bringer of peace. He is, after all, the Prince of Peace, and He promises us peace that passes our understanding. With peace, comes more “only” things. Things that only CMV has brought into our lives. That smile that lights up the whole room, every morning, when Sami sees each of her loved ones for the first time that day. That way she has of communicating that has every jumping to her every whim, and being absolutely delighted to do it. That demanding yell she gets when someone is wearing a hat and she wants it. That way she uses her whole body to “help” when she watches football and basketball. That way her siblings have of completely melting whenever they see her. That way complete strangers fall in love at the sight of her face. That way she laughs at each bath time, like it’s the best part of her day, and screams at me because she’s cold afterwards. That way that she giggles when I lay down with her and grabs my hand to fall asleep. And that way that her little foot reaches out at night, to make sure I’m still next to her. I treasure each of these things in my heart.

A mother lost her son tonight.  I can only imagine her pain, and I pray that God gives her that peace that passes understanding. I am sure that she has her own treasures stored up in her heart, of all of the things that CMV brought in to her life, and for that I am thankful. But I am ever more aware that, good and bad, it will never be “only CMV” to us.

Awake!

January22

Did you ever unexpectedly fall asleep in a moving vehicle and wake up to find that not only did you fall asleep, but you are somewhere you don’t remember getting to? I did, quite recently, only the moving vehicle was my life. I feel like I just woke up, but I didn’t even realize that I had been asleep. What woke me up, you ask? A book: One Thousand Gifts by Ann Voskamp, to be exact. (It is a wonderful book, I highly recommend it, but beware: it’s not easy to wake up.)
Waking up in such a way is very disorienting. As I sat down to type this out, I realized it has been over a year since I wrote anything. Where in the world did that year go? What did I do? How did I get here? Sure, I’ve been busy. Haven’t we all? But more than that, I’ve been asleep. Lulled that way by life, busy-ness, the daily grind: cooking, cleaning, feeding, diapering, driving, teaching. All good things, but things I can do in my sleep (so to speak). Things I can do without diving too deeply into the Word, or the things of God, or my own inner psyche, or creativity or anything else that requires real effort.
This book, this One Thousand Gifts, challenges me to eucharisteo, thanksgiving. The word encompasses grace, God’s free and ready favor, and joy, that thing we all long for. It challenges me to stop and look for God’s gifts of love, of grace, right where I am, and give thanks. Some days, that is so easy, wouldn’t you agree? The sun is warm after weeks of cold, and we thank Him. The family is healthy after weeks of sick, and we recognize His grace. The bills are paid, the water is hot, the lights come on, there is food on the table, all easy things to notice and give thanks for. But life is hard. Sin and pain and death are all around us. I have found that this awakening, this noticing of joy and grace and thanks, is painful too. To be fully awake, I must be fully aware of all the rest.

Today alone, I know of families grieving the loss of loved ones, struggling to make ends meet or living with devastating and life changing diagnoses. My children hurt and I cannot fix them, friends are in desperate need and I cannot help. On my way home today, while writing this in my head, I heard of another shooting at a school and my heart is broken. I struggle to find the balance between noticing and rejoicing in the graces of God in every place, every moment, and living in the real world of pain and sickness, not some Pollyanna place. My emotions are on a roller coaster, struggling to see, to surrender to what God is doing and where He is leading, even while I walk through the valley.

Some years ago, I heard a teaching about God’s love, and the woman was talking about love letters from God, those things that He puts in your path to remind you specifically that He loves you. For her husband, it was whales, for her, sea turtles. I love birds of prey: eagles, hawks, falcons. To me, when I see a hawk, it’s like a reminder of God and His love, every time. I search them out, and praise God, live in a place where there are many to be found. This morning, I was driving through an area where I can always find a hawk or falcon. As I’m driving, dividing my attention between the road and the sky and the power lines, I was disappointed. It was a beautiful day, a light breeze, perfect conditions, yet there were no birds. Finally, searching the trees, I found a single hawk. I really had to look hard. And so it is with our lives sometimes. Some blessings, some graces, are easy to see. Some days, in the midst of doctors, hospitals, seizures, diarrhea, pneumonia, or even just dirty clothes and squabbling kids, it’s so much harder. We really have to take the time to search, to see. I was reminded of the song “Be Thou my vision” and realized that it is God who gives us the vision to see. It was He who allowed me to spy that one hidden hawk, and He who placed that hawk there to be seen. He gives us the vision to see, and gives us the blessing to find. He does it all, and I can do nothing on my own.

As I was reflecting on how hard the search sometimes is, and how gracious He is to allow me to see, I was distracted from the search by merging with traffic. I caught something out of the corner of my eye, turned my head and there, not more than 25 feet away, sat a hawk on a wire, looking right at me. I laughed out loud. How like our Good God! Yes, often life is hard and the search is difficult and our eyes are distracted by all the sin and pain and death and we have to work hard to notice the graces. And then, when you least expect it, He surprises you with joy, staring you right in the face, daring you to deny it. Daring you to deny that He loves you and has been right there all along.

I am far from perfect. I am forgetful and selfish. Not more than an hour after the surprise gift and the out loud laughter, I am frustrated and grouchy at traffic. I am distracted by keeping an eye on Sami, who is coughing and choking and I am so afraid will have another seizure in the car. I am rehearsing the questions I want to ask the neurologist and I am on the phone with nurses, leaving messages for doctors and discussing medicines and consumed with the care of a special needs child that doesn’t rest, even while driving. And as I’m exiting the highway, headed for home, I look over and there sits that same hawk. Daring me to deny that God put him there, to remind me of His love. Daring me to stay awake, and see what God has for me.

 

Coming soon!

November11

Apparently it’s been seven months since I last blogged. At least where anyone can read. I blog all the time in my head. Raising a special needs child has so many ups and downs that I wish I could share with everyone. I am hoping to get some of those down. So for my few faithful readers, hopefully there will be several new blogs soon!

A year ago I had a baby.

April1

A year ago today, I had a baby. That might not seem like such a big deal, babies are born all the time. It was a huge deal to us. It is amazing how very quickly your life can change completely.
“You are not your own, you were bought for a price.” This has been evident in my life many times but never so much as with Sami.
She wasn’t supposed to happen. Luke and I had decided that we were done having children, our family was big enough. Luke went in and had it taken care of. Life went on, kids got bigger, I got more and more involved in birth work. Then I got sick. How in the world could I be pregnant!? It took quite a while to accept that she was coming, and far longer to be happy about it. I had a plan for my life and it did not include having another baby. But I am not my own any longer.
Fast forward to April 1, 2010. We pretty much knew she would hang out in there two weeks longer than necessary, just to be born on this day, it being her dad’s favorite day and all. I woke up knowing I was going to be in labor before too long. I expected it to be an easy labor, the last two were absolute cake walks. It went fast, that’s for sure. But it was the hardest thing I have ever done. It was like the height of transition for over an hour. It was horribly painful and I was completely out of control, my body was doing what it needed to do. Even in that, I was not my own.
Finally she was almost out. Then she got “stuck”. Come to find out, her head was way smaller than her shoulders. It took a few pushes, and her poor little head was so bruised by the end, but Samantha Amidala Joy was born into this world, screaming for all she was worth. And she screamed for the next three days. That was our first clue that our lives were not ever going to be the same. Our midwife encouraged us to see the doctor come Monday. Sami’s head was far too small. Later that week, we got her diagnosis: Congenital CMV. I had never even heard of it! I had just recently gotten to a place where I was joyful and excited to have a new baby, and now they were telling me all of the things that could be wrong with her.
Today, a year later, life really is different. My life, my body, my time, they aren’t mine any longer. Life revolves around Sami and her needs. It is hard to believe she is a year old, especially when in most ways, she is only about 4 months old. Sami is deaf, has Cerebral Palsy, and a feeding tube because she can’t eat anything on her own. She has spasms, can’t roll over or sit up and is frequently sick. She also lights up my life in a way I had never dreamed of.
I may never attend another birth or teach classes. I may never be the homeschool mom that I once was, or be as involved in church. My days are full of therapies and doctors appointments. My living room is packed with adaptive equipment and an oxygen tank refilling station. Our bedroom is full of a baby crib, feeding pump, humidifier, oxygen tank and nebulizer, and probably will be for quite a while. Alone time, “me” time, now consists of taking a shower or going grocery shopping by myself. “Date night” is watching TV with my sweet hubby while I hold a sleeping baby.
A year ago I could not have dreamed of the hospital visits, medical bills and stress. I would not have chosen this path, I don’t think, given a choice. But my life is not my own. And how thankful I am for that. A year ago I could not have dreamed of the amazing blessings God would pour out on us, of the truly wonderful people who would come into our lives, or of the new and strange things that would become standard to us. I could never have guessed how much love and joy one helpless child could bring, how much my heart could swell with thankfulness and pride at the smallest of accomplishments or of the hidden wells of strength God has placed in me. Without Sami, I would never have known what it is like to live each day in His grace, knowing without Him I don’t have a prayer of making it through the day.
My daughter is a miracle and I am so very thankful that God has given her to me.

Not Knowing

January25

My daughter has congenital CMV. I know, this is not new news. We’ve known for a while now. The ramifications to her future, however, continue to make themselves known.

Sami’s g-tube was placed November 22, 2010. Two months ago now. It’s been an up and down battle, with flu, C-diff and generally unknown issues. She’s not where we want her to be, but she is growing and getting stronger, and we are so thankful for that.

She continues to have OT and PT weekly. Again, she is getting stronger, and it is fun to watch the things she is learning to do. She is so much better at holding her head up, and peek-a-boo is her new favorite game. During her last assessment, she showed improvement; she is still way under age level in some categories. She has speech therapy (which is really feeding therapy) twice a week. That isn’t going so well. She is so very resistant to taking the bottle. Laurie tells me not to give up but sometimes it’s a struggle. Ups and downs, that’s what our lives consist of. Not good days and bad days but good hours, good minutes.

Here’s my point of the day: I used to believe that I wanted to know how it was going to end up. Tell me what to expect and I can handle it, I just want to know. I don’t like waiting, wondering and worrying. Just tell me. But I have learned that God’s grace is better than that. Praise to His name, He doesn’t work that way. Of course, I realize, in all my Christian knowledge acquired over years of church going, that He doesn’t want me to “handle it”. He wants to be made strong in my weakness. A concept I am still learning how to live with and through, I will admit that freely.

But I have learned something else. Hope. Not knowing the future means I can still have hope. I look at my daughter sometimes and I wonder if she will ever roll over, crawl or walk. Will she ever learn to sign or to talk? Will she ever be able to join in the family love of reading? And I am almost overwhelmed with despair thinking of what ifs. But right now, at this moment, there is no reason to believe she won’t do those things, eventually. I have realized that hope keeps me going. If I really did know how it would end up, how bad she would be, I couldn’t stand it. Right now, the future is before us. She is a beautiful girl, full of life and desire to do new things. If I look at her, focus on her and not on what she can’t do, the despair is quieted.

I don’t know what will happen. And I am thankful for that. Because I can take each day as it comes and be thankful for that day, and bask in the blessing that my baby girl is for all that meet her. “So do not worry about tomorrow, for tomorrow will care for itself. Each day has enough trouble of its own.” Matthew 6:34

And God never fails to remind me, His Grace is sufficient for me. He will take care of tomorrow, and every tomorrow after that, no matter what the future holds. That’s not just something I can hope for, that is something I know.

Night and Day

December29

Time flies so fast. I have a couple of posts to add, from the last month or so. This one was written 11/13/10, from a hospital of course:

It seems silly to say there is a vast difference between night and day. Obviously, right? They are opposites, after all. But it’s a very real truth in my life.

During the day it is easier to smile. Easier to hide, to accept, at least on the surface. To say “that’s okay, I got this. This is fine, no big deal”. It’s easier to be okay with Sami being deaf. To find the bright side, like, we will do cochlear soon, she’ll never know the difference, etc. It’s easier, in the daytime, to accept our “new normal” of occupational therapy, physical therapy, sign language, feeding specialists, the list goes on. It’s easier to focus my eyes on what my children are learning, on what God is teaching us through this, on the joy that having a special needs child brings. It’s easier to keep my eyes on God and trust that His plan is best.

It’s easier to say “it is well with my soul”.

Ah, but nighttime. A different story altogether. Nighttime, when it’s dark and quiet and I’m awake while the world sleeps. That’s when it is not well with my soul.

This is especially true at 3 am in a strange hospital room. Walking the floor with a miserable baby, or standing over her crib patting her when she wakes up screaming, I feel a little differently. That’s when my heart breaks.

I remember there was a time, for a few weeks, when she could hear my voice, when I could calm her by speaking or singing. I was able to soothe her as she ate, cried or fell asleep. Then it was gone. Now, without her hearing aids, she can’t hear me. When she cries, she closes her eyes and can’t see me. So many nights, when she is sad or hurting, sick or spazzing, my voice can’t help. My smile can’t help. All I can do is touch her, hold her, pouring all the love and comfort I can into my touch, hoping it’s enough. During the day,  I have faith that it is. At night…

I am learning that faith is an ever changing thing. It grows and shrinks constantly. Mine is smaller at night I think. It is so much harder to trust God’ s plan as good. I find I can’t say “it is well with my soul.” My soul rages at the unfairness. My heart breaks with the pain, Sami’s and mine. My mind races with thoughts of the future, how different it will be for her than for her siblings. I fear and worry and sorrow and grieve.

But then I say to the Lord “You will have to do this. It is not well, you will have to make it that way. You will have to give me what I need, what we all need.” I am reminded of the verse “I believe, help my unbelief”. It’s a process, all of it. Sometimes, like during the day, I feel farther along in the process than other times. At night, in the dark, alone with a sick baby, all I can do is hurt. And hold tight to my Lord’s hand. At that point in time, it becomes not about what I believe or even what I feel. It’s not about what is right or wrong, what I should be doing or thinking or saying. It’s all about just being, me being there for Sami and the Lord being there for me.

It is not well with my soul, not really. But the longer I hold on, the more He makes it that way.

A Glimpse of God

October10

I would like to share a snapshot of my day with you, well more specifically, my night. “Not this again,” you might say. Bear with me though. It will be worth it.

It’s 3, or 4 or 5 in the morning. The time is really irrelevant. We’ve been awake for awhile now. Sami eats, cries, eats and cries. Her tummy hurts, again. I do what I can to ease her. I let her nurse when she wants, we bounce, she lays on my lap, I change a diaper or two. She is laying on my lap, calm for the moment, when she looks at me and smiles. I catch my breath at the sheer wonder of that smile. It is a glimpse of God. She doesn’t care that it is most likely a poor food choice on my part that is causing her pain. She doesn’t care that her medicine might have been late or even forgotten that day, which does happen. She doesn’t care that she is exhausted and should be curled up sleeping. She loves me, and she smiles.

Sami, like all babies I expect, has different smiles. There is the “my siblings are so funny” smile, and the “the dog is wallowing all over me” smile. There is the “I love panda bears” smile and the “I’m so ornery, I am biting you on purpose” smile. This smile is different. It starts in her eyes and lights up her whole face. It is her “I love you no matter what” smile.

We are humans, heirs to Adam’s sin and wrapped up in the fallen world in which we live. As hard as we try, we can’t do unconditional love. Our feelings of love ebb and flow, easily influenced by circumstances, hurt feelings and how we are getting along with a person. Only God can love unconditionally. We are allowed a glimpse of that love in the smile of a baby. That smile never fails to bring tears to my eyes and thankfulness to my heart.

I am so blessed by this tiny creature, so dependant on me for everything. Yes, there is a part of me that rages, screams and cries over the challenges Sami will have, that weeps in the face of all the what-ifs. But there is a much larger part of me that is overwhelmed with the joy that she has brought to me. A part that wonders at her sweetness of spirit and enjoyment of life. A part that stands in awe of the little glimpses of God’s love, caught in my baby’s smile.

And then God swooped in

October2

I was having tea with a good friend of mine recently. She struggles fiercely with several debilitating chronic illnesses, and she was relating how exhausting and painful her week had been. Then she said “But after bad days like that, God swoops in and gives me a restful, wonderful day”. I prayed right then, Lord, swoop away.

It took a few more rough days and a couple more long nights of no sleep. (My last post was a result of one of those long nights.) But then, God swooped in. My wonderful family and I went on a mini vacation. It wasn’t much, just two nights in an Inn with unlimited access to the pool and natural hot springs. But it was everything that I needed. It was a chance to rest, away from the ever present laundry, dishes, meals and school work to be done. It was a chance to reconnect with the loved ones that often get pushed aside in the tyranny of the urgency. It was a chance to marvel at the beauty of God’s creation and the wonder of His grace.

There was swimming, soaking, fighting, forgiving, talking and laughing. I am so thankful for the time we had together. Time marches on, as we all know. My children grow older everyday, and they are changing before my eyes. I was forced, the last few days, to see where I have failed them. I put too much of my focus on a rough pregnancy and a consuming first six months with Sami, to the detriment of her siblings. My two older children are in the beginning days of that oh so difficult time of puberty. The younger ones are growing and changing and learning so quickly. They need more from me, and hopefully, with some new strategies and God’s grace, I can give it to them.

How will I balance the demands of my days and my sleepless nights with being a better parent? I don’t know for sure. I learned this week that it is worth the time and money to try though. It is 2:30 in the morning, I’ve had less than an hours worth of sleep. Instead of being consumed with frustration and fear, however, I am filled with memories of golfing. The swimming was fun, the meals were good, but the golfing was the best.

It took us longer to do three holes than it does most people to play 9. Jeremiah and Dagny were so proud to drive the rest of us around in the golf carts. Hannah worked so hard, staying positive as she worked her way down the course, 10 feet at a time. Abbi, not interested in playing herself, cheered everyone else on in that elusive quest of putting the ball in the hole. I laughed so hard at Luke, losing his ball in the rough and choosing to hit another, only to have it land 3 feet from the first one. “At least I’m consistent,” he says. He returned the favor when my ball, instead of going left like I aimed, sliced right and bounced off a tree. Jeremiah refused to get frustrated when he went from sand pit to sand pit, completely overshooting the green several times. He is already plotting who can take him again. We all shouted hooray when we finally, after way too many tries, managed to lift the flag and knock the balls in. One beautiful afternoon, some well spent money and priceless memories picture perfect vivid in my mind.

My kids are great people. I pray that I can hold on to the memories we made this week, but that we will, that I will, do what it takes to make more of them. Yes, life is frequently hard around here. It will more than likely only get harder in some respects, as Sami gets older and more of her needs become apparent. But life is funny, and fleeting, and I want to grab on with both hands. Father God, please swoop in often and remind me of the important things. My children are blessings that are growing up so fast; my husband is kind and funny and brings joy to my heart, and rest comes from You, not a certain amount of sleep every night. (Although I wouldn’t mind a few more hours here and there.)

On the Other Hand

September29

It is 4:30 in the morning, and I have had all of 45 minutes of sleep tonight. It is the perfect time for all of the thoughts and feelings that I hold at bay during the day to come rushing at me. I am thankful for the small victories, yes, but sometimes the challenges overwhelm those victories. Sometimes the emotions just plain overwhelm me.

I never resent having Sami; I love her more than life. I feel frustration often, however. Like tonight, when her belly is acting up for no good reason and she is wide awake. It frustrates me that I eat almost nothing to try to keep her reflux at bay and yet, seemingly randomly, it keeps us up anyway. It frustrates me that every night is different, which makes putting her on a schedule impossible. Don’t even get me started on her stupid hearing aids. Those are the obvious frustrations.

Less obvious are the other feelings. The feelings of guilt, for example. I wish that I could talk to someone who has a child with CMV. It would be nice to know that someone understands, has been there. Don’t get me wrong, I have wonderful friends and lots of support. But no one has even heard of CMV, let alone experienced it. So why haven’t I joined some sort of support group, you ask? Besides the fact that there are very few, guilt is the answer. I read of how many problems so many of the children have and I feel equally blessed and guilty. My child is so healthy compared to many others. I have no right to complain, I tell myself. I am learning, however, that knowing how much worse it could be doesn’t make what I live with any easier. It’s a cycle, do you see? I feel thankful that my daughter isn’t losing weight and vomiting constantly from her reflux, but I feel frustrated because her reflux keeps her in pain and me exhausted. Isn’t that bad enough? The guilt feeds the frustration and so on. I wish that I could have more help with Sami, especially in the middle of the night. No way will I ask, though, I feel bad even thinking it. My husband works very hard to provide for us. That’s his job, this is mine. While I recognize that this is probably faulty thinking, it’s true to me. If he were to be up with Sami while I slept, I would feel too guilty to actually get any rest. Then watching him struggle with his grumpies or worse, a migraine, because he didn’t get enough sleep, would ruin my whole day. And of course, the guilt I feel that she has CMV at all.

And then there is the fear. Yes, Sami is so healthy and stable now. But the older she gets, the more signs of more serious issues crop up. It is too soon for a diagnosis of CP, but I can see signs. She seems so bright now, but will it last? She has all the warnings signs of much more. I do research and read a lot, and I worry. I don’t want to borrow trouble, but I want to be prepared. What if?

I know what you would tell me if you could, because I’ve heard it all before. I tell it to myself all the time. It doesn’t change how I feel however.  And in the middle of the night, with no sleep, those feelings are all consuming. God is gracious, and his mercies are new every morning. He is my provider, my sustainer and the lover of my soul. Ask me tomorrow, I will be fine. But tonight, God seems far away, I am tired, and you get the raw ramblings of emotional me.

It is 6 am, and my daughter is finally asleep.

Small Victories

September27

Having Sami has changed my life. Of course, every child you have changes your life in some way. (Sleepless nights, more diapers, louder and messier home, more babies to love!) But with Sami I feel like it is more obvious and impactful. Case in point: learning to celebrate small victories.

With all of my children, I celebrated the big things, of course. Rolling over, sitting up, crawling, walking, the first tooth, you get the idea. All of those things seemed guaranteed, but still exciting. They were anticipated, watched for and exclaimed over. I have since learned that nothing is guaranteed. And that makes everything exciting.

Dagny heard me cheering for Sami the other day and came into the room to see what was so exciting. She thought I had lost my mind when it turned out the color of Sami’s poo was what had me so excited. I wasn’t sure how to explain that Sami having normal color, non-bloody stool was to be celebrated. Her tummy was working for once!

I don’t watch the calendar to see when my baby will sit up or crawl anymore. Instead, I celebrate when she holds her head up in a certain way or for a certain amount of time. I rejoice when she tries to get her hand to her mouth, and laugh at her look of surprise when she makes it in. My heart is gladdened when she reaches for a sister’s face and my day is made when she is able to grasp her baby doll.

Small victories, previously unnoticed, not recognized for what they are. Everyday blessings worth celebrating.

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