Roll Over

Months and months of therapy to achieve...success...annoyance...rolling over. Little M has rolled over before, but two days ago she began in earnest...and she hasn't stopped. In response to being put down on the carpet, she let out an angry cry and began to roll, and roll and roll. Upon discovering the ability, she has continue ever time that she is put down to roll...including nap time. Unfortunately, she hasn't coordinated the arms completely, so she usually rolls, pushes up on her arms and bellows until she is turned over. Which repeats over and over again. Some may find this annoying...but I see it as success. I am learning to see the body in a new light. Every body part that moves is amazing and requires work and coordination. It is by watching it in slow motion and pain staking effort over months of occupational therapy that I have come to appreciate each movement and really rejoice in this giant feat.

Dear God

"God", "Do I start with Dear God, Mommy?"

"Sure", I reply

"Dear God, Thank you for animals. The best thing you made is the chameleon. I want to buy one, but we bought a game instead. Amen."

Choosing joy isn't always easy, but there are usually things in a day that show God's provision or goodness or at least just make me smile. These are the things I need to dwell on and surround myself with. I'm not ignoring the fact that there is pain and problems in my life and those around me, I'm just choosing to dwell in another place.

Purple Polish Admiration

I went away overnight with some friends and found myself spending the morning painting my fingernails...something I haven't done in years. I examined two bottles of polish, one in hot pink and one in purple weighing out which would be most admired...not by the world at large, clearly not by my friends, and honestly not really by myself, but in the eyes of two little boys waiting at home for me. I finally chose the shiny purple option (slightly less offensive) and even finished it off with a white stenciled flower on each thumbnail. I felt excited and a sense of beauty when I admired the finished product...I think I caught a glimpse of it through their eyes. They did not disappoint. They immediately clasped my hands and expressed their admiration. "Why couldn't you do your toes purple too?" they wondered..."Mommy, can I have purple nails?", they inquired. This continued through the evening and into bedtime. The last thing little H did tonight was to reach out and grab my hand and take one last look. As I struggle with self-image as an extra 25 lbs holds onto my body and blemishes shine through the foundation, I try to remember that that does not matter to my boys and it does not matter to my maker. I want to live a life full of things that bring myself and others around me joy...may my life reflect Christ and my security in Him...if it happens to line up with current fashion, that's a bonus.

Hope Remains

I find that I'm never down for too long. Not because of a continually joyous and optimistic disposition...although Pollyanna is a personal hero of mine, but because of continued displays of love and hope. I believe that God has continually sent the right people with the right words and actions at the right time so that I have never had good grounds for dispair. It's really hard to complain when your every need...even the new ones with Little M...are being cared for. We have not had a week without helping hands or a meal in the freezer or fridge. We have not had a week without a word of encouragement or a show of love or support. Well hope struck again. Even when doubts were beginning to overtake me and anxiety about the future...you'd think I'd learn...the very next day two e-mails were waiting for me in my inbox. Two children with Mosaic Trisomy 8...who could talk and walk and were joys in their parents lives. One 4 and one 15. Both examples of why we should keep hoping. Will Little M do everything they do?...maybe...maybe not...but now I have some concrete examples to hold my hope up and a reminder of love from the one in whom my hope is found. I'm right back to thankfulness and trust. It's nice to be back in the land of joy.

Reality Ain't So Bad...Most Days

I was wanting to write some more on my blog, but with a husband away for work, my time and emotions were stretched. Instead, I jotted some ideas into a book to remember for when I had a few moments. The moment is here, but unfortunately the sentiments of only days prior are no longer the same. That's the thing. I have good days...mostly good days and bad days. Unfortunately, yesterday was a bad day and I'm still in that weepy place of feeling emotionally raw. It didn't help that I read another blog that took me right back to the emotions of the beginning of my journey. My blog idea was that the diagnosis is often more frightening and heart wrenching than the reality. If you can live in the day and I can hold my sweet girl and play with her and feed her and watch her smile at her brothers...when I feel her sloppy kisses on my cheek and wiggle her toes into the feet of her sleeper...life is good. I played a game with the boys and even read them a story, I got a load of laundry in and talked to a friend, supper was ready when Jeff returned home and it was delicious. Life is good. Nothing is so difficult or unusual about my life compared to someone else. It's just my perspective. If I look at it as a hardship, it will be one. If I just focus on my day and the blessings of the day, it is a good life. Don't feel bad for me, don't act like there's a problem...I'm okay, life's a little different than I thought, but good. THEN the bad day came. It started ironically with Little M watching the light fixtures. Only days a go I wrote about her wonder at the light fixtures and how I wish I could appreciate the small things like she does. Instead of appreciating her wonder at the lights, I began to fixate on how much she was watching the lights. She wasn't responding to me or what was happening around her, she wasn't looking as I called her name, she was cooing at my bids for her attention, she was watching a light fixture. The unknown started to creep in and overwhelm me. What if that is all that she will be able to do? What if she never replies back to my words? What if she sits in a chair as a grown woman still cooing at light fixtures? I feel broken inside, sick to my stomach. Somehow hope had slipped back in and I had begun to imagine her playing with friends, cuddling with me watching movies, painting toenails together, talking. I don't care about how much she succeeds in school, if she goes to school. I want to give her opportunity for success and to support her, but a letter on report card means nothing to me. I've even come to grips with the fact that she may never walk...but I had imagined her with an awareness and an ability to interact with me, that I realized may not be reality as I watched her face glaze over. Now yes, it may be. Yes, she is surpassing original expectations in all her areas of development. Yes, there is reason to be thankful and hopeful. And even if she sits and stares and that is all she achieves, that will be enough. She is a beautiful and wonderful creation and she is enough. Some days those words flow freely and filled with joy and hope...some days my heart hurts as I tearfully choose to still utter them.

Eye Anxiety

We headed up to the children's hospital today to meet with an eye surgeon. It looks like Little M's eyes are getting stronger and may not need surgery. Just a reminder for me to not worry about the future. I've wasted too many moments being anxious about things that never come to pass. God has proven that He will give me the strength that I need when I need it.

Light fixtures, Bling and Other Shiny things

I was watching little M smiling at the light fixture and telling it tales of her admiration and I couldn't help but smile. There is just something about shiny objects and light fixtures that she finds irresistible. I was thinking to myself of how easily amused she is. I have bins of toys and books and feel the need to be stimulating her constantly and yet she finds pleasure in simply lying on a floor beneath a light. I've watched my boys do the same thing. Lately, Little H is fascinated with bugs and spends hours trying to find and hold ants. There really is something to be said for the simply things...or in Little M's case, the shiny things in life. I want to spend more time appreciating the things around me. Perhaps if I had a minute in my day to lay on the floor beside her, I too would find the light engaging...then again I may fall asleep. It's a hard balance to care for the many needs and demands of each day while still being present and appreciating all the parts that make up the whole. One more thing to work towards. Thankfully I have teachers and guides in every shape and size.

Another kind of bear hunt

As I was writing my previous post, it got me thinking that searching the internet is kind of like going on a bear hunt. My analogy may be weak, as I have never been on a bear hunt, or intend to for that matter, but I think the two may connect. When we were waiting for Megan's diagnosis I tried hard not to search the internet as I didn't want to make myself scared with all the possibilities of what she may have. After the diagnosis, I still tried to avoid it as the reality was also scary. I was learning a lesson about living in the present as the future really was more than I could handle. However, the lure of trying to find someone who could relate to me and some idea of what to expect occasionally drew me in. Here's where the analogy comes into play. A hunter goes in search of his prey, his prize. I too was after a prize...information and had to wander through a pretty crazy forest in hopes of finding what I was looking for. Sometimes I would get lucky and find something relevant or to give me hope...I'd spot a bear. And sometimes I'd leave empty handed. The worse part is that in my excitement to find my bear, I didn't realize what it would do to me once I found it. It could truly tear me apart...emotinally in my case, especially if I let my guard down. Knowing the future can be actually scarier than the unknown. I found a pattern of sleeplessness always following my hunts. Autism, eye surgeries, wheelchairs and low IQs...Lord, I don't know if I can handle what may come. That is when I am reminded that I have been given strength for today...not for all my maybes and tomorrows. Having a rare disorder with no answers has been forcing me to live in the day...it's all I can handle. And when I live in the day, I realize that most my days are actually good. I'm happy. I'm doing it. I should say we're doing it as there is a whole team involved in my daily living. Although the internet can be helpful in giving me an idea of things to watch for and finding some people to connect with, I do need to explore it hesitantly...entering it not with a spirit of fear and insecurity or else it's sure to eat me up.

Going on a Bear Hunt

There's a children's song that talks about going on a bear hunt. When obstacles come up, such as swamps, the song says "can't go over it, can't go under it, can't go around it, gotta go through it". When I recently heard about another young family who just had a baby with a genetic disorder, my heart hurt for them. My heart also just hurt. It brought me right back to the weeks in the hospital. They felt surreal. They felt dark. I loved my new baby and definitely had moments of joy during that time. However, there was a lot of heavy thoughts and feeling to also process through. I had to grieve the daughter that my expectations had given birth to and my reality had shattered. I had to come to terms with the road set ahead of me and learn to cope in the black hole of uncertainty. I'm still doing that some days. As I thought about this young family having to go through the same, I so badly wanted to fix it or make it easier for them. That's when this song came to mind. There is no way around the process of grieving and acceptance. It is hard. It can hurt. But you just have to go through it to get to the other side. Don't get me wrong God did provide peace and joy during that time. However, despite trusting Him and His goodness...which was also a road to get to...my heart still hurt. I know that I can't take the pain from this family, I just hope that I can let them know that they are on alone on their journey.

It's Raining, It's Pouring, the Ribs are Burning

They say when it rains it pours. Well it did that literally and figuratively this afternoon. After putting off cooking ribs in the fridge for a couple of days, today was the day to get down to business. I don't love the handling of bulky raw meat, but occasionally make ribs as a labour of love for my husband. Wouldn't you know that today I got the call that he would be working late...really late. With preparations underway, I used a gigantic pot to boil the ribs...I found an "easy" new way to try making ribs...then put them on the BBQ. I should have let the meat rot...or at least thrown it in the crock pot for a 9pm dinner. Hind sight is always 20/20. However, I continued with the challenge. Let me say that learning to BBQ while caring for 3 kids under 4 is not the best scenario. It got more complicated in that the heavens opened up and started pouring and I needed to collect the children in from the rain. This is the part where some butter...don't ask me about the butter...ignited on the BBQ and began to charcoal my entire meal. By the time I had the kids settled and I refocused on supper, there was little to salvage. A trip to Mr. Sub later, the kids were fed and I was about finished with this day. I did get them to bed...all later than I intended, but they did get to bed, with a story and hugs and kisses to boot. At 6 o'clock I was feeling my joy pushed to the limit...I was feeling everything pushed to the limit, but as I sit here in my still house, I realize that somehow we made it through another day. Some days there are stickers and stories and singing and playgrounds, some days it's closer to survival. Either way, tomorrow always comes and brings with it a new opportunity for me to choose the way that I am going to live. I choose to live in the moment...most of the time. I choose to be joyful even when I have reason to cry and sometimes do. And I choose to trust God's will for my life...burnt ribs and all.

Water Baby

Today the sun in shining, the baby is napping and the boys are actually playing well together. A really good day. Unfortunately that is about to change as I go don my spandex swimsuit and head to the knee deep waters of the children's centers swimming pool. Three c-sections and way to much chocolate later, a bathing suit is about the last thing I want to wear, especially without even the slight mask of water to cover my bulging belly. It must be love. I think that is the only factor that would lead me into this situation every Monday morning. The fact that little M seems to turn into a floppy noodle when she hits the warmth of the pool only makes this scenario less appealing. She is suppose to be doing Physiotherapy in the pool to combat her low muscle tone...however, it seems to have the reverse effect. However, we persist. Call it commitment, stupidity or stubborness...we persist. I think as long as I feel like I am doing something to help her, I can continue to feel hopeful. I know that my hope needs to go beyond my efforts, and it does, most days, but I'm still learning to rely fully on Christ strength, realizing that He doesn't need my help. My hope needs to be based on His unfailing love, not the successes or failures of therapy with Little M. As I head to the pool, I pray that my soul can be as relaxed as Little M's body as it hits the warm waves.

Ups and Downs

My three year old, Little H, is stuck in the middle and with the barrage of appointments that his younger sister has and the excitment that JK has brought for his older brother, he may have drawn the short stick this year. Fortunately, he doesn't realize it and infact he is a really happy kid. To my husbands chagrin, I chose Little H to spend time with me helping me put on my make-up this morning. I thought it would give me a few minutes alone with him and spare the impending fight with his brother over Lego. He is really into painting and crafts these days, so I let him paint on my cover-up and then grab the blush brush and paint on my blush. I even wore eye shadow, which was not planned, just to give him another canvas. As this portioned finished, I asked him to tell his father that I was about 5 minutes away from departure. On his way out of the bathroom door, he stopped and asked me to pause for a minute so that he would not miss any of my face painting while he ran my errand.
It's easy to be full of joy in these moments.
It's was a little tougher later in the day. After 8 months of looking, I finally found a support group on facebook for Mosaic Trisomy 8. I was actually really excited to find a group. However, as I scrolled through pictures and came face to face with a similar looking child, I was flooded with an ill feeling. I want her to look like me or her brothers, I don't want to look into her beautiful face and have to think about a disorder that I do not understand. I want to claim back her nose as her unique and perfect nose, not another trait of this rare disease. This is when the choosing joy become a little more tricky. Joy doesn't bubble out naturally in this scenario, it is a choice to trust God and His will for Little M's life and my own. As I sit and type at 1 in the morning, I realize that I have not perfected this. My heart still wrestles with this choice, some days more than others. However, I know that when I surrender my fears and hurts, again, I will come back to the place of peace and joy and get a few hours of sleep.

When Things Don't Go As Planned

*I always wanted to be a mom. I can't say I really pictured what that would look like. I can't really picture anything in my head for that matter. It's probably just as well, in that all of my expectation would have been shattered over the past 5 years. Okay, that's a tad dramatic...only most of them.

*After a few years of marriage my husband and I decided to have a baby. I still think it a bit ironic that we thought we had control in this realm...right down to the month that we wanted to have the due date. It actually happened quicker than anticipated. I convinced my husband that it would take months for birth control to leave my system...not so much. Before the trying really began, we were expecting our first. I realize now as I watch a close friend struggle with infertility not to take this for granted...I'm learning not to take anything for granted. With that said, we began the journey into parenthood. Full of tears of joy and excitement, equipped with What to Expect When Expecting and a registry at Babies R Us, we were ready for our new adventure.

*Here's where things start to go downhill. I can truly say that Pregnancy and I did not coexist very well. The "morning sickness" began almost instantly. Again having seen others with worse situations, I really shouldn't complain....but I will. It was a little rocky until I discovered the precise timeline of soda crackers ingestion required to keep my head out of the toilet. Then it got better. The nausea remained and was joined by shingles as I headed into second trimester. Who knew? With shingles under control, my blood pressure decided to rise and with it a tide of water retention. I'm not exaggerating when I say I was not a pretty pregnant woman. I puffed up like a blow fish. I could no longer put on closed shoes and my nose reminded me of a pig. And so it continued until I was placed on bed rest until I was induced. To make a long story short 30 hours of labour, 3 hours of pushing, and 1 gush later; I was rushed into a complicated emergency c-section. Welcome little G.

*I thought I would know my baby as my own instantly, but little G looked nothing like my husband or myself. In fact, he defied genetics and came out blond hair and blue eyed to a brown-haired, brown-eyed couple. He also defied the stereotypes and did not spend his first 6 weeks sleeping. I'll have to write another post some day about Colick. Some say that it is a myth and that all babies cry. Well until one spend 18 months getting up through the night and spend 7 hours a night for many, many nights, handing off a screaming baby to whichever person in the house is most sane at the moment...you or your partner, one should not speak to the validity of colick.

*It was truly a year full of ups and downs. Exhaustion does funny things to one's mind and personality and ability to cope. However, so does a beautiful baby boy. Despite thinking that it was insanity to have more than one child after our experience, we welcomed little H into our home 19 months after our 1st. Again my pregnancy was riddled with nausea and complications. The front runner being complete placenta previa. This required bed rest which was a struggle with a one year old at home. It really does take a village...and a TV. After another complicated delivery, Little H had respiratory distress and needed to be intibated and whisked away to another hospital. With some tears, I spent my first night as a mother of two, separated from both my babies. Little H is a fighter and was able to get home within a week of his hospital stay and despite a rocky first winter, seems to have overcome a lot of his respiratory concerns.

*Now one would think that perhaps I would have figured out that pregnancy was not a good thing for me, but I just felt that there was one more addition that our family needed. With a lot of prayer and discussion, we hesitantly decided to have a third and final child. A condition called Polyhydramnios was the only real concern in my last and best pregnancy. However, it foreshadowed an early delivery and second trip to a higher care hospital. This time it was not respiratory distress, but rather low tone that alarmed the medical personal and sent my beautiful baby girl out of my arms and into NICU care.

*I pray that no other parent has to experience what we went through in the first couple of weeks of Little M's life. There were tubes coming out of all of her parts, specialist to consult, her heart needing to be shocked, tests and more tests and a final conclusion. My daughter has a rare genetic disorder called Partial Mosaic Trisomy 8, which includes a neurological problem called partial Agenesis of the Corpus Callosum and in her case sever hypotonia (low tone). Unfortunately, the NICU unit was full, so I know that others have been through this and worse. I can only pray that the strength and comfort that God granted to us during this time would be extended to them.

*Since Little M's homecoming...after 3 weeks in hospital, life has been full of appointments and therapy and a whole lot of uncertainty. However, there is also laughter and laundry and Lego and macaroni. Things didn't go as planned. In fact, they have made me leery of plans and thinking too much of my ability to control things. Instead, I am trying to focus on choosing joy in each day and living in the present. The future is uncertain and overwhelming, but I am given the strength for today and more than that, the ability to be have joy and peace in this day.