Yogariffic!

Well it is never a good sign when your husband laughs as he watches you exit the store with your newly purchased yoga mat. To be fair, I don't think either of us thought that this day would come. I may truly be one of the world's most naturally inflexible people. I remember avoiding kayaking as a child at summer camp, because I couldn't sit up with my legs straight in front of me...I still can't. Despite my avoidance of all things requiring flexibility...I keep hearing about the benefits of stretching and being flexible. Heading rapidly towards middle age...I'm fighting against a body that is ready for retirement. I creak and groan and move around like a creature in the night rather than a hip and happening young mama. As I have seen various specialist over the years to deal with issues in my feet and knees and hips and back...it keeps coming back to needing to stretch my muscles. In my attempt to find balance, I decided that yoga may finally be worth the embarrassment and searched for a perfect class for me. I found one, but didn't feel like I could use one more minute of help from my faithful village of supporters, so decided to keep waiting until a better time. Then I saw a sign...literally...that advertised a yoga class, close to my house and at exactly the right time in the week when I already had help but an hour to spare before Meg's therapy. I signed up and attended my first class today. I am one for exaggeration and was hoping that I had exaggerated my lack of flexibility even to myself. Not so. I really cannot touch my toes. I really cannot sit up without crossing my knees. I really am not made for yoga. However, I am beyond embarrassment so am just going to run with it. I've got 8 weeks of yogariffic fun ahead. Perhaps I may even move slightly more limber when it is all said and done.

Grounded

I've struggles these past couple of months with finding stability in my life. As Jeff comes and goes with work, my world seems to crumble and rise. The delicate balance of my life seems to be tested by the increased work and travel needs of Jeff. The wave of persistent colds and a brutal stomach bug did not help with my struggles as it left me feeling more overwhelmed and isolated. Then spring came. The sun has come. We've gone for walks and bike rides. Thanks to some meds, an improved sleep routine and a blackened window, Little M. is starting to sleep well fairly consistently. Jeff returned...although not for long. Even Little M's fits which have been one of my hardest struggles have quieted. Instead of feeling like I was barely hanging on, I feel like dancing and singing and living life to the fullest. It seems bizarre to picture myself only days ago in such a broken state. I wish that I wasn't so emotional and vulnerable. I wish I could be more grounded. I feel slightly seasick from the constant back and forth motion of my emotion. I know that I can find that stability in Christ. I just need to remember to take my eyes off myself and my sinking ship and look up during the storm.

Connecting

I began this blog to process my many thoughts on parenting a child with a rare genetic disorder. It began with a pile of papers by my bedside that I scribbled away on in the middle of the night, trying to find some peace and rest in my mind so that the rest of me could sleep. After hearing of other blogs, I decided to write my thoughts online to allow God to use it to connect with others if He so lead. After searching for my own blog and being unable to find it, I started to doubt that idea, but continued writing for the sake of posterity...like a permanent journal for my fleeting memory...and for a few faithful family followers. Then it happened. Last week, I received an e-mail from another parent of a child with Trisomy 8. She had found my blog and was wanting to connect. It made me smile and so thankful. God did use my simple little blog and blessed me abundantly by doing so. Since Little M was diagnosed I have wanted nothing more than answers and to connect with someone else in my boat. All the children's hospital could offer me was a website to a support group in the UK. After months of searching, I found a group online, but have been unable to connect despite various attempts to talk to the few other parents out there. I'm guessing they're a little busy too. However, that ache to feel less isolated, has remained. I find it amazing that God could use this blog to bring into my life the answer to this prayer. Little M and this other young boy don't seem to share too much in common, but at least there is another mom out there, who knows my heart in a way not many can. What a gift! I guess we never know what God will use, we just need to be open vessels and wait on His good and perfect timing.

Slowing Down and Gearing Up

I've been rather uninspired lately, so haven't written, but thought it was due time. I'm afraid that stomach flu has hit the house, so it was a quiet weekend. As it was only my eldest sick, it was actually almost nice as we stayed home and played too many hour of Wii and read stories and just hung out. I'm still holding my breath hoping that it ends with him. As Jeff heads out on another trip tomorrow my prayer is that he is spared. I can't imagine being sick on an airplane...not something I want him to add to his resume. I wish it didn't take illness to force us to slow down. For some reason I feel like I always need to be moving...probably because it's usually true. There always seems to be something needing cleaning or purchasing or a person needing a call. In the moments where I pause to read a book or play a game with the boys, I savour the stillness and that feeling of living in the moment. I don't understand why it seems so hard for me to find my way back to that place, why I always have the feeling that I need to be doing something else. That's my goal of the week...to live in the moment. There is a lot of blessings and joy to be found in those moments we tend to rush through. I know that the busyness of the week ahead will brush aside some of my idealism, but it's nice to at least look at the new week with high hopes!

Denture Dread

My husband is a handsome man...at least to me. He may be a little short in the hair department, but I've barely noticed the sharp decrease in quantity over the last 10 years. However, he has. He notices the shifting hairline and the hidden white strands. I've always wondered why he seems so bothered and tried to encouraged him. Then it happened. I was brushing my teeth last week and noticed that my gums felt funny. When I looked in the mirror I discovered that my gum line was receeding in certain sections and definitely not looking stellar. I alerted Jeff to the possiblity that I may have gum disease. I brush and occasionally rally to floss. What was going on? Then it struck me. I'm deteriorating. I'm aging. This body of mine is not going to last forever...although I've certainly increased flossing and garggling to help hold back the process. Aging is not an easy thought to ponder. I know where I'm headed and desperately want to want to go to heaven, but it's completely unknown, so I struggle. I'm also not sure I want to go through the process to get there. I'm not so good with the unknown. I guess I'm going to have to go back to the trust. I either trust in God's goodness or I don't. Apparently this lesson is going to be repeated in my life in many more ways than with Little M. Hello dentures...I'm getting ready to meet you!

Then Comes Spring

I once took a Bible study that focused on the seasons of our life. It labelled certain stages as certain seasons. I don't remember how it was all defined, but have certainly felt like I've been in winter...literally and figuratively speaking. This past week held some dark days for me as I struggled with feeling overwhelmed and slightly sinking. It began with good news, in that Little M is starting to imitate and show understanding in words, so they want to see her now for speech therapy on a more regular basis. This should be thrilling...but I just felt weighted down with another weekly appointment to balance. Instead of pulling out the calendar and using my creative juices to figure out how to tackle this new challenge, I just felt like escaping my life for a while. I wished I was a bear and could crawl into a cave and hibernate for a couple months. The sleep analogy is also very appropriate in that I've been tired. Truly tired. Little M has had two rocky months with sleep. Numerous times a week she has been waking for 3 to 8 hour periods and screaming if not in our company. This has created numerous questions and concerns. Is it connected to her neurological issues, is it behavioural? Is there any way to know? After almost two months of this alert nighttime behaviour and a desperate discussion with her pediatrician along with a thorough examination, the doctor suggested it may be neurological and she should start on melatonin to help her sleep. The first night was stellar but the following three a nightmare. My hopes of a quick fix evaporated along with my ability to cope with life. We moved a single bed into her room with hopes of at least one of us getting some sleep and perhaps the other while keeping her company. Our sleep concern was only a small component of our concern over M's sleeplessness. She struggles to fight infection and was trying to get over pneumonia...sleep was definitely needed. As well, her tone seems to severely drop with illness and lack of sleep causing more falling and injuries to herself. It also increases chocking risk and tantrums...both very stressful and dangerous to M. On Thursday at physio, our OT and PT were there and observed her in this tired and much more "floppy" state. They voiced concern that sleep and illness do not generally account for such a change in tone. They suggested a consult with the neuromuscular and metabolics departments at Mac to look for some answers. We've already consulted with these departments at birth, but look to be going for round 2. As Jeff's crazy work travelling schedule hung over me and the rain kept coming, I truly felt like I was close to my breaking point and talked to God to remind him of that. A great small group and some encouraging friends helped break up this dreary week, but nothing brought me hope like today. The bed in her room has worked well and she responds well to Jeff sleeping in her room when she wakes and goes back to sleep quicker and allows us all more sleep. With more sleep comes a happier and more vibrant little M. When she woke I said "hi M.." to which she responded "hi Mama". We repeated this numerous times and had a happy cuddle time before dressing for the day and having breakfast. Her speech and focus seemed strong but also her eating. At lunch, Jeff and I stared in wonder as Little M ate a cracker. Every week I lay out various items on her tray to have her try to eat, most of which are thrown on the floor. Crackers have consistenly been a floor item, until today. She took a bite and another bite! Then they hit the floor, but it was still progress. She even ate small pieces of grapes. After 19 months of trying to move beyond pureed food...this was a monumentous occasion. The day doesn't end there. After supper, we went to Walmart to walk around. Since I had Jeff with me and had no shopping requirements, we let Meg walk holding our hand around the store. Her excitement over everything and enthusaism to be able to walk and touch objects made Jeff and I both smile. As I walked with her little hand in mine, I felt overwhelmed, but this time with joy. I was walking with my daughter. My daughter was walking. How far you've come little girl! It will never get old. It will always be a miracle and a reminder of God's love. As I see the green grass outside today and felt the warmer air, it gave me a new burst of hope for this week...after winter comes spring.

My Comforter

I was headed to my first speaking engagement with a pit in my stomach...fear...probably. I was to speak to a women's group about my journey with little M and choosing joy. A bit of an emotional topic on a good day and definitely moreso on the three hours of sleep that she had afforded me the night before. As I began to drive, I thought to myself that I should play some worship music or spend time praying to calm my fear and help me prepare. God is my comforter, which I was actually going to discuss, so it made perfect sense to turn to Him. As I opened my CD case to pull out a worship CD, a Taylor Swift CD fell out first. I popped it into the CD player with a smile and turned it up. It brought back a lot of memories of trips to Mac and time in the hospital. You see, I couldn't listen to worship music and had a hard time praying in the beginning...I struggle to process and couldn't figure out how to respond. As Little M was taken to Mac, I sent Jeff out to buy the Taylor Swift CD from the pharmacy across the road...a strange request, I know. I played that CD ad nauseum over the next 6 months. Whenever, I felt pain in my stomach...my sign of stress...on went Taylor and I found some calm. As I played the CD again, I wondered why it had such a calming effect on me. The best I could come up with is that it is honest, but still full of youthful optimism and a whole lot of love. In the midst of pain and grief and struggle, the distraction of young love was just what I needed. Love seems to be Miss Swifts running theme and love is exactly what I needed to be surrounded by and exactly what I needed to give to my sweet new baby. God's love was always there of course and is the source of all love, but it was a bit too much for me to handle directly. I needed some time to work it through and come to a peace with His love and goodness despite the circumstances in which I found myself. I don't know that a Taylor Swift CD was a gift from him...a gentle reminder of His love while I worked this through or if that is a bit of a stretch...but I think He can be our comforter in ways that we cannot expect.

Surfing Girl

In my busyness to make breakfast and get the family in motion this morning, I left Megan for a minute under the watchful eyes of her big brothers, sitting on a child's rocking chair in the next room. Her older brothers began to laugh, which piqued my interest, so I took a look. My heart stopped at I discovered sweet little M, standing on the rocking chair with her arms out in a surfer pose, wiggling her body to rock the chair. Little girl, you know no limits...thankfully you can't understand your diagnosis and disregard it completely in how you live your life. Keep living it fully, sweet baby...although maybe with a slightly higher regard for your personal safety.

1000 Thanks

I was still struggling last week with figuring out who I am now and being content with it. I want to be the person people call for help and an active part of our friends and families life. Due to appointments and sickness and Jeff's crazy travelling, I feel more and more isolated and less and less able to do the things that I think are important. I lost sight of the value of being at home with my kids and found myself spending more time wandering around the house, uninspired, waiting for time to pass and something exciting to happen. Then I stumbled upon a link to a blog written by an author of a book entitled, "1000 Gifts". I read a few of her posting and some brief summaries of her book and already felt inspired. It seems that she was writing on my exact issue...in that she was encouraging people to see the gifts in the moment they are living in...the here and now. The next morning, at a mom's group we watched a video on the importance of raising God honouring children and living that example for them. It hit me as I listened that I've switched focus to the laundry and dishes and diapers and forgot why I was really home. I began to feel like it wasn't enough and was desperately looking for something that would be. Well, it is enough. In fact, it's more than enough. Being a mom that is involved with her children and is trying to raise them to love Christ is not always an easy or rewarding task, but it is an extremely important one. Although, I don't know what the book "1000 Gifts" is really about, I guessed it was looking for the gifts in each day, so I started to do that as well. I started my day making a sticker story with Hudson. Thank you God for stickers and the little boys who are facinated with them. Thank you for time spent together. Thank you for snow and the sun glistening off of it and the small footprints treking through it. Thank you for laughter and bread and happy times at the kitchen table. As I walked through my day, I tried to see it with new eyes. I had a good day. Thank you God for your gentle reminders and a refreshed perspective.

Oh Baby!

I started this post over a month ago...but have had a serious case of writer's block, so haven't finished it until today. The story is now old news, but still makes me smile, so I'll share it anyways. God always has a way of pulling me out of my down swings and moments of doubt and despair. After having some amazing success in Physio, I felt like little M was unstoppable. Unfortunately, the same week as I was witnessing her walking success, there was a thread on an on-line group for Trisomy 8 children about their inability to talk. Seriously! I feel like Little M works so hard to overcome the odds in one area only to turn around and see another mountain in front of her. Almost all of the children had extreme difficulties with speech. Some not speaking at all and some managing two word sentences...at the adult age level. I felt that dark feeling of defeat slipping over me or at least of another daunting unknown. That's when the trip to Walmart came into play. It was one of those days where the odds were not looking good for me...one week without a husband, three tired and hungry children, one long list of groceries and items required from Walmart...including a prescription for a nagging health issue that had me feeling under the weather...not a good scenario. I was desperate to get my errands done before Jeff returned from a week absence, so that we could enjoy the 24 hours we had with him before he headed away for another week. The idea of wasting that precious time with him doing errands, spurred me on despite the obvious possibilities for disaster. After waiting in line to find out that my prescription still was not ready, the kids begged yet again for some time in the toy department to which I relented with a 5 minute warning. We did a whirl wind tour of the Hot wheels and action figure section, followed by a trip down "animal lane" for my middle child. "Animal Lane" is really the girl's section. I don't know why all things animal seem to be labelled feminine, but they are...littlest pet shops, zhu zhu pets, Fur Real animal...all in "animal lane". After pushing a few buttons on the animals, we headed for the end of the aisle only to be stopped by a single word uttered from little M. "Baby". I immediately froze and looked around to see if anyone else had heard what I thought I had. Unfortunately, it was just me and the boys...no television crews around to record this momentous occasion. I hadn't realized we were passing the dolls until little M had reached out and called for them. I hesitantly said "Baby?", to which she again said "baby". I'll spare you the next 10 exchanges between us as they were exactly the same, except for me giving her various dolls to touch as a reward for each time she said the word. The shopping trip took a dramatic turn for the better as Mommy practically skipped down the aisles and was very open to all children requests. I came home and tried to repeat the scenario for various family members to no avail, but that's okay because in that one word, the clouds of uncertainty and fear were swept away...at least for now...and "oh baby" does it feel good!

Accepting Me

I recently joined a new Bible study group at church and attended our first meeting this week without Jeff. I was nervous to be meeting a group of strangers and wanted to make a good first impression. As we were doing icebreakers and trying to learn about each other, I felt compelled to explain that we used to be really supportive in our small groups. We used to provide a lot of practical help to our friends. The leader caught on and said something like, "but who are you now?" I struggled with the question and said, "but I liked being that person...that's who I want to be". This episode threw me off a bit but was expanded on in church this morning during a song. We were singing "Jesus, all for Jesus. All I am and have and ever hope to be. All of my ambitions, hopes and plans, I surrender these into your hands." Those may not be the exact words, but they give the idea. I stopped singing with the second part and realized that I am struggling with giving up my ambitions, hopes and plans. I wanted to travel one day when the kids were grown up. I wanted to start a volunteer organization for young moms. I wanted time with Jeff...I want to be his focus again. I want to be a helper...a great friend...save the world. Little M is astounding and I truly believe that I have fully accepted her. I adore that baby girl and cannot imagine life without her. However, today I realized that I was missing a step in the acceptance process...I have not accepted who I am now. Lord, if my plans never come to be...may I still choose joy. May you transform my mind to accept who I am now and to be content in the life that you have given to me. If I am unable to serve others as freely because I am serving the beautiful daughter you have given me, may that be enough. May I be enough in you, Lord.

Rashes and Worktrips and Blizzards, Oh My!

Just when I think I'm finally finding balance...the moment when I actually have a moment to do something healthy for myself...life tries to smother my joy. It's great choosing joy when things aren't great in your life, but so much nicer when it comes easy because life is full of blatant reasons to be joyful. Although I guess that it is always dependent on perspective. Well, I've had a really good stretch and have actually taken a little time in the day to prepare some nutritious meals for myself rather than leftover pizza crusts and cookies, as well as start exercising. Shockingly it actually resulted in weight loss and more energy...I guess what they say is truth...but after 4 relatively stellar weeks...there are always a few hiccups, the winds of change started to blow. It started with a sudden job change for Jeff at work. We got congratulations and I did feel proud of him for being recognized at having the skills for a new job and more responsibilities...but I felt the weight of the new responsibilities. It started with two weeks of travel right away and a promise of much more to come. It also meant new dress clothes and laptop cases with no increased wage and a tight budget...although he does look very handsome in a shirt and tie. It also meant more work at home and stress for him which has a funny way of affecting me...silly love. As he headed out the door for Australia this week...I was fighting the worst cold I've had and dealing with the stress of little M's mysterious rash and night wakings. The blizzard warnings dominating the news last night tip me over the edge and I felt anxiety rise and my joy slipping away. In my creative or delusional mind, I could picture myself huddled with the children under all our blankets, rationing water until emergency crews finally rescued us from our snow encased house. Okay, rather dramatic, but that's what happens when you can't sleep and have watched a few too many weather disaster related movies. It may also have to do with the vulnerability that somehow enters the house with Jeff's exit. God continues to provide. The blizzard was a bit of a bust and we have already been plowed out twice by caring neighbours, Jeff will be home in two more days and we have been surrounded by offers of meals and help. And as for Meg's rash and my cold, both on the mend. I was humbled to be told to moisturize her skin by the doctor...apparently dry skin can worsen if not cause a rash. Hate when that happens. Balance is still far from my house these days and I'm afraid my diet is resembling the cookie model more than salads, but we are building forts and baking bread and having a lot of good moments. I still really miss Daddy, but am trying to keep on choosing joy.

Animal Talk

The boys and I were sitting at the island having a little chat yesterday when we got on the subject of where meat comes from. I've managed to simplify my answer to "from a cow or pig or chicken" in the past, but my 5 year old thought about it and asked me this time if the animal dies if you take meat from it. I tried to quickly think of a diplomatic response, but came up with only a faint yes. My 3 year old animal lover was horrified and said that they shouldn't kill animals and that he was no longer eating meat. I told him that there were other people who felt the same way and who didn't eat meat, but rather lots of fruits and vegetables and beans..etc. and that they were called vegetarians. Little H quickly replied, "but they don't live very long do they, mom?". I couldn't help laughing a bit before telling the boys that it was on the contrary...vegetarians would probably say that they are healthier and live longer...although that's probably not what Daddy would say. I've been waiting to see the aftermath and if I need to start buying tofu for Hudson, but since he's rather clueless to what item on his plate is the meat, he hasn't had any objections. I'm so interested to see what values and interests and abilities my boy's continue to have as they grow. Vegetarianism may be a stretch in this household, but we'll certainly try to support them as they try to figure out the world and grow into the men God has created them to be.

Siege on the Kitchen

Little M has hit the stage where food is spending a lot more time out of her mouth than in it. Her meals are being spit out or thrown around the kitchen. I frantically prepare a battery of bite sized soft food to offer in hopes of her acceptance. As substance after substance is refused and often in an exhaustingly messy manner, I usually retreat in defeat. Not only does this experience leave me with an increase in wasted food and dirty dishes...the child herself requires a full scrub down as well as the entire eating area. The highchair, table, wall and floor are not safe from her attack...nor am I. From having two others, I knew this stage would come, but had obviously blocked out the horrors of it! I doubt that this will test my joy, but am pretty sure it will be a great test of patience.

The Lives of Secret Agents

My two boys have been on a secret agent kick lately. They roam around the house "unlocking" items to wear as agents. This has included bracelets, sunglasses, watches, hats and continues all the way to a full winter snow suit. I love hearing them work together on their missions even though I'm realizing more and more that I'm less and less included in their world of play. For years, I've dragged my feet as they ask me to play with them and I feel the pressures of an impending dinner or smell the diapering needs of their sibling. Let's face it...I've also been really tired. Don't get me wrong...I usually make it a priority to spend some time with them each day, but it's taken on a more supervisory role and usually involves multitasking. As I'm increasingly not included in their play, I'm realizing just how quick that time goes. I've read the forwards about the dust will wait, play with you kids...and thought that's nice in theory, but you still got to get things done in a day. However, I'm wondering what my priorities would have been if I had my current perspective a couple years ago. I'm guessing there would be a little less dusting. I wish I could have fully embraced and have been present playing with my boys a little more. I'm not good at blocking out my to-do-list. Luckily they are only 3 and 5, so it's not too late. I may not love playing rescue heros and building car garages...but like I'm learning at church...it's not always about me. Although, the less they need me, the more I actually want to play. Ain't that the way. I understand that much of my time is required to handle the daily needs and appointments of my day. I simply can't always play, but I really want to be intentional when I do and show my boys that they and their priorities are also important to me. As I fill out Little H's JK registration forms...I'm realizing it really does go quickly. We need to choose joy in each moment and in the tasks that we think will never end...because they do....and we'll miss them.

Bare Foot and Happy

Well Little Miss M continues to astound us. She is definitely off to the races concerning walking. This week she has taken numerous steps and is starting to take off walking on her own when holding onto objects. She is also being protective of herself, by placing down her hands and going down on her bum. This may seem insignificant, but it has taken literally over a year of therapy to get her to use her hands and try to protect herself with them. What a success!!! We decided to put her in her running shoes tonight as therapy is tomorrow and she needs to wear her shoes there. We realized she hasn't done any of her walking wearing them, so thought we should acquaint the two. After donning her shoes, she seemed more irritable and less desiring to walk, but it was also getting close to bedtime, so I assumed it was tiredness causing the grumps. However, when I led her to the stairs to climb up them...something she is loving doing...a full out fit occurred. She climb one or two stairs and threw her body back, screaming and thrashing her body. I tried to pick her up to see if it was just exhaustion and if she wanted to be held, but not so much. Finally she started smashing her feet on the floor and I clued in that it may be the shoes. I removed her shoes...which fit by the way...and she was once again happy and proceeded to scurry up the stairs to her bath. Oh, my dear determined girl...you are just like your Papa Ken, a whole lot happier in bare feet. Here's hoping we don't have a replay at therapy tomorrow.

Update on Change

Well we've officially been attending our new church for two weeks. Week One went well thanks to a friend who tried to make some introductions and show us around. The kids all stayed in programs, so Jeff and I enjoyed a rare moment in service together. Week two was another story. I felt a little lost and isolated in a big crowd where no one seemed to care who I was. I came home in a sour mood and started doubting the switch. I've only really attended two other churches over my lifetime and both were definitely more like families. I craved the attention and concern and sense of community. I knew I would feel this way, hence Jeff and my 1 year commitment, to ride it through. As I struggled with my frustration over the day and trying to prioritize what it was I needed in a church...I clearly sensed God telling me that it wasn't about me. My interpretation was "Amber, get over yourself. It's not about you. It's about me." When I took myself out of the equation, I realized that at either church I can worship God and learn more about Him. I can also serve Him in either congregation. Yes, there is a need for fellowship, but as Jeff reminded me, I've got that already in my friends and will work on that via a small group at Bethany. So, I've simmered down and am going to keep choosing joy as I adapt to change.