Thursday, September 8, 2016
Yesterday marked seven years since the fateful day that Laynee drew her last breath on this earth.
The worst day of our lives. The best day of her life.
Labor Day weekend….September 7th…… It’s all tied up into one long week of remembering every detail of the days leading up to and then after her death. I never cease to be amazed by the startling clarity of the memories, even now, 7 years later. It’s as if there’s a movie projector in my mind and the Friday of Labor Day weekend, prompted by some unseen force, the reel begins to rewind and plays back all of the beauty of her last weekend and the horror of our first days without her.
The farther away I get from that day, the more it takes my breath away. Not in an I-can’t-bear-the-heaviness sort of way. But in an I-am-so-in-awe-of-God sort of way. I grow increasingly frustrated by own inability to articulate the emotions and the ever deepening sacredness linked to my little girl……her life, her impact, her presence with the One who created her.
Not long after Laynee was buried- the exact timing is lost in the haze of numbness that protected me in those days- a couple whose son was tragically taken from them many years ago came to visit Jim and I. They shared their own experience, their grief, their sorrow, how they navigated through the trauma and pain, how it forever changed them. This couple’s faith was deep then and even deeper now. I vividly recall sitting on the sofa with this older lady, my hand in hers and asking “how long?” How long until the pain subsides? How long until the fog retreats? How long until I can function again? How long until it no longer consumes me? How long until I am me again? How long must I bear this? I clung desperately to her words. She, this one who’d borne this pain and survived, felt like my one link to brighter days. She could fix this because she knew, really knew what I was going through.
She looked at me with deep, soulful eyes and said “You’ll never be you again. But the answer is no less than 5 years.”
I felt like she had punched me in the stomach as the air whooshed from my lungs. “5 YEARS?!?!?” “I can’t do this for 5 years! No way can I feel this, bear this, live like this for 5 years! I can’t!”
Her response, filled with so much wisdom, was simply, “You can and you will. You have to.”
Her words have come back to me time and time again. She was right. I could. I did. I had to. Slowly but surely, somewhere between 5 and 7 years the fog has retreated, the numbness has faded away. Joy has stepped up and become greater and more prevalent than sorrow. Social settings no longer debilitate me. I have become less selfish in that her peace in heaven has become more meaningful than my own desire to hold her again. My longing to have my baby back on earth with me has been completely replaced by longing to join her in heaven one day. The two are astoundingly different.
She was right also in that I’ll never be “me” again. I don’t want to be that “me” again. There were so many things that “me” didn’t know. A depth of spirituality that I never knew existed.
I am also keenly aware that, though I can’t say exactly when, I have ceased asking questions that only God has answers to. All of the “whys” and “what if’s” and “hows” are meaningless. They zap us of energy, causing anger and frustration because they are answer-less. I don’t know why God took Laynee from this earth any more than I know why the season’s change or the sun comes up in the morning. I can’t make sense of her death anymore than the fact that he created her in another woman’s womb but brought her to my arms. I don’t know why some people’s lives seem to go smoothly while other’s run topsy turvy. Life and death and living……it’s all unfathomable, too big for the human mind to comprehend.
In all the years of agonizing and wondering and pleading with the God of the universe for understanding, I have come full circle. I don't need understanding. My faith has returned to it’s purest, simplest form. The only things that I know with absolute assurance are that there is a God, there is a heaven, and my baby girl is wherever heaven is. The anwer, “because He is God,” is enough and it brings peace and freedom.
The farther away I get from my last glimpse of her beautiful face, the deeper my desire to know the God who created her, the God who holds her, the God who has carried this family through unspeakable heartache. And the more I come to know Him, the bigger He becomes and the smaller I become. The bigger he becomes the more I cannot, I simply cannot, wrap my heart, my mind, my soul around Him.
This one thing I know. He is GOD and God is good, all the time.
Monday, August 15, 2016
We woke up this morning to dark, dreary, rainy skies. We’ve had a lot of those this summer and normally I welcome the quiet that a rainy day brings, a brief respite from the physical labor that gardening and yard maintenance and everything else that summer lays at our feet. But today felt especially dark and heavy. The rain beat out a perfect tempo to the gloominess that comes from knowing summer is wrapping up. School starts in two days. It’s inevitable and so is the feeling that comes with it.
I’m ready. I’m not ready.
It goes by so fast. All good things do and summer is one of those good things. One day…. yesterday, I think….. last school year was ending. Then summer sailed by in a blur of ice cream and freeze pops, fresh produce that I walked outside and picked from my very own garden, swimming and boating, long evening walks ‘cause that’s when it’s coolest, staying up too late and skipping the boy’s baths some nights because it’s too late, letting the boys sleep late just because I can. Now we’re here, it’s today, the very last night of summer break. Tomorrow is a school night and just like that it comes to an end.
School is hard for Moise. He doesn’t love it. He has been so peaceful, so quietly content all summer. No frustration. No agitation. No agression. School brings all of these things out of him. Transitioning back to school, separating himself from me is always brutal. I’m bracing myself for what’s coming but it makes me want to cling, just a little longer, to summer.
I’m not ready.
This past week we’ve been squeezing out every last bit of summer fun.
I want to remember this summer. That this was the year that Kruz turned four and one day I turned around and realized that he’s lost the baby look and really, truly looks like the toddler he is. I want to remember that this was the summer that he hummed song after song as he played. I want to remember the countless walks the older kids and I have taken around the lake. That this was the year we learned to wake board. The many hours spent in my sister’s pool, Kruz just brave enough to sit on the steps and Moise holding his breath under water so long it scared people who’ve never seen him swim. I want to remember all the things that so often get lost in living.
Yesterday, as Jamee and I walked along the riverfront with the boys the graffiti spoke to me. It’s hard, so hard to send them back to school but I know, no matter what, they will be loved. Somehow, somewhere, sometime, they will touch someone this school year. They will make an impact on someone’s heart and leave their stamp upon someone’s soul. They will be loved because they are love.
God is good, all the time.
Thursday, July 14, 2016
We’re smack in the middle of summer, enjoying warm sunshine and soaking up as much friend and family time as we can. We kicked it off with Moise battling an upper respiratory infection that would not end. Resistant to many antibiotics, the gunk in his lungs seemed to take up residence, causing violent coughing, increased heart rate, low blood oxygen levels and an uneasiness in the pit of my gut. Moise is incredibly resilient though, and after several rounds of medication and a fierce determination to keep him out of the hospital we finally beat it and he returned to his normal self. Aside from that summer’s been fabulous.
Summer time challenges me. Round the clock caregiving and a commitment to retaining all that Moise and Kruz learn throughout the school year keeps me on my toes and leaves little room for down time. Summer school is always an option but we’ve never opted for it because I am of the belief that as long as we can maintain learning and development here at home, these boys deserve a break in the same way that any other child does. So we try to keep our calendar as free as possible, lower our expectations for what gets accomplished and try to take each moment as it comes, knowing that it’s only a season. The new school year will be here soon and then we can focus on what needs doing.
We’ve settled into a summer routine, a basic necessity for keeping things running smooth and reducing levels of agitation and frustration where the boys are concerned. I am so very grateful for the fact that both boys have taken to sleeping until around 8:30 most mornings. This gives me a few hours to get in some much needed exercise and quiet time to prepare my body, mind and heart for the day. I’ve long ago determined that quiet, alone time is way under rated. I think that I shall never again take it for granted.
Jade’s old bedroom, purple and lime walls and all, has been converted into a therapy room of sorts and it’s where we spend a large part of our mornings. We have two main summer time goals for Moise: to keep his hamstrings from getting tighter than they already are, and to retain his knowledge of braille that we’ve worked so hard to gain. We typically accomplish both from his stander. The stander stretches out his hamstrings in a long, gentle stretch. We try to have him standing for an hour each day, gradually increasing the stretch, and we work on his Braille, among other things, at the same time.
Our number one summer goal for Kruz is walking. He’s so close. My hope is to send him to school in August without his walker. There are three things that keep him from taking off on his own: balance, core strength and confidence. When we’re inside I take the walker away from him so that he can’t rely on it. We have exercises that we do for a few minutes at every diaper change to help with balance and strengthening. I’ve had to stretch my imagination a bit to build confidence. I take a soft cloth and roll it up and then wrap it around his hand so that it’s like holding onto a hand. As we walk, I gradually release my grip on the cloth so that it becomes slack and he’s walking with very little support. It may be that he will need to walk around with a rolled up cloth in his hand for awhile but that won’t bother me in the least. We also work on self feeding and other tasks that require functional use of his hands. This, admittedly, makes me feel like I’m banging my head against a wall. He vehemently resists any direction when it comes to using his hands. We play with water and beans and touchy, feely things to convince him that he can do all the things his senses tell him he can’t. We also informally continue to work on speech. There are no specific exercises set aside for this but all day long we sing and talk and play games with repetitive sounds. He has so many, many sounds that come from his mouth, if only he could form them into words. But words or no words….this boy can sing!!! Kruz is so often content to play quietly and as he plays he hums. He hums so well and so on key that we can play name that tune. There is something about his singing that humbles me in the deepest places of my being. What a beautifully pure image of joy in the face of hardships. He faces so many challenges and yet he chooses to sing every chance he gets. I want to be like that.
On the health front, we’ve been noticing a lot of redness and watering from Moise’s eyes. Last week’s appointment with his eye doctors revealed increased pressure in both eyes and a lot of inflammation in the left. While he never complains, the doctors say that he likely experiences a great deal of eye discomfort and, most likely, headaches. We’re back to using steroid drops and hoping that they help. They also informed me that there really is no point in continuing to purchase glasses for him as he’s not seeing out of them anyway. Moise, being a creature of habit, is not crazy about going without them and I haven’t decided whether or not that’s a battle I wish to fight.
While much of my summer is dedicated to meeting the learning and growing needs of our two youngest, there are plenty of other things going on as well.
Business is busy.
Jamee is working full time in radiation/oncology at the hospital and is settled into the adorable little home she purchased in March. She’s loving trying her hand with her own landscaping.
Grant often seems to be MIA as he works long hours as an almost engineer. He’s currently on a three week backpacking adventure in the Canadian Rockies. I’ll be glad when he’s home but also glad he’s taken the oppurtunity. He is developed a love for photography and I can’t wait to see the pictures he takes. I know they’ll be amazing and might have to post a few, even thought I can’t take credit for them.
Brock is working full time for our business and becoming increasingly skilled.
Jade is working full time at a local coffee shop and putting her baking talents to good use. She moved into her own sweet little apartment. She’s got a flare for decorating and that place has “Jade” stamped into every little detail. She is young lady of many talents and they shine through nearly everything she puts her hand to.
We’re enjoying plenty of fun summer time activities as well.
A sampling of some of the things we’re enjoying lately:
Little boys keeping cool under the shade tree while mom gardens. Moise’s forever love of water and Kruz’s slowly growing love for it.
Popsicles and ice cream in many form and little brother who is always up in big brother’s business.
Moise may not be able to see or hear when we’re out playing in the water but he does know a good treat when he tastes it. Those eyes though. It hurts me every time I look at them.
Lazy summer days on the boat
Keeping cool and making memories with friends and family in the water.
Adult children trying out their Christmas gift that they’ve been waiting for since December. Mastering our newest water sport….. wake boarding.
Dads teaching daughters to drive the boat.
Pulling out jackets and pants and whatever we can find stashed in the camper to keep warm on chilly evening boat rides.
Sunsets over the water that never, ever grow old. They whisper peace to me.
The peace of a quiet boating community where we forget, for just a little while, that there are really awful things going on around this world.
Quiet walks as a family.
Daughters who are still willing to camp with us and make breakfast for all. I’ve never really understood why meals are always better when we’re camping and they are better still when I’m not the cook.
Cooking up dinner over an open fire.
The Tremont Turkey Festival………Kruz tolerates it but doesn’t love it. It’s too loud, too many people, too much for his fragile senses to take in all at once.
The Tremont Turkey Festival…….where all Moise’s dreams come true.
Good friends who offer….and we accept…..to help get our young man on the rides. It’s no small task but sometimes love requires hard things.
The joy, the smiles on his face on this one night of the year. There really are no words to describe it. And the carnival workers? They never cease to amaze me with their willingness to make it work for Moise. They tend to get a bad rap but they truly appreciate Moise and his challenges and for that I adore them. They bless him and he blesses them. God’s amazing like that.
Walks through the carnival. It’s the same each year: cotton candy, lemon shake ups, corn dogs and cheap trinkets you can win if you get sucked into the spirit of it all.
Big boys who love their dad.
Kruz’s fourth birthday.
Sunday evenings spent in the yard…..playing badminton or football, relaxing and enjoying the new fire pit that Jim came home last week and announced he was making.
Evenings or weekends in the hammock
Little boys who love their daddy.
Happy summer. Make fabulous memories and enjoy today. We never know what tomorrow will bring.
God is good, all the time.
Sunday, May 29, 2016
Dear Gentleman in the Dollar General parking lot,
I’m sorry that I made you angry today. You parked a couple of parking spaces down from me and because of me you were unable to use a handicapped parking space. As you walked into the store with your cane you saw me unload my purchases, return my cart to the store and jog back to my car that was in the store’s only handicapped spot. As I jogged past you I heard you shout “there are $350 fines for people like you!” I knew exactly what you were saying and I want you to know that I understand.
To you it appeared that I was perfectly able bodied person who parked in a spot reserved for those with disabilities. You are correct. I am in excellent health. I am strong and active. I can walk and even run long distances. I do not take these things for granted. I know that they are priceless gifts and I am so very thankful them. I am also fully aware of the penalty for such an offense. I did not need that handicapped spot, but there’s something you don’t know about me. I would never, ever use a handicapped parking space unless I absolutely needed it because I know, from experience, that there aren’t enough spaces for the number of disabled people. I know also that many people do not abide by the law on this matter. If you had pulled into the parking lot just a few moments earlier you would have seen me rolling a wheelchair up the ramp of our accessible van. My 15 year old son was in that wheelchair. You would have seen me secure his wheelchair in place with straps and retractors. You see, my son has cerebral palsy and has never walked independently. For the past two and a half years he has been completely wheelchair bound. I do not need handicapped parking at all, but my son does and his wheelchair van leaves me no choice but to take the large, van accessible spots.
I didn’t respond to you when you shouted at me. Anger emanated from you and, I confess, that I felt angry too. I was angry for having been falsely accused. I have learned that when I’m angry it is often best to say nothing lest I regret the things I might say, so I just got in the van and drove away as you scowled at me. My anger continued until I remembered that I don’t know your story. I don’t know why you need to use a cane. Perhaps you are a war veteran and were injured defending my freedom. If that is the case, sir, I thank you from the bottom of my heart. Or maybe you have a disease, like MS or Parkinson’s or something else that causes great pain to your body. It may be that you’ve only recently required the use of the cane and are struggling to accept what you cannot change. Today may not have been a good day for you and you were smarting from the injustices of life only to have me, a perfectly healthy young woman, take the parking spot that you thought was rightfully yours. I understand your frustration.
This is not the first time something like this has happened to me and it probably won’t be the last. Maybe it would be better if I didn’t return my shopping cart to the designated spot so that others wouldn’t have to see me, a very fit woman, walking easily to my van. However, my parents taught me to be respectful and to always return things to their rightful place. I would prefer not sacrifice respect for the sake of appearances.
I understand hardships. I have hardships too. Mine are different than yours but they are hardships, nonetheless, and they make me feel irritable and grumpy. Just this week I had to take two of my children to the doctor’s office. The entrance was not wheelchair friendly and I had a mighty struggle getting my son in the door. By the time I got them inside I was hot and sweaty and felt like crying. If, at that moment, someone did something that I felt was unjust, I may have acted just like you did to me.
I don’t know whether or not you believe in prayer, but I do. Prayer helps me accept the things that I wish were different. It helps me find joy in the hard times. Prayer helps me love people who sometimes seem unlovable and forgive those who are never sorry. I want you to know, sir, that when I got home today I prayed for you. I forgive you for falsely accusing me because I don’t know your story, just as you do not know mine.
People Like Me
P.S. I wish you could meet my two sons in the picture below. They bring so much joy to hearts that hurt.
Thursday, May 19, 2016
I’m not typically one to get caught up in social or political issue and I’ve no intention of sharing my views here or on any other public social media. I try to keep somewhat abreast of what’s going on in our country simply because it’s my right and responsibility as an American citizen. But there is one issue that I’ve heard ad nauseam and, quite frankly, I’m sick of it.
Public Restrooms and Transgender people. I just don’t want to hear it anymore.
I reiterate, this post is not about whether or not I think transgender people should be allowed to use a the restroom of their choice. But boy oh boy am I tired of hearing all the whining about this topic. I’m tired of hearing of how it’s uncomfortable for people to use a certain restroom. I’m going way out on a limb here in saying that, regardless of whether a person walks into a men’s room or a women’s room, they can take care of business pretty quickly and quietly and be on their merry way.
Can I talk, for just a moment, about a less than ideal restroom situation?
Imagine being in a store or restaurant or park or any other public place and your 15 year old, 130+ pound son needs to be taken to the restroom or, worse yet, needs a diaper change. He’s not going to be taking himself. He can’t. He can’t walk into the bathroom or wheel his chair in. Actually, he can’t even see where the men’s or women’s room is. So he’s going into the women’s room with you. No biggie. If it’s a bathroom that you’ve never used before, you’re praying that whoever designed it has a clue about what wheelchair accessible really means. If there are other people in the bathroom, they may or may not look at you a little strangely. It there are children, the strange look is a guarantee but you don’t take offence because children are naturally curious. They’re taking in their world, learning new things. They can look, you’re okay with that. They may even ask questions, you’re okay with that too. The strange look could possibly be because there’s a boy in the girl’s bathroom but most likely it has nothing to do with gender and everything to do with the fact that he’s a 15 year old, 130+ pound boy sitting slumped over in a wheelchair and making deep guttural sounds or perhaps, on this particular day, he’s looking up at the ceiling and laughing hysterically at something only he and God can understand. When you get into the bathroom, holding the door open with one foot while you wheel him in with your hands, you instantly notice that the one handicap accessible stall is occupied by someone who isn’t in any way handicapped, they just like it because it has a little more room. So you stand and wait, praying they hurry because your son doesn’t know how to “hold it” and if he has an accident this bathroom trip is going to get a whole lot more interesting than it already is. But, at last, the stall door opens, hitting your son in the wheelchair because there’s not enough room for the door to swing open. Said non handicapped person in the handicapped stall looks at you as if she can’t imagine why you’re waiting for her when there are two other empty stalls. You’ve really inconvenienced her by waiting.You push the wheelchair into the stall and your heart plummets as you realize that it’s a narrow stall. There’s not enough room for the wheelchair and you and there’s no way your son is getting on that toilet without you. But you know what? You’re strong. You’re creative. You will find a way to get him on that toilet or die trying because you know full well what will happen if you don’t and…….well……you just don’t want to go there. And you do. You do find a way and you do get him on that toilet, the stall door probably never closed because the wheelchair was blocking it open but that’s okay. Once he does his business, you do it all over again in reverse. You get him off the toilet and into the chair and out of the stall. You don’t know how you do it but you do because that’s just what you do. You’re dripping with sweat and your clothes are frumpled and you look affright but his bladder’s empty. Mission accomplished.
If you think I’m exaggerating you’re invited to come to McDonald’s with me the next time I take my son to his favorite fast food joint.
When’s the last time you’ve heard disabled people ranting and raving about not having adequate bathroom facilities? They don’t. They don’t because life is hard for them at every turn and they know, they’ve learned, that life isn’t always fair. They don’t because they have real problems, like “how am I going to provide for my family without the use of my legs?” and “who’s going to help me get out of bed in the morning?” and “is there an elevator in this building?” and “did someone block my accessible van so that the lift won’t come down and I can’t get in?”
There are many public bathrooms that truly are accomodating to disabled individuals and those are very greatly appreciated. They are large and roomy enough for the person in the wheelchair and the caregiver. More and more public places are installing “family” bathrooms and those are fabulous but the problem of them being used by people who really don’t need them remains. Then there is the matter of diaper changing. It happens often. I am grateful that if this happens Moise has enough arm strength to hold himself in a semi standing position long enough to be changed. But have you ever wondered what a caregiver does when they need to change and adult diaper in public? Think on that a moment.
I know bathrooms. I can tell you that Culver’s and Subway in our area have fully accessible bathrooms. McDonald’s does not, therefore my son rarely gets to go to his favorite place. Potbelly’s has a horribly unaccomodating set up. Eli’s Coffee Shop in Tremont has very accessible bathrooms and that would be because I designed them. The Shoppe’s at Grand Prairie has fabulous family restrooms. Our pediatrician has terrible bathrooms but those at our eye doctor are great. Bathrooms are a big deal in the world of disablities. They have the ability to add trials to an already difficult life. But these problems are my problems, not everyone else’s. I don’t expect the whole country to change to make my life a little more comfortable.
And for the love of all that is good, don’t even get me started on handicapped parking spaces!!!
God is good, all the time.
Sunday, April 17, 2016
It's that time of year again, the end of the school year, when track is in full swing and the school year is wrapping up and we have IEP meetings.
IEP, for those who don't know, stands for Individualized Education Program. If you didn't know, prior to my telling you, what an IEP is, be thankful. That means your children mature and develop and learn right on target with other kids their age. Any child who receives any sort of special services (Speech, Reading Assistance, Physical Therapy, etc) from a school district has an IEP, which is a legal document that spells out your child's needs, how the school will provide for those needs, and how your child's progress will be evaluated. In the case of Moise and Kruz it's more of a legal book than a document. Every spring we (I and all of the people involved in his education: teachers, therapists, paraprofessionals, etc) collaborate to set the wheels in motion for the upcoming school year.
For Moise, these meetings last anywhere from 2-4 hours and there are typically 10-12 of us at the meetings. There is always a short little list of things he can do and a list longer than my arm of the many things he can't do. It's intense and without fail I leave wondering if we made the right choices, if we covered all the bases. Once upon a time these meetings for Moise were a source of great heartache for me. There's nothing quite like an IEP meeting to make you fully aware of just how wide the gap between your child and his peers is. But somewhere along the way it has become less painful. I've lowered my expectation and accepted what is and what is never going to be. The gap is no longer earth shattering. We've already had his IEP meeting and it has been determined that he will remain at Schramm Education Center next school year. I have been overall pleased with this past year. I do feel that, with the move, we lost a little in the area of academics but we gained much in the area of functional life skills, which is, at this point, of greater importance.
Kruz's meeting is set for this week and I am fully prepared for what's ahead. He's not making the progress that I'd hoped. I'm afraid...... terribly afraid.....that we (his educators and I ) are missing a piece of the very complex puzzle that is Kruz. He, like Moise, doesn't fit any sort of mold. I know that no two children are the same, they are all unique and individual and blah, blah, blah. But folks, we're talking any entirely different level of unique here. His disorder is extremely rare and virtually no one, not his doctors, therapists, nor educators, have ever heard of it, much less seen it and, quite frankly, have no clue what to do with it. Last year we set what we thought were appropriate goals for him based on his development at that time and what we thought we might be able to expect from him. We missed the mark by a long shot. Throughout the school year, I've waited and encouraged and gently nudged him, knowing full well that I couldn't expect too much at first. School was a culture shock to this sweet little one whose entire world revolved around his extreme social anxiety. His educators and I opted for sending him to our home school district based on the fact that he would have higher functioning peers to model after. We, or at least I, hoped that by being immersed in a classroom of higher functioning children he'd take off, blossom, reach for the stars. I don't need the people around the IEP table to tell me that that didn't happen. He, in fact, met very few of the goals we had set for him.
The big question is "why?" Why are we not seeing steady progress in certain areas? Are we, indeed, missing something? Is it just Kruz? Are our expectations too high? I've sounded the horn, having learned long ago that it's best not to wait until the actual meeting to voice concerns. I've spoken to each of his therapists and found that they too are scratching their heads. On a positive note, we are all in agreement that within the last month or two there has been a dramatic change in his social development. Although he hasn't met the goals, we've seen some slow progress in the area of gross motor. It is my opinion that he can walk. He just doesn't know that he can and, therefore, doesn't. Likewise, we are hearing a few more consonant sounds in the area of oral motor and speech development. But in terms of cognition and fine motor development there's been very little change in the last year. We work relentlessly on fine motor skills but it's as though there is a sort of impasse, some physical, tangible barrier that prevents him from developing in this area.
While I do feel a bit anxious about this upcoming meeting, I am hopeful. I look forward to seeing all of the facts of the last year on paper. I am hopeful that with enough brainstorming and pooling our thoughts, we'll come up with something that will work.
Meanwhile, back at the farm, we're living the way life has taught us to live.... one moment at a time. He's enjoying spring turned summer overnight, exploring the world and fishing with daddy. And we're soaking up the pure, simple joy that he radiates.
God is good, all the time.