For the Days you Think you Just Aren't Good Enough

I woke up at 7:30 just like every morning, placed my feet upon the ground, but I felt heavier somehow.  My first thought was it must have been the extra cookies I had indulged in the night before, but I ate them with my eyes closed, so clearly those calories didn’t count.  It was something else and I just couldn't put my finger on it.

I stepped over my four year old son, who had weaseled his way into our room somewhere in the middle of the night, just like all the nights before.  He was absolutely angelic, like a cherub, rounded cheeks, red luscious lips, long sloped eyelashes, blond wavy hair.  Let’s forget the fact that he was still covered in tinged dirt smudges from the night before, and somehow made it into bed still wearing his day clothes.  Let’s ignore that little factoid for now.  Obviously he put himself to bed while I had my eyes closed eating cookies.  Wait, no that would make me look worse.  Clearly there was some kind of break in the space time continuum, or something else that makes me not responsible for that

I tiptoed slowly out into the hall careful not to wake him, but still dragging this extra weight I could not yet identify.  The further I walked the heavier it got, a strange little invisible weight it was.  I opened my seven year old’s door.  She was sprawled face down on a sheet-less bed, surrounded by a mess that looked as though a tornado had hit.  A tornado that had only touched down in her room? Very strange indeed.  There were bits of paper, tissue, books, clothes, and dag nab it my cookies, all around her.  Her tiny body the eye of the storm, the signal of a sleepless night in the world of autism, one that had clearly wreaked havoc on her little mind, and on my poor little house, again.  The weight pulling me down increased again.  With a deep sigh I tried to wake her.

“Time for school.”

“I’m not going,” she huffed out the side of her toneless mouth.

“Dear child, you are, let’s go.” I picked her up over my shoulder like a floppy sack of potatoes, her outfit in my other hand.  The invisible weight now pulling me down from behind, and the weight of her decisions crushing me from above, each step painfully difficult.  I make my way quietly back through the hall trying so hard to not wake any “angelic cherubs” unintentionally because Lord knows, they only stay that way in their sleep.  I make it all the way to the top of the stairs, potato sack still in hand when BAM, there at the bottom of the stairs is the four year old staring back at me, now looking like he is in deep need of an exorcism.  Seriously, how do these kids get through the house without making a single noise?

“Jelly sandwich,” he says, no “hello”, no “I love you,” no inflection, no emotion, just demands.  So it begins.

I breathe deeply, trying my best to release some of the weight that now sits on my chest, a temporary solution at best.  I flop the sack of potatoes on the couch hoping by now she has enough life in her to begin dressing herself, apparently not.  I begin drawing up meds for three of our four children, intermittently calling out things like “come on we need to get going soon,” “are you getting your shirt on?” “Please tell Mommy when I come in there that you will at least have your underwear on? Right? Hello?” Another deep breath for now.

 “Jelly Sandwich,” says the four year old.

“You will have to wait.”

“My catheter leaked all over my bed,” says the eight year old.

(Wait… where did you come in??? ugh!)

“Ok, I promise I will be right there.” I check the clock, five minutes until bus, you have got to be kidding.  I do my best to pull all the weight I am now dragging.  I move back into the living room to find that sack of potatoes is happily reading a book in her underwear.  I move in.  She stands like the girl from The Secret Garden ready for her maid to dress her, legs straight, arms out, head up, dressed in seconds flat.  We move through the rest of the routine, I feel the weight getting a little lighter for the moment.  She gets on the bus, I wave goodbye.

“Mom, my bed is wet,” says the eight year old.

“Jelly sandwich,” says the four year old.

As quickly as the weight upon me lessened it returned again.  “Hang on,” I yelled, instantly feeling guilty for my reaction.  I moved my way into my eight year olds room working as quickly as possible to help her change and change her bed, not an easy task with all of the medical interventions she has to carefully work around.  None the less, she had a clean body and clean hospital bed.  One task down.  The weight lifted again, but only for a second.

“Can I get breakfast, and can you get my backpack so I can get out of bed,” she asks?

All reasonable requests, but I realized at that point I had not woken up ready to deal with the demands of our everyday life.  It wasn't anyone’s fault, not mine, not theirs, some days it is just too much for one person to bear.  Having realized this I took another deep breath, gently pushed the hair out of her face, and whispered gently “please give Mommy a few minutes.”

I felt good about this and finally thought I had reset my day.  I worked my way out of her room having identified what the weight was.  I was feeling the burden of being overwhelmed, and simply not feeling equip emotionally or physically to handle my responsibilities.  Feeling like that especially when it comes to your children can cause an immense amount of guilt.  Nothing in my experience weighs you down quicker than guilt.

I stepped out of her room and closed the door behind.  Confronting me immediately was that curly haired boy with a burning desire for a jelly sandwich.  I picked him up and headed for the couch so that I could take a quick breather and continue trying to reset my day before it really got off to the wrong start.  As I sunk into the couch and held the warmth of my little man tight to my chest.  I felt some of the intense weight of the pressure of the guilt I was feeling ease up.  Then a voice unexpectedly entered my peace.

“Um, Mom, I overslept and missed my bus,” said the twelve year old.

(Seriously where do you guys keep coming from)?

At this point it was inevitable no matter how hard I tried I personally was not going to win at this day.  If on any level it had been allowed I just would have gone back to bed and ended the day right there, status; failed.  Clearly with; one, two, three, four children, three of which have special needs that was not going to happen.  I really had to pull myself together regardless of the fact that I wanted to let the weight of my stress pull me straight to the ground and throw a big stinking toddler tantrum at that point.  With a huge deep breath and a solid reminder that; my four year old jelly loving child had not thrown a tantrum, my seven year old with autism who had not slept all night had not thrown a tantrum, my eight year old who had to wait for a bed change had not thrown a tantrum, and the half grown boy running ramped to get ready waiting on his crazy mother who was considering having a tantrum had not himself had a tantrum, then how could I?

The fact is this life is hard, but this life is also beautiful.  We have children with special needs, children with typical needs, but we have amazing children no matter which way you look at it.  There are going to be really awful days amongst days that are really wonderful, and we can’t let the weight of those awful days drag us back from experiencing what could be waiting for us, if we just believe enough in ourselves to keep taking one more step.  There are so many days that I don't feel good enough, or strong enough for this life, but I am.  I know I am, because I did it yesterday and the day before that.  I can do it tomorrow too.

On all those days you don't feel good enough, just believe, and just take one more step.

Bessy and Harry

I'd like you to meet Bessy, She is white with some gold stripes and she is pretty huge. Bessy is our 1999 Chevy Hi top accessible van with a wheelchair lift. We purchased Bessy about 10 months ago, she was dirty, needed tires and other mechanical gizmos and gadgets, but we did not have much money so we decided to "take a Chance" so we "adopted her" and brought her home. Our search had effectively covered 3 counties, many cities and leads that just did not pan out. We finally found her, the big white hi top van with the braun lift. It needed new tires, the brakes were bad, the a/c needed to be completely overhauled. We did not realize then that we had purchased THE ORIGINAL MONEY PIT of vehicles. We woke up each morning saying a little prayer that our Big Bessy would start and carry us through the needs of the day. We did not quibble about the amount of gas she drank or the need for a emergency fund that we put aside for the moment when Bessy emergencies frowned on us.

Two days ago, Bessy decided that she needed a rest, one of many since we adopted her. Once again she decided to turn herself off and not move, worst thing was she stopped in the middle of the street and there was no way we could move her over to the side. After a few minutes of our bewilderment, the sweetest burly gentleman approached us and asked if we needed help, at least getting our lady to the side of the road. We thought he was going to bring up his truck and push but, oh how wrong we were! He went to the back of the van and without another word, pushed Bessy as my husband steered her to the side of the road!

With Bessy now safely out of the way of traffic for both her own and traffic's sake, the next "UH OH" moment occurred when we realized that the reason for the "Bessy run" was our daughter Laura's need to get to her college Spanish class to take her final. How were we going to get Laura and her power chair picked up from campus and get her back home? I spent one frantic moment in a dazed and confused state, then sprung into action, knowing her class was going to end shortly, I began calling some local cab companies in hopes that they would have a vehicle to get her home. A anxious search lead me no where. Finally I called our county transportation office hoping they might have a list of companies that had a vehicle that could get Laura home. I got the answer I needed! A cab company had just obtained 3 accessible vans but they usually booked them days in advance. That feeling of relief suddenly became even more filled with angst then originally. I explained to the dispatcher, Sheeana, that there was no other way to get my daughter home. Low and behold Sheeana showed her compassion for others. She asked for my cell number and told me that she was going to try something. What she tried was Miss Keisha, an amazing woman who felt compelled to help. She was off duty and had taken home the company van. Sheeana, thinking quickly, remembered Keisha so she made a call and within 20 minutes this caring incredible woman arrived. She first picked me up so I could help locate Laura who was waiting for us at school. Miss Keisha was an expert; she pulled out the tie downs and seat belts necessary for Laura's safety and in a quick 2 minutes had the company's van ready for Laura's ride home. She was not on duty, you could tell by her attire, pretty dress and very high heels, but that did not stop her from helping when she got the call.

On the trip home we found out that the company was instituting a special program for riders needing to feel independent enough to go to recreational places on their own. We filled out an application for Laura, which is now in process and took information to spread through the disability community here. What was a horrible moment had suddenly become one of excitement to share new support for the people in out community, as well as giving Laura the opportunity to have a new freedom for getting around!

Meanwhile, I left my husband with the van and not much else. No cell phone and a mechanic on the way that we did not even know! No joke...6 hours and $300.00 later, he drove the van home, the problem had been a small computer that does something or other to keep the van running!

We decided that we needed to step up our search for a second vehicle to "back up" Bessy. So today, after another search or 10 on Craig's list, we brought home Harry. Harry became a part of our life due to the tax return funds we were saving for just this thing! Harry is a 2002 Buick Rendezvous. He runs well, at least it seems that way! The chances of both of Bessy and Harry going down at the same time is hopefully not very good. Harry has a hitch and a wheelchair lift that goes in the back of the car so we have the ability, with a bit more difficulty, to be able to transport Laura's chair along with Laura.

I am telling this story because it is a fact of life, the needs that we face as caregivers and people with disabilities is different and more challenging and often frustrating. Although when a Miss Keisha or Miss Sheeana or the owner of the small bookstore who saw us struggling with Bessy in the heat (we live in Florida) and came out with cold water and the invitation to use his store's bathroom and a/c or the bear of a man who pushed the van out of the street...when people like these walk into your life, the moment and the struggle becomes just a little bit less frustrating and upsetting, it shows that Life has it's amazingly good moments...

Mother's Day Connection

[caption id="attachment_7270" align="alignright" width="300"] My first Mother's Day- 2006[/caption]This past weekend I celebrated my 9th Mother's Day. There is nothing I wanted more in this world than to be a mother and there is nothing I cherish more than my daughter, but Mother's Day can be a tad bitter sweet.

I have learned how to process all of my feelings like jealousy, anger and sadness when it comes to the life I expected. It took many years, but with lots of help and support I was able to come to peace with my "new normal". I still think about the things my family can't do, the things we miss out on, especially the things my daughter will never get to experience. I have learned to be happy for my friends and family that are living the lives I planned. I have learned to focus on what we DO have and what we CAN do and to celebrate EVERYTHING!

Holidays are still tough, and I think they always will be. The traditions, the pageantry, all of it is just another reminder that I'm not like my friends and family, at least not the ones I have known all my life. I am however, just like my new(ish) friends and family. I share a bond with my new community that makes us feel like we are family- sisters by circumstance.

[caption id="attachment_7279" align="alignleft" width="250"] "Snuggle Cam" Mother's Day 2015[/caption]This community, my new family, it's you- all of you! I logged on to facebook on Sunday, as I do everyday, and I started to feel a little sad as I scrolled through my newsfeed. I saw so many post of my friends with their kids out doing special things for Mother's Day. I read each post and felt happy that they were having special days, but also a little sad. However, as I continued to scroll through my feed I saw other posts that made me feel connected to the rest of the world. A connection we all long for- a way to feel like we ARE normal. Some of you, my MOM friends, were posting pics of your miracles snuggled up on your laps, tubes connected, sitting in awkward positions in order to support their needs and your faces filled with so much love. You all were doing exactly what I was doing. Snuggles with my daughter are my favorite part of the day. On some days we snuggle almost the entire time. For Mother's Day she was in a good mood and we snuggled on the couch watching chick flix and having our girl talk (she is non-verbal, but we still have our chats). It was a great day, I too was filled with so much love and I was happy. I don't know why I let the pictures of moms playing in the park with their kids make me feel like my Mother's Day was any less special. Truth be told, I think mine was MORE special. I thank all of you for reminding me of that.

I hope that all of you had a wonderful Mother's Day, and that you all got some snuggle time with your miracles.

Would I change a thing??

Some recent events that I have read or heard about got me really thinking.. If I knew what I knew now and had a choice to live with what is my now normal with my special needs child or choose to not have them at all.. Would I change a thing?? Would you??

If someone sat you down with a television in front of you and first you were able to see your life as it is now.. life with your special needs child. All the appointments, all the worry, all the unknown. Every tear, every angry at the world moment in tears and fear, angry at how unfair this is for your child and your family. Every hurt, knowing how hard it is for your child to do things that come so easily and taken for granted by others. Every stare, every rude comment, every pity look.. Every missed dinner, night out time with friends because you couldn’t leave your child or wouldn’t. Every missed moment with your spouse or missed vacations because your special needs child needed you. Financial burdens because of medications, equipment, gas to get to and from numerous appointments and therapies. Every set back. Every moment your other children miss out on with you because your special needs kiddo needs more attention and help. Constantly comparing, noticing the differences between your child and others their age and bursting into tears at any given moment because it doesn’t seem fair. But also, every cuddle, every kiss and hug. Every over the top celebration for the little things that are BIG things. Every smile. Oh that precious smile. Every sweet little moment of quiet when you watch your sleeping angel knowing they are the biggest blessing. Seeing the hearts of those you love soften and change for the better because of your child. Seeing your son or daughter with special needs LIGHT UP when they see their siblings, when they see you. Those moments when your other children sit down and cuddle with or hug or sing to or play with your special needs kiddo, seeing the love they have for them. Seeing that compassion your children have that many don’t get the opportunity to learn. Every therapist, doctor, teacher, receptionist, fellow special needs parents that you have met during this journey. Everyone of them that have talked with you, sat quiet and let you vent. Every tear shared with them and new friendships you made with them. Every moment you felt the love and support of life long friends and the care and compassion you see in them walking this journey with you, no matter how near or far they are. Every moment you spent with your spouse crying, holding each other, reassuring each other everything will be ok, and feeling that much closer to each other because of it. A bond no one can break.

The next thing you view on that screen is your life had you chose not to have had your special needs child. You see your spouse and your other children. Life is easy, well easier. Money isn’t as much of a struggle. You have a savings. You take vacations, go out to dinner. You are able to make more nights out with your friends and spouse. But life gets busy still. Soccer games, school functions. Life is “normal”..

What would you choose… a Life that is “ Normal”, or a life that is with a tougher journey?? I know some may say if they could choose they think it would be better for everyone to choose the normal. Their child wouldn’t have to grow up struggling, fighting, being hurt, treated unfair and as a parent you wouldn’t have to deal with so much hurt, sadness, anger, exhaustion.

But for me, I would choose all over again for the life I have now. I don’t believe I should have the choice, its not my choice its God’s and I believe my daughter was designed and made special for our family, to CHANGE us.. but if I had a choice I would choose our normal, our life with our special needs daughter. My daughter is a BLESSING!.. yes it makes me sad she has to struggle and work so hard to do little things. Yes it makes me angry that others put limits on her or have pity for her and for my family. Yes I am exhausted ALL THE TIME! Yes I miss out on so many get togethers with my friends and it tears me apart.. I miss them so much and hope they know I love them and want to be there. Yes money is tight. Yes my boys deserve so much more of my time and attention..BUT I am so thankful for every moment.. Every exhausting night. I am so thankful for every moment that has brought tears but also brought my husband and I closer together and made us stronger, oh so much stronger. As a couple and as individuals.. I wouldn’t trade a single smile from my baby girls face. I enjoy those moments I get to celebrate with my daughter and family and friends for little things my girl accomplishes. I enjoy sharing about my daughter and my boys with my family and friends and hearing all the amazing things their kiddos are doing.. I Love being able to share a little about my daughter with others, even strangers when they ask and then learning about someone “special” in their life.. I wouldn’t trade a single second.. Every moment with each of my children is a blessing.. I wouldn’t change it. I believe God allows some children to be born special to allow others to learn compassion, care, love and a deeper understanding of how much God loves us. My daughter I know is so much stronger and determined and loving then anyone I know because of her journey and struggles. My boys have developed a deeper love for their sister because of their journey with her. My husband and I are closer and more in love then we have ever been. This life is a journey we would choose over and over again.. Yes we wish sometimes things were easier for her.. she deserves that. We want her to be able to do things like walk and talk and sing.. but its not up to us or in our timing.. God has a plan.. I would keep every bad day, every good day.. every moment just to see that little smile and be given one of her slobbery wet kisses

What would you choose?

This post was written by guest blogger, Leanne Dillingham.

Leanne is MOM to Alyssa. Alyssa was due Jan of 2011. After issues with preterm labor and a very scary
emergency C-section, Alyssa was born on November 18th 2010, 33 weeks pregnant. Alyssa spent her first month in the NICU and had multiple issues there. When she was finally able to come home a couple weeks before Christmas, we thought the hard part was over. As time went on we noticed different things with Alyssa. She was progressing with development but very slowly. She didn't crawl till well after 2. She had genetic testing done and we found out that she has a genetic mutation that they don't have anyone else on file that has it yet. She is developmentally delayed and has microcephaly. She has seen many different doctors and therapists, and keeps us very busy. She is 4 now and she doesn't walk or really talk yet but we have faith one day she will. We are a family of faith and believe that God blessed us with this little miracle and she has taught us so much. She is such a blessing to our family and we are so thankful to be on this journey with her. She adores her big brothers and they adore her.. Life is good. Not always easy but good.

How Much can We Take?

I laid in bed wondering last night, how much one person, one human being can honestly take.  It was not supposed to be a pity party, it did not even start as a self-directed thought really, just one passing thought amongst many others I got stuck on for too long.  My mind quickly became a swirling wind that took me many places within an immeasurable amount of time.

I thought about my daughter and how many hospitalizations she has had since she was two.  I thought about the abilities she has lost, and gained, only to lose again.  I thought about the countless interventions she goes through and how at the ripe age of eight she already knows how to take care of; central lines, urinary catheters, feeding tubes, oxygen, vital sign monitors, medical syringes, and prepare blood vials for lab draws, but she shouldn’t have to.  I thought about her pain, both physical and emotional as she has experienced true “10’s” on the pain scale as well as pain that cannot be measured as her friend’s left her behind in this world after years of suffering from the same disease that she has.  How much can she possibly take?

I thought about my son who shares her genes as well, the ones that most likely caused their mitochondrial disease.  I thought about the fact that he was born having to know how to fight.  I thought about the fact that he never truly knew a moment’s peace as he experienced tachycardia even in the womb.  I thought about how being uncomfortable is the only thing he has ever known.  I thought about his first weeks and days being poked and prodded by doctors who needed to figure out why he was spitting up blood and breathing like a premature baby even though he was born on time.  I thought about the oxygen tubes and wires that he had to learn to navigate as he tried to master all of his milestones and the fact that even though he had to work extra hard to meet them, one bad illness swept them away again.  I thought about the burning fury my heart felt for my little boy then.  I thought about the fact that without a single medication our son cannot regulate his own body temperature, blood pressure, heart rate, breathing rate, or sweat response correctly, and that one pharmaceutical error could land him in the hospital.   I thought about his little lungs that never really did develop correctly and how they can cause him physical pain when he breathes from time to time.  I thought about the fact that just last week he told me his legs are always tired and have “boo boo’s,” he is only four, there is nothing right about that.  How much can he possibly take?

I thought about their siblings and what they have been through, the ups and downs of having a brother and sister who have been sick as long as they can remember.   I thought about the years in which they were constantly being handed from one friend or family member to another so that we could be in the hospital.  I thought about the events we missed.  I thought about the birthdays I had to leave in a hurry as one of their siblings crashed, or the hospital finally found a bed for them when they were ill.  I thought of the vacations that we promised the kids that ended in travesty as their siblings needed to be admitted, as it turns out you cannot take a vacation from chronic disease.  I thought about their faces as I have had to continuously tell them “one more minute I promise,” as I am securing their sister’s G-tube, drawing up meds, or repositioning their brother’s pulse oximetry probe.  I thought about the train of strangers that have been introduced to their lives as; nurse after nurse, social worker, palliative team, medical suppliers, Church members, babysitters, etc have come into our home because of their sibling’s needs.  I have thought about the sheer terror they have had as the ambulance has come for one of their siblings as they have cried “please don’t let them die,” having seen their siblings; seize, turn blue, scream out in pain, be unresponsive, and other things no child should ever have to see.  I have thought about how mature they have been and how they, like us, have held their heads high and continued to put one foot forward, but how much can they possibly take?

I thought about my husband.  I thought about the hours he puts in at work, working for both himself and the hours I can’t contribute needing to man the homefront 24/7 .  I thought about the fact that none of this was within the plans we made and yet here it is.  I thought about the fact that this is probably so much more than he bargained for; two children with a progressive disease, a wife with her own chronic illness, living nowhere near extended family so we could make a living, having the weight of the world on his shoulders.  I thought about the vows we made and how after almost 10 years he still is in it, for better or worse, richer or poor, sickness and in health.  Boy, did we nail all of those.  I thought about how proud I am of the man he is and the love he has provided for us, but I fear some days how much he can possibly take.

I thought about my village.  I thought about the many times I have had to rely on them and the many times they have been there.  I thought about the many times we have had to ask for help, and the many times we have received help without asking.  I thought about; the meals, the donations, the time spent from others, the prayers, the listening ears, and the rallying of the forces.  I thought about how when a trauma is short lived many people can rally in and rally strong, but defenses usually fall quickly only being able to take so much, it is only human nature.  I thought about the fact that our trauma is never going to go away, so how much can they possibly take?

My racing thoughts eventually ended in slumber, although I will admit, it was not exactly a restful night sleep.  I woke this morning to begin my usual routine, step by step, just as the day before.  Unusually I had a little time before my alarm so I reached for the prayer book my father had brought me that belonged to his parents long ago.  I thumbed through it’s pages searching for nothing more than just the pleasure and comfort of knowing I was touching something that they once held.

The ribbon page marker was separating pages fifty and fifty-one, the titles reading Don’t Worry and One Little Secret of a Happy Life.  “Sure,” I thought, “If only it was that easy.”  Clearly the Priest who wrote this devotional back in 1908 had no idea what would be in store for our family, and families like ours, the burdens we would carry.  Then I caught myself reading instead of allowing myself to continue the internal dialogue that could easily have erupted into the full blown self pity that brings hot and angry tears.



"We can not fight this battle continually for half a century.  But really there are no long stretches.  Life does not come to us all at one time; it comes only a day at a time… It is a blessed secret this, of living by the day.  Anyone can carry his burden, however heavy, till nightfall.  Anyone can live sweetly, patiently, lovingly, purely, until the sun goes down.  And this is all life ever means to us ­­­­– just one little day." (Lasance, Rev. F. E. 1908)

And there it was, in plain black and white text, the answer to my circular question from the night before.  All any of us can take is what we are given in a day, in that moment.  Not a being on this Earth was meant to live more than just a day at a time, to breathe more than just the air that is within our lungs upon each breath.  The pages we have already turned are the very answer to the question, “how much can we take.”  We can only take what we are given today.  So, we will all continue to step forward with our heavy loads, placing them on the bedside table each night, turning our burdens over to God, knowing that tomorrow’s little day is yet to come, and today is said and gone.

Now that is something I have faith we all can do.
-Lasance, Rev. F. E., My Prayer Book, Benzingers Brother Inc, 1908