What Really Counts!

Those who know us well, know that our family is not huge into athletics.  There's a huge time commitment that affects the whole family, politics and issues at times with coaches and or other players and their parents.  Swim team has been a big exception.  For one, when you live in AZ you HAVE TO learn to swim to survive the summers.  For another, it was a measurable 6 weeks that I could commit to and be done for the year.  We never pushed it, but this year Bud pushed himself and we really could see results.  His best time for backstroke beat the minimum qualifying time by 1.22 secs.  His best breastroke time was just 0.77 sec above the qualifiying time.  It was his big goal to simply qualify so he could be with his friends who have inspired him to do better.  Since he clearly beat the qualitfying time, we thought he was in for sure.  He spent days telling everyone and his friends congratulated him and all was well until just after the Fourth of July.

Pictures from the swim team party .... sugar to fill their wildest dreams!

Apparently there's a rule for the Desert Swim League that only 8 people can compete for each stroke per team in each age group.  For the 9-10 yr old boys, he did not make the top 8 scores, let alone the top ten so he could be a alternate.  There are just that many boys who swim so well in his group.  This all came crashing down less than a week before finals and it was a bitter pill to many boys, not just our Bud.

Awards ceremony

It was also a bitter pill for me as a mother.  I had been hard to get him to his extra practices and pay for the stroke classes, to attend extra swim meets to get closer to that qualifying time.  It was particularly difficult to see that disappointment deaden and dull our usually happy go-lucky boy.
He wanted to continue practices and do the last meet before the competition because he loved the company of these friends so much, but the reminders and discussions revolved around what he could have no part of it was clearly painful.  For days we'd see moments  he'd be fine and then something would bring it to his remembrance and his spirits dropped again.  It was his first truly epic disappointment and he was striving to work through it the best he could.

We talked a great deal about what it meant to be a good sport and in his heart wanted to be happy for his friends but was so pained at his disappointment that he couldn't find words to express himself.  the day of the competition he managed to put together a little video clip to send to two of his friends wishing them luck. 

Such fun horsing around with his friends!  He can't wait till next summer when he sees them again.

I was such a proud Mama at that moment.  It took strength and character to do what he did.  I asked him how he felt after the message was sent and his reply was telling," Still sad, but good too.  I can be a good friend and team member."  And that's what really counts in the end and as far as I'm concerned, he won the championships in ways no trophy could ever really commemorate!  Love you Bud!

Do's and Don't

For years there have been things said to me from strangers and well meaning friends and family for which I  found myself devoid of words, either filled with outrage or utterly dumbfounded that such insensitivity could be said.  It's high time I write this post in the hopes it will save others the pain I have experienced from such comments. and hopefully bring greater sensitivity and understanding to all.

1.  DON'T  ask if doctors know if he/she will be high functioning or if he/she will be able to live independently one day.

First off, consider how ridiculous this question is.  Can anyone honestly accurately predict any persons potential?  How would you feel if I ask just how successful or independent you child will be 20 years from now?  Honestly I know plenty of neurotypical children who don't leave home by then, does this mean they have failed?  Perhaps you might say there are extenuating circumstances.  Well lets just call our child's struggles 'long term extenuating circumstances'.  And like all circumstances, things can change, there is always new technology and therapy, living aid centers. Remember, all children, typical and non, can change, they can grow and surprise us in ways we cannot see as a parent .  First and foremost they are a being with untapped potential, their 'disabilites' are not who they are, they are simply the struggles they will have to work on throughout life.

Bubbalicious is absolutely fascinated by the guitar.

2.  DON'T minimize a special needs parent's fatigue. 

You cannot begin to imagine how lonely it is for a special needs  parent.  There is more work, longer days, endless phone calls, paperwork and meetings.  This is just the physical aspect, consider the number of worries we might have, "Is our therapist a good fit?  Is the waitlist worth the change?  What new activities/innovations, etc are out that might help with his/her tone, speech, feeding, social interactions .... the list goes on and on my friend.  Then there is the financial aspect - how much, when is it due, what is really helpful versus needful.  What might need to be set aside for this child's future.   And then if there are typical children at home there is the guilt of not being able to be there enough, to give them typical life experiences because said sibling struggles with ....

No parent of a special needs child ever wishes to list the endless responsibilities - there's the nagging fear that says we aren't loving our child enough if we dare verbalize these things.  But if you find us rolling our eyes because you cannot find 5 mins to message someone or hop on Facebook, understand that 5 minutes inattention (we are not talking about being alone, that doesn't exist in our world) doesn't come without some serious repercussions.  When we say we are tired we are tired in ways you don't know exist.

3.  DON'T put us on a pedestal.

I hate hearing people say things like, "You're amazing, I could never do what you do."  because it's simply not true.  The challenge of a special needs child came and just as with all life experiences.  We simply find ourselves doing it or dealing with it because we have no other choice. (aside from just rolling over dying)  No matter what you see we feel the inadequacies daily, hourly at times.  Hearing such 'compliments' seem to only underline our failings to ourselves and worse, we feel less able to express our struggles in an already lonely place.

Whether it's a belief in a higher being (I personally call this God) or unknown resources within our species, we are all capable of amazing things.  It's just that some of us have been placed in these circumstances and we are simply trying to do our best just as I believe you would do.  In the end even if you still think this, don't express it.

Until we received Bubby's diagnosis of autism we never really understood why he loved to swing and spin so much, it fills an actual physical need for him

So what can you do. 

1.  DO learn  to listen. 

Frankly it's won't be comfortable to listen to a special needs parent.  You're bound to want to 'fix' things that can't be fixed.  Perhaps there is a new therapy or diet you've heard of, use words like, "Have you heard of ... Would you think such and such might help?"  but never push beyond that.  In all likelihood we've probably heard through our many online forums or we are budgeting for another expense or too overwhelmed with paperwork to get to that point. 

Just listen.  We don't need the 'bright side' pointed out to us or platitudes such as 'God only gives us what we can handle' .  We NEED a friend, one who will just allow us moments of grief, complaint and fear without judging or fixing us and our families.  When we find the moments of courage to really express these things to someone it means so that we are heard.

2.  DO find practical small meaningful ways to serve us.

"Call if you need anything," is nice and all but hardly helpful.  Honestly we are working just to get by the hours and each day.  Our schedules revolve around therapies, appoinments, we always need something but can't think of it in the moment or feel too abashed to ask. It's the endless little things that get to us.  I can't begin to tell you how much gratitude I feel when I'm chasing my child down for the millionth time that day when someone takes the time to reassure the siblings left behind, to talk to them and plays with them to make them feel special.  When people offer to watch my special needs son so I can shower longer than 3 minutes, or come over and look for ways to help put my house in order. 

I've had someone offer to take the kids while my husband and I take a vacation and I'll be honest, as sweet as this is, it is more overwhelming to me than anything.  The planning, the work, then dealing with the aftermath for a child who struggles just going to a different store let alone missing his/her parents for a day or two is too much.  It's rarely convenient to serve us.  The lack of consistent presence makes it hard to you to know our needs, for our children to be comfortable with you.  It does take an investment of time and an energy to REALLY BE THERE.  Those that have, truly become the village we love and feel profoundly grateful for.

3.DO try and get to know our special needs child as a child first.

Not all Down Syndrome children are always happy, not all autistic children are unable to socially engage.  They are each individuals.  Just because I have a girlfriend who loves shoes and make-up it doesn't mean all girls will be just like her. 

Getting to know this individual may mean you find yourself doing atypical things, whether it's lying on the floor with them staring at the patterns on the ceiling, repetitively playing with an object they enjoy or imitating a sound they find pleasing.  It will rarely be a question and answer format, eye contact or touch may often be difficult but it doesn't mean they don't want to make connections too.  The need to connect is innate in all living things and is especially deep and rewarding in those who are isolated whether by diagnosis, sensory overload or simply being misunderstood. 

The work that it takes to make these relationships grow, both with the individual and the parents cannot be measured.  I have tried to convey to those who have served me and my family how much they have a place in my heart, no matter how short the duration of our time together.  They carry and lift us and ease my burden and I am blessed to have them in my life.  They are my angels!

Dory and Stitch - Autism

 We are so blessed to have so many different organizations here in Phoenix to help out families with Down Syndrome. This year we focused our fundraising activities on the Down Syndrome Network and baked sugar cookies to sell and raised around $100.  The other $100 came from spring rolls I made on two evenings. Other donations came from friends who helped us reach our goal of $600.  We are so grateful for the friends and family show us their love and support this way.



I was so proud of the oldest two who went door to door in our neighborhood selling cookies with the enthusiasm only the inexperienced and optimistic kids have.   Bug love was a little shy but she put herself out there and was so proud she helped a great cause.  Bud learned to slow down his speech and I can already see him a bright eyed missionary in the future.




Bubby tried baking on his own one day while I was upstairs folding laundry.  Apparently the baby locks on the cabinets aren't Bubby proof any more!!  We shall chalk this one up to sensory play!!  Another monkey see, monkey do - buttering bread.  I suppose buttering an entire loaf is more efficient!



I can't begin to tell how wonderful it has been to have such organizations around like Sharing Down Syndrome, Down Syndrome Network and Gigi's Playhouse.  They connect us to resources and other families and these interactions make a world of difference.  It is because of this that we've since learned that Down Syndrome can often come with other diagnosis, such as ADD or Autism.  For some time now I've wondered if some of the characteristics we see in Bubby are reflective of something more so in March we hope to talk to  a developmental pediatrician on an official diagnosis of autism.  Our wonderful therapists, sensitive to the strains of a special needs parent, have subtly hinted at this.  They know it takes time for a parent to process it, to mourn and to gather strength and information to act on the knowledge.  I wish I could say that I did not need that time, but it wouldn't be real or fair to deny it.  In the meantime we've begun the screening process for ABA or Behavioral Therapy and pray that the wait list moves quickly so we get services we are in need of.

A friend is a psychologist for a school and is sometimes placed in the position of telling parents these diagnosis.  She took some time to check in on me and I was grateful for her time and concern.  It was hard to admit that Bubbalicious was behind even on a Down Syndrome scale.  That the adorable smiles and giggles we as parents receive disappear behind a lock door as soon as ANYTHING unfamiliar  appears, eye contact is lost, and he retreats to a place that is not easily reached.  It took some time for me to realize that he is still the darling little man I love and will always love, that any additional diagnosis will only bring additional needed services.  It helped to share these thing honestly and openly.

The weight I feel is in learning more, understanding and applying another field of special needs to our busy lives feels heavy.  I have fought hard to have the balance we have now so that each child has their needs met (as much as any child can - because as parents if we are honest, we can never meet all their needs) and I feel like we've found that for the last few months.  It's been nice to sit on a plateau for a bit, but apparently it is time we climb again.  I'm not afraid.  The Lord has carried me through so much these last few years and I know He will carry me through more.  I am tired though - but there too I'm sure I will see His hand. 

Anywhere I go now the most common phrase I hear is, "You have your hands full!" and it reminds me of a shirt that says, "If you think my hands are full, you should see my heart!"  It is true, and still true even with the weight of what is coming.  Having Bubby has taught me how much I need others and somehow in the process they need me too BECAUSE of where I've been.  He has taught me to look beyond the outward appearences to the heart, just as the Lord does.  In so doing sometimes I even get a glimpse of how to communicate heart to heart.

Just today Bubby was throwing a fit like no other.  He's a solid kid and it's become rather painful when he kicks and bites.  He was frustrated at the difficulty of communicating what he wanted and at my lack of understanding.  He got most of his anger out and then I just held him.  I apologized for not understanding what he needed and said I was sorry he couldn't tell me more.  After a few minutes snuggling I offered him a cookie to soothe both our frustrated hearts and he smiled warmly and hugged me in return

 

He doesn't usually go for stuffed animals but he voluntarily hugged Dory and Stitch one day at the Mall.  He wouldn't do it with any other animal and in so many ways it fits.  He's a Stitch or Dory, just different enough that it's obvious.  On the other hand, there would be no finding of Nemo without Dory, no fuller life for Lilo without Stitch.  So it is for us.  I'm grateful for him in my life.  He adds to it in so many unexpected, beautiful ways. 

So begins our family journey into understanding autism.  Family, friendships, connections to others always move you along paths you never knew possible and since my experience thus far has been that it make me grow, learn and love more I will with faith and peace take my steps onto this path.

Innocent Beginnings

It began innocently enough. Kent and I watched a documentary "Fed Up" that focused how the diet of sugar was really the issue behind diabetes, heart disease and obesity. Since sugar intake, especially to our ADHD son was never really desirable, it just seemed like an easy given that they should watch it.  After it we came away with thoughts on seeking out 'real food' rather than 'food-like products'.

The fall festival Mortimer Farms gave Bubby the chance to explore the texture of mud!





Another morning we listed to the kids podcast Brains On.  It was a humorous and informative talk about farts (anything to catch their attention!) which mentioned that the majority of methane gas that harms our environment is actually produced by cows and the beef industry. It was a random fact I verified and lead to another rabbit trail and  to the documentary "Vegucated" which taught us that the government subsidies to the  meat industry has lead to unethical practices that harm the animals we eat, pollute our environment and make it cheaper for us to eat unhealthy diets compounding the health industriesproblems. As a family we decided to move to a vegetarian diet. The kids said they never like what I make anyways, so whether it was vegetarian or not it would make no difference! Got to love their honesty! We added to our vegetable intake (which was already shocking to begin with according to one of Kent's friends) shifted to lots of kinds of beans and egg meals.

More fun at Mortimer's.

"Conspiracy" has made the final shift. We've begun making our soy milk again, looking at ways to use it to make the yogurt we eat every morning and even try using nuts to make non- dairy cheeses.  The cream cheese we made from raw cashews and macadamias was happily injgested by everyone.


It took a lot of courage for Bug-love to feed the chickens herself but she ended up liking it.


Cracks me up, her kissy face so near a curious goat!

So suddenly the family that goes to a buffet and eat mostly meat and desserts (as my father would say - because we don't pay that kind of money for us to eat the cheap stuff!!) has suddenly stopped going out so much and become granola hippies!



Little man was a definite muddy mess after all the fun at the farm.

Having made new friends this summer with two kids who are from Honduras, we wanted to give the kids a more globally minded view of the world. We watched "One Dollar a Day" which left my children shocked with how different childhood is in many other countries. Then we watched "The True Cost" which elaborates how fast fashion has created sweatshops, destroyed the environment and our choices for what is cheap is costing humanity. Our discussion afterwards has prompted the kids to say they were okay with the idea of only getting one or two presents for birthdays or Christmas. They wanted to spend the money on experiences (like visiting our friends in Honduras) and on projects that might give back to others.




Within a few minutes my bug-love had come up with the idea of making blankets she could sell that the funds would go towards a set of books she could mail to her friend's classroom. She was so impassioned by this idea that she spent her Sunday afternoon learning how to use my sewing machine and seam ripper practicing n 'mini-blankets' from scraps of fabric I had left over. Kent and I were astounded by her drive and are curious to see where this will take her.




Threading a machine...



Education, true education should change you. Somehow in all the years from when I first crafted my philosophy of education in college with my naive ideology I had lost this vision in the onslaught of politics, standardized testing and curriculum. Here we are, homeschooling my munchkins and they showed it to me again, not in theory but in action. It's nice to know that the little bits of information can be made into lasting connections that are influencing our family's behavior. THIS is what drives me to homeschool!

We Are Their BEST Teachers and Advocates

I've debated for quite some time now whether or not to homeschool Bubby. There are so many aspects that worry me, whether I can organize myself to do it effectively without taking away from the other kids, will I have the resources at hand to help physically, emotionally, socially and academically, the list goes on. It's every special needs parent's load to carry and no matter what that just never really goes away.

It wasn't until I received the end of the school year 'gift' of a picture of Bubby at school.

I knew that he never laughed much for them, but I thought that it was his reserved nature. Looking at this picture it all became clear. He was sad, withdrawn and so terribly unhappy. I guess I should have seen the signs, how grumpy he was coming home, how disconnected and tired. I was battling the conflicting messages I was receiving from him teachers and aides, they felt he was adjusting much better this year, but on reflection I wonder if it just wasn't more of his being 'consigned to his fate' as Keila so often likes to say as of late. It was taking more work to draw him out even on the weekends at home, a certain sullenness that must have been hard to bear as a child - especially a child with no words express it.

So much of my summer has been spent researching, asking people, even attending part of the AFHE convention on homeschooling special needs. I mentioned it to all his therapists and they watched him carefully over the first few weeks of summer. Just three weeks ago all three of my therapists have said they've seen a change in him, a lightening up, a willingness to learn and engage. I saw it too, how much eye contact he would make, how playful he was again and his clear attempts at communicating his needs. It was as if he woke out of a depression of sorts and with it has come a growth that is leaps and bounds more than any IEP can truly measure. Despite my reservations it was clear to everyone that he would learn more and be happier here at home. My anxieties could not stand in the way of what was best for him, besides I have so often stated that with God all things are possible and now I simply had to put that faith to the test.

I love watching him listen to his music. His face takes on an expression depending on the mood and his movements have a certain grace that make me smile. He feels the music deeply. I've tried many times to catch him on my camera, but he freezes the moment he sees it so sadly these are the only ones I've managed that really capture how much music affects him.


In this next one you see him anticipating the change in music. He just makes me smile!

With all this, we decided to enroll him in music therapy. It seemed pretty crazy for the 5 of us to show up in a tiny room to bang on drums and sing with two other kids with special needs. It was a little harried at first but somehow my typical three have been good models for the others - especially tiny Pumpkin who loves to participate. Bubby has also settled down and often gets off my lap to jump and dance enthusiastically. I've learned how rhythm helps to calm many of the children and helps to 'order' the brain. It's all things I can add to my growing curriculum designed specifically for Bubby.

He has begun to want to play with others which is so encouraging. For the longest time we had a set of Frisbees that Isaac and I would throw to each other when the weather was cooler. Bubby must have remembered and often fished out a Tupperware lid and would throw it to the best of his ability. Once he figured out that if he gave us a turn he'd have a playmate he was all giggles and smiles. I passed it off to Pumpkin one day and though anxious as the slower pace of his sister, he allowed us all to take turns. When I had to leave to help one of the kiddos, they two continued the fun. This is what I captured on the camera.

Darned if all my kiddos aren't just so self conscious around a camera. She was laughing as loud as he was, if only I could have recorded without her seeing it!

It's not just with siblings I've seen this change, but also with other kids. One of our therapists told me of a special needs storytime at the Agave Library just 12 mins from our home. It was perfect, a smaller group with dimmer lighting and quietier place full of sensory toys, a visual calender of each activity they would do and a predictability that had Bubby at home quickly. At the end there is always some time to play with toys and friends and the circular sensory pads were his favorite. He'd lay them out like at physical therapy and jump from one to the next. This caught on with another typical kiddo who'd follow along and together, they'd laugh and clap for each other. It was all good until the other boy decided he wanted to move a pad. Bubby firmly pushed his hands away and then collected all his pads to play in another corner of the room. I reminded him to share and he grudgingly relinquished one for this little friend.

In addition I began researching water therapy. While Bubby does well with many textures, our main concern now is how he integrates all of this in doing a task. Our minds easily weed out unnecessary info like the feel of the breeze while still maintaining our focus on a task. We didn't know how well Bubby was doing with this and since water therapy gives a wealth of sensory feed back, it seemed worth the investment for an above ground pool for the whole family. Our physical therapist loaned us her large flotation device (fondly named Fishy) which Bubby loves to climb on and ride. It's working his core, arms and helping him with anticipating movement as he dips and floats. I often have him play other games like catching and tossing rings to each other or simply jumping and stopping according to instructions. It's been great fun for all of us and lots of learning for him.

He's still quite a monkey, he's figured out how the baby proofing stuff works and taught his sister as well! Our island has become their favorite place to hid and obviously everything inside had to go!

The other things that makes all of this homeschooling possible is our Kera Forrest, our newest respite worker! We were terribly sad to lose Ms. Marni, but so happy to have Kera. Incidentally Kera is Marni's sister. The transition has been a breeze thankfully. He was gigging and playing with her this morning which will make her job so much easier. I'm hoping to develop a learning schedule of sorts for her to work with him. Interspersed with doing Geminii, shapes and colors there will be lots of play and games all geared to helping him in all areas of therapies. Weekly therapies and almost daily visits with Kera in addition to our own work makes for quite a team. We are so grateful for our blessings and resources!

With all of this I can't wait to see how he blooms and grows this next year. We grow right along with him! I remember when Isaac was first born how terrified I was about being a parent. Time and experience have taught me that we are inspired as we desired to help these little beings in our care because we love them so much. We really can be their best teachers and advocates as we trust that inspiration/instinct/gut response that we feel they need and find the courage to push for it. Doors open along the way, the team grows and life is richer for it!

A New Crazy!

It's officially been six weeks since baby girl was born. I must admit that with this fourth child I feel a bit like I've been thrown under the bus! Being a first-time mom was crazy because you question everything you do. The second child fell right into my routine nicely, and I felt more confident as a mother. The third child was a game changer with the diagnosis of Down Syndrome. Despite all the new therapies and doctor appointments, I still felt able to handle the rigors of motherhood. This fourth child has me questioning my sanity! Perhaps it's because I feel like my time is divided between putting out fires that the third child is always getting into and feeding the littlest one! Regardless I want to continue our family journal so I've resorted to attempting to blog while I nurse my little girl. So I hope you will forgive my absence and be patient with my rather disjointed thoughts. It is a very honest and true reflection of all that is going on right now - it's our new crazy!

Perspective

Just prior to Labor Day I had two weeks that left such an impression on me of the power of perspective. Over seven years ago I taught piano to help ease us through the school years. I had two students back then I was rather fond of and as the years have passed I've seen them go through college and different relationships to finally find the one they wished to commit to for time and all eternity. I was truly happy to see them so filled with joy and peace in regards to their decision. Their receptions were within days of each other and had Kent and I thinking back to our beginning nearly eleven years ago. The future was so open, unknown but exciting and what was more, we had someone to share that with that would make all the experiences ever so much more meaningful.

Then the following week felt a bit like a free fall, frightening in its speed but each moment seemed to pass with such a strong impression to almost make time freeze. Two friends of mine both lost their fathers on the same day. One had just gotten back within days of seeing him in Thailand, the other who spends time with her dad ona weekly basis had spoke on the phone within less than an hour of his passing. I was hit again when I found out a friend of my had lost her baby in utero at 36 weeks. Perhaps because she was only six weeks ahead of me in pregnancy, or because she had found out back in May that her baby boy would have Down Syndrome and our little community had drawn around her as she wholeheartedly took up this new adventure - whatever the reason, it struck me deeply. I ached for all my friends knowing there was little I could do.

Suddenly it seemed that all of life IS moments, moments that can pass and be meaningless if I'm too caught up in the doing rather than the being. My petty complaints of the aches and pains of pregnancy, or the troubles of children all seemed irrelevant from an eternal point of view. I was healthy, baby girl was well, kiddos, despite some challengesare all doing good, we all had each other. What's more, I wanted to remember to enjoy that time together, for however long I'm blessed to journey with them.

So here are a few of those moments I want to remember:

Isaac:
We've struggled this last while helping him with his ADHD, and sometime it easy to focus on that rather than the beautiful things that make him who he is. With all his barely contained enthusiasm, I am often literally bowled over by his hugs in greeting, especially in my current pregnant state. And while its sometimes painful, embarrassing (especially when I'm in a dress!) I'm grateful to be loved so openly. I don't know if he'll always be this affectionate but I know his openly loving heart is a treasure to have.

Keila:
We've just recently learned that Keila's hearing is poor and are thankful to have appointments in place to help us figure it all out. The thing is, there are many funny moments that stem from this trouble, for insistence this conversation from a book we were reading with a saber tooth tiger-
Me: So something happened on earth to make the dinosaurs and saber tooth tigers go extinct
Keila: the thing is ...what makes them stink Mama? Why would they die from it? Can being too stinky kill?
Of course I try and clarify but the 'x' sound is so hard to hear that she will in exasperation s say, "STINK! That's what I said! You need to check your ears Mama!"
Or this other conversation the we had when we needed to get running shoes and church shoes, "Mama, the best kind of shopping is shoe shopping. I think I'm in love!" Meanwhile I hear smacking noises as she kisses he brand new shoes!

Elias:
One of Eli's favorite finger play is the one about the monkeys who tease the alligator. Of course the alligator snatches them right out of the tree which always brings a smile to his face. He's begun to understwnd what it means to tease and will use the sign from the song when he feels his siblings are teasing him. In turn, he has decided he can dish it out as well and loves to climb into my lap to blow raspberries on my cheek pulling back to see that he gets the appropriate response. It always turns into a war of raspberries, with wet cheeks (and sometimes bellies!) and giggles until he can't stand it anymore.

Kent:
I could not ask for a more loving father for my children. I always smile, no matter how exhausted I am as I listen to and watch him play with them. Lately it's games of chess with Isaac, with Keila he snuggles up and brushes her hair telling her of that things that bring true beauty to this adored daughter. I've not been able to pick up Eli so much with this pregnancy so the little man has learned to seek out Kent and squeals with delight at the dancing and spinning that is sure to ensue. He loves us and we know it, however brief the time he has with them during the day to spend with us he makes it mean something.

Simply put, life is good. Really its a blessing we can love, laugh, cry, tease, fight and yell at each other. I will treasure these moments. Everyone always says ow quickly time will pass and these things will be only memories so I will take them as they come, the whole roller coaster ride!

Okay With Being Human

I had the opportunity to attend the Down Syndrome Conference at the Phoenix Childrens Hospital a few weeks ago. I learned a lot and feel more prepared to get Eli ready for the preschool in the public schools in a year. Of course there was the chance to say hello to friends, love on some cutie babies and chat with Gina Johnson. She introduced to me a gal who lives in the Glendale area who is pregnant and has just discovered her baby will have DS. She is a mother of two already and it was obvious she was feeling overwhelmed. I had to admire her being there trying to take in as much information to be prepared for this new little one when I know I would have been at home just trying to process it all.

We chatted for a while, about how Gina is a force of nature and in her enthusiasm she catches you up and whirls you forward. We talked a little about our other children and then I just felt I had to tell her that in all the 'doing' not to forget to take time to mourn. That's when we both broke down and cried a little. I wanted her to know it was okay..... because it really is okay.

Mourning occurs because of loss - of an individual, a job or circumstance. Some losses aren't as obvious, like in the case of a child with Down Syndrome. You experience conflicting guilt, the instinctual fierce feeling that you love your child no matter who or what they are and yet you experience the loss of certain hopes or dreams or even images of what you picture life will be. There's fear in the open unknown. It feels as if acknowledging that feeling somehow lessens your love or taints it and makes you less of a mother when in reality all it does is to affirm our humanity. Loss is loss and mourning is the process that allows us to let go and move on to embrace a new future. No loss is unworthy of this process. I'd rather set aside the everchanging image of a perfect mother and experience it than to stay forever tied to something that may not be and miss the beauty of what will be.

That being said, I mention that things are a process and processes always take time. But I do know from experice that with mourning and with faith (and for me, particularly in God) healing occurs and what replaces it is a deep gratitude for joys and hopes experienced, and those yet to come that I could never have imagined for myself. So as cheesy as it sound, I ascribe to the popular phrase, "better to have loved and lost then never to have loved at all".

Before Eli I loved and experience the joys of two typical children, their growth and learning, just the pure joy of discovering life. With the unknown of Eli's diagnosis, I mourned those things, never knowing what and when or even if I would see those things in his life. Now I love that I have lost those expectations and in it is a new sense of wonder because nothing is taken for granted any more, no achievement is small. It is replaced by the sense of awe at life, our souls, that God can do so much with so little and that joy can be immeasurable.

Little man looking so grown up as we wait for a ride home from the dealership.

I felt I had to write this post and just to let others know its okay to mourn. Life is a journey and experiencing the moment - good or bad - and moving onward with hope is what makes the sweeter taste sweeter because I know the bitter. I'm okay being just human!

Mourning with Perspective

Yes, I've been a little absent these last two month. Between the holidays, visiting and having visitors and a few assessments for Eli I've been a little worn and in process I've decided I was in mourning.

The whole process of mourning is hard to explain. We all do it to some degree or another, it's depth varies on the experience but the one thing I've decided is very universal is the fact it not one of those deals you can just check off a list. It kind of like laundry never fully done, sometime your on top of it and other times it piles up - and it stinks. So I took a break from blogging to figuratively sort and clear through the mess.

Recently there were some major changes in our congregation. Simply put our ward had grown too large and boundaries needed to be rearranged so that the limited buildings could provide the services needed to a growing number of people. With that change Kent and I found ourselves deeply missing the weekly contact we had with some of the people that have been our adopted family these last 10 years. Not to say we don't enjoy our new ward and the possibilities of new friendships, but people knew us so well that little needed to be said and people would step in to help or serve. This was most apparent with Elias attending the nursery. Up until this point we had a lady who is the grandma of the ward who kept and eye out for him. She knew what he could eat and what to watch for, he was comfortable with her enough that we could leave him to attend our meetings and as far as we knew he was doing well. Despite not being in the same congreapgation, I think Sister Young will always be our grandma!

Here she is with Eli who has grown so comfortable with her to snuggle up right away. All of my children insist on visiting her whenever possible.

Suddenly he had new faces, more children, unfamiliar surroundings and people. It was a challenge for him so Kent and I opted to be in there to help. It was in that setting, next to his peers that kent and I finally saw clearly what makes a child with DS different. He struggled to sit, interact appropriately with peers especially during snack time and of course there was the anxiety during and after nursery he displayed. I knew cognitively that he would always be behind developmentally from his peers, but seeing it brought my fears into sharp focus.

These darling little children couldn't understand why their peer was smacking so hard in greeting, or why he enjoyed grabbing their food and throwing it around the room. What was even harder was the fact they knew that this was wrong but somehow this kid was getting away with it with only a minor reprimand. The responses from these innocent children were difficult for me to take in. I brought to the forefront some of the fears we all have for our children, will others understand them, love them, see past their weaknesses.

Here he is being his mischeiveous self!
It didnt help that only recently we had an occupational therapy assessment and Eli was placed at about an 8-9 month in development, far below where I hoped and low even by DS standards. We've fallen between the cracks of an ever changing system and not had the therapies we've needed, relying on books and others. Our middle child was struggling too, acting out and having nightmares regularly. She too had fallen through the cracks with all the time her brothers took up and was in desperate need of attention. I felt the weight of a parent who was not doing enough and it came crashing down at a difficult time of year.

Life is never quite what we picture it to be. I pictured things would be a lot more predictable, like color coded schedule, such and such will occur between the hours of 3 and 4, etc. My life had been that way before and it was how i stayed on top of things. Now I was hopelessly swimming against the tide, only to pop my head out for a breath and go back under again.

So I'm mourning my lack of competence and in forced humility I acknowledge these children were not mine first but His. Ultimately He will make up for what I do/cannot do. In the process I've realized that my reliance on God has made His presence more 'real' and as my children grow, I hope they feel that too. I pray that someday my children will see me, fully human doing the very best I can and I pray that I can let go of what I think I should be and accept that I am doing wonderful things now.

I recently met a mom at the zoo whose daughter has 2Q37 deletion syndrome. In essence her child is missing part part of chromosome 2, a random event which results certain facial features, low tone (like in children with DS) along with much other difficult symptoms including congenital heart disease and Wilms' tumor. We spotted each others children and suddenly we were strangers no more, talking about our love for them and lamenting insurance woes and feeding issues. This condition is so rare that there only about 100 known cases, though the number is growing due to social media awareness. She began a blog dedicated to her little girl and I took the time to peruse it.

Such a lively little gal! Eli, in his shy and introvert way took some time to open up but he soon followed in her footsteps, smiling and greeting everyone she took them to meet!

With all that she has going on she has not had the chance to post often and yet her small efforts have begun a support group and encouraged others to begin blogs of their own and lend support or a sympathetic ear. She may not know it or feel it, but she is doing a wonderful thing!

The experience also gave me perspective. I do and will continue to mourn certain things in this life, but I have faith that all things God will use toward something greater than my human eyes can perceive. It also gives me hope that all our efforts no matter how small will make me and ultimately my family better people - and perhaps it just reach even beyond us.

My little man trying his best to take some giant steps! Don't we all do that sometime? I'm cheering for him and his efforts all the way!

Reece's Rainbow

Ever since Elias was born, I've done a lot of research on the web, looking for resources to help us understand Down Syndrome. It's been wonderful to connect with people who know first hand some of the challenges we'll be facing and especially to know of wonderful possibilities in these children. It was through one of these sites I came to know about Reece's Rainbow, a nonprofit organization that advocates and helps with grants to adopt children with DS and other special needs.

My heart ached as I saw pictures of children all around the world listed with their differing health issues, some clearly neglected and abandoned, others who would be moved to insitutions soon if not adopted. I felt a sense of hope as I read about families in the process of adopting and needed help with the funds to bring this about. Finally I cried with joy at a few of the stories of those who had found their 'forever family'.

Annually we try to do something to 'give back' all the blessings we so richly enjoy. We try to find something meaningful for our family and something personal. The more hands on the project, the more we hope it teaches our children to see gratitude in all they have and learn to care for others around them. Reading through the differing needs of adopting families on the website has made it rather personal and as young as our children are, I hope the lessons of love and sharing will come home to them.

The other day I had all three children crying,(although with the older two I swear it sounds more like 6 children screaming!) a rarity only in that Elias is usually fairly content laying down with some toys or in his bed. I feel bad that he is carted around for grocery shopping and the activities of his siblings and that I haven't all the time to really spend with him the way I would like. When he cries and cries hard, he truly needs me. So I gathered his little body into my arms and curled up on the couch. He has a way of melting into you and will puposely tilt his head to rest on my heart. Then he gazes with an intensity that envelops with his soul. It is during these times I realize that joy is found in moments, fleeting ones that are lost if I'm too 'busy' with life. I feel so grateful that I have him and so grateful that he has me. So much of life is about connecting, people needing people and love. I wish I could give it to every one of those children with special need listed on Reece's Rainbow Since I cannot, I'll give what I can give to them and then love with all my heart my 3 children I have here now, especially my angel heart, Elias.

I adore that little face of Elias peering over Kent's shoulder at the world.