My real blog post

This past weekend we went to my brother in law's 30th birthday party, and while standing in their kitchen I happened to notice their calendar.  It had two things on it for the entire month.  I stood in awe and amazement and perhaps a little bit of jealousy.  What I would give to only have two things on our calendar.  We have two calendars just to keep track of everything.  Our lives have become a hectic semi-organized litany of doctors appointments, OT/ST/PT therapy sessions, phone calls to medical equipment suppliers, coordination of services, driving to/from daycare and grandma's house, etc etc etc.  Throw on top of that doctor's appointments for me (with my own health issues), working full time, laundry, cleaning, cooking, dishes, grocery shopping, taking care of the house, picking up prescriptions, and trying to maintain a healthy relationship with my husband, and there are times that I don't stop moving until my head hits the pillow at night.  I do have to say that my husband helps out a TON with the housework, cooking, and cleaning, and I am very blessed to have him so I'm not doing it all alone.  Even so, I wake up in the morning completely tired, drained, and just plain exhausted.

I think sometimes its so easy for us to get caught up in the day to day activities of caring for our miracles that we forget to take care of ourselves.  We are so busy, crazy busy, that by the end of the day we are too tired to think about doing anything for us.  I think that's when the problems start to creep in.  We just go through the motions of daily life but don't really LIVE it.  Burnout, exhaustion, and functioning on auto-pilot.  Caregiver burnout is a very real thing, and should be taken as seriously as any other health issue.  Taking care of a miracle (depending on their medical situation) can be a full time job for several people put together.  Sometimes we try to take all of that on ourselves.  We have to remember we are human too, and can only do so much.  If we just go, go, go without a break, we will reach the point where someone needs to take care of us.   Sometimes, we need help.

 

And I think that's where I am.  My daughter is coming up on her 3rd birthday in December.  We have started the transition from Early Intervention over to the school district.  Meetings and paperwork abound.  We just switched formulas again, but she won't drink the new one either.  I count every calorie, every ounce she gains or loses.  Winter is coming upon us and I am nervous, will she be as sick as she was last year?  Will I miss as much work?  I am in a new job that is much more demanding of my time and energy, but we need the money so I have to do well.  My doctors are changing some of my medications around, and although I know that the end result will help me better, the change itself is always difficult.  My car is falling apart.  Money is tight.  Bills are everywhere.  My stress level is through the roof.  On top of all that, my husband and I started fighting.  A lot.  For years, 95% of our conversations have been about Elizabeth, and somewhere along the way we lost the ability to communicate about anything else without  a fight ensuing.  We have been so focused on our daughter that everything else went by the wayside.  We are now in couples therapy to work on our communication skills, and to try to learn healthy ways of dealing with the stress level in our lives.

 

So I guess the point of my rant is this:  so many times I read blog posts that are uplifting, encouraging, positive, optimistic.  Sometimes when I read those posts I feel like there's something wrong with me because I don't feel that way too.  Like, am I the only one who gets exhausted and discouraged and depressed?  Am I the only one who cries in the shower because that's where I can get 5 minutes alone?  I don't think I am ... so I wanted to do a different blog post and talk about how hard this can be sometimes.  How much other people just don't get it.  How stressed we are, how tired we are.  How overwhelming this journey can become.  How we acknowledge the strength it takes to be a MOM, but sometimes we just get so tired of having to be strong.  We want to relinquish our superhero status sometimes.  And how important I think it is that we acknowledge that.  The lives we live are not easy.

 

But at the same time, I want to stress how important it is to take care of yourself.  So often we put our children first and make sure their needs are met (as any MOM does). But in doing so, are we putting ourselves into burnout mode?  We need to occasionally take time for ourselves, and take time for our marriages/relationships.  What good am I to my daughter if I'm falling apart and exhausted?  What good are we to Elizabeth if we are fighting?  I have to put myself first sometimes so that I am able to be a better parent to her and a better wife to my husband.  We have to put our marriage first so that we can be loving, kind, attentive parents to Elizabeth.  Much easier said than done.  Although my husband and I are making a concerted effort to make time for just the two of us, and we are going to couples therapy, I have a much harder time taking care of me individually.  I am trying, though.  I go and get my nails done once a month.  A few weeks ago I got my haircut (first time in a year).  A little bit of "me" time.  I make sure I can make it to my own doctors appointments.  That's really it.  I know there is more to it than that, and I am working on taking care of me, so I can better take care of her.  I think we are all working on that.  But it's hard, it's really hard.

 

[caption id="attachment_6783" align="alignleft" width="224"] Me and my miracle, cuddling by the campfire one night when I was just terribly overwhelmed with it all, and burying my face in her hugs was all I could manage to do.[/caption]

 

So this blog post may not be uplifting, or optimistic, or enlightening.  It may not teach you anything new.  But this blog post is real, this is from my heart.  I want to acknowledge to all the MOMs out there how hard this journey is.  I have had a very rough couple of months, and I wanted to write this to let you know that you are not alone.  We all struggle, we all cry, we all are overwhelmed.  We all go through good phases and bad.  We get tired of being strong all the time, it's exhausting.  Never think you are alone.  You are surrounded by an army of MOMs who can relate to what you're going through.  Try to take some time for yourself, if you can, even if its 5 minutes a day.  Take some time for the relationships in your life so they don't disintegrate.  Recognize that its ok to have bad days, or bad weeks, but remember that it won't stay that way.  The one good thing about life is that it is always changing, so the bad we have today may be gone tomorrow.  Above all remember to take care of YOU, so that you can be the best possible MOM to your miracle.

 

And for all you MOMs having a rough time, I am sending love and hugs your way ...

Magical Places

Let me tell you about 2 magical places here in Florida. I live about 1 hour and 20 minutes from Orlando, the home of Disney, Universal, not far from Legoland and so much more. For many of our kids, these parks are merely a dream because of the difficulty and expense a trip like this would cause but there is a way for them and their families to experience the dream!.

I have been made aware of 2 awesome, magical places in Orlando that are there strictly to make sure our kids have a time they only dreamed about. The first is called Sunshine Foundation's Dream Village. Here amongst the hustle and bustle of the city is a place where our special kids and their families can come to spend a week going to theme parks and, at each day's end, they will come back to one of nine villas, designed to accommodate the entire immediately family right on the Dream Village property. These invitations are "all expenses paid" vacations and the answer to dreams of Mickey and Minnie, hot dogs and cotton candy and all things magical. The limitations are listed on the web site, Sunshine Dream Village is only available to those from somewhere in the USA. If you are interested here is the web site where you can get further information


The other place is actually in Kissemmee, Florida, a hop, skip and a jump to Disney and all the attractions in Orlando. It is called, Give Kids The World. When checking out the website, make sure to check out the story of how this awesome place began.


My husband, daughter (who has CP) and I are volunteers there. We had to go through a background check and, 2 hours of informational training. GKTW has 70 villas on premises, it accepts families from all over the world and pays all expenses, including: plane tickets, rental cars, all housing expenses one of the 70 - 6 person villas, assuring that the entire family will be able to enjoy this respite from therapies, sickness and simply have the chance to enjoy being a family together. The premises are truly magical. I can't remember it all but, there is a train that goes around the village, a pool, a pirate ship, castle, 2 restaurants, a cookie truck that goes around giving out cookies, many times there is special entertainment, a theater and so much more...and, most important, ice cream anytime you want it, even for breakfast...and a snoring tree!! Accessible buses pick the guests up and bring them to the park of their choice. In the late afternoon or evening, the guests return to GKTW from their day of fun upon their return, GKTW keeps everyone busy with special entertainment and fun things to do. There is even one designated evening which is called Parents Night Out, the volunteers provide a fun evening for the kids so that the parents can enjoy some very much needed quiet time usually GKTW provides discounts or gift cards for free dinners in Orlando.


No one can apply directly to GKTW for a visit, you must apply through and be recommended by one of the many agencies that works with GKTW, such as, Make-A-Wish or Dream Foundation. In total, applications are accepted from over 70 agencies both here and abroad. If you need to find one of the agencies, contact GKTW and they will lead you to the connection.


Please look at this information and give your child a dream to enjoy and, your family the chance to spend time together without having to be on schedule, going to doctor's appointments or brace fittings. A chance to be like every other family on a vacation together.

When I had my orientation to be a volunteer, our trainer said, "Welcome to GKTW, this is a place where you leave all your troubles outside the gate and it is your choice if you want to pick them up on the way out or remember the time you spend here and it will change your life!" That statement was meant for the volunteers and, also for the guest families.

Encouraging Gross Motor Development

From when our daughter was just a newborn, it was evident to me that she had "differences", and was going to need some (lots of) intervention to help her be the best version of herself.

During the most intense period of her early life, Sophie was seeing 19 medical specialists, and attending speech therapy, occupational therapy and physiotherapy sessions.  We were physically drained, and financially stressed.  Something had to give.  We had to make some tough decisions around where to direct our time, energy and money.

We were lucky in that Sophie's gross motor delays were not as pronounced as some of her other issues.  So we made the decision to drop physiotherapy, and replace it with “at home” and family activities to help develop her motor skills.

Don't misunderstand me.  I'm not saying that professional physiotherapy sessions are not immensely valuable, and for some children they are absolutely essential.  But we had to make choices.  And we were lucky that, while Sophie has low tone (also known as hypotonia), she was not so physically delayed as to need continued intense professional physiotherapy sessions.  But she did need intervention.  So we researched, and researched, and started to develop some ideas about how to help her at home.

I'm not a therapist.  I'm not suggesting that what helped our daughter will necessarily be appropriate for other children.  But I’d like to share some of the things we did with Sophie to help develop her body awareness and physical skills.  For some of you these ideas may be impractical, unsuitable, or plain impossible.  For others, perhaps these suggestions may give you a few more ideas to play with.  But PLEASE - check with your doctor or physio to see if these activities are suitable for your child before attempting them at home.

• Sophie was uncomfortable with touch, so we attempted to get her more comfortable through massage from when she was just a few months old.  We took it slowly.  Just a small belly rub during nappy changes.  Or rubbing her arms or legs when she would allow it.  Some lights stroking, some heavier stroking.  We also started to do joint compressions at bedtime.   These activities to increase her comfort with touch, help build neuro-connections and increase her tolerance of different sensory experiences.


• We incorporated "crossover" exercises into her daily routine.  Each time we changed her nappy, we would take her left arm and touch it to her right foot, then take her right arm and touch it to her left foot.  Repeat, repeat, repeat.  This was to help her with “crossing the midline”, which is important in bilateral coordination.


• At least four or five time a day we would take her little arms and gently try to pull her up to sitting, supporting her head as necessary.  We did this to help build her abdominal and neck strength.


• We took her to Gymboree. We enrolled her in a session with kids slightly younger than her, so her physical delays wouldn’t be so evident, and she wouldn’t be frustrated by her inability to “keep up”.


• We took her to playgrounds.  All the time.  At first she needed much more supervision than the other kids of her age.  We had to be directly within arms-reach, or hands on.  Over time, her confidence and abilities grew.


• We went camping. Often.  Camping was especially great once Sophie started to be able to walk, as the different textures and gradients of the environment challenged her skills in balance and proprioception.  Hills, grassy places, sandy spots, rocks, pebbles, tree roots and twigs.  Puddles . Creeks and water holes.  
  
  We noticed a definite "leap"  in her physical abilities each and every time we took her camping.  So we took her, even when packing the car seemed impossible.  Even when the mere prospect of leaving the house filled me with dread. We had always loved camping, but the exhaustion of sleep deprivation certainly didn't make it an appealing idea in the first couple of years.  Luckily the rewards always outweighed the effort, and I have no doubt that all of Sophie's camping experiences have not only improved her motor skills, but also helped her with her sensory issues and socialisation.




• My husband did a lot of work around proprioceptive awareness from when Sophie was only a couple of months old, including rocking her from side to side, lifting her high into the air and lowering her down to the ground, spinning her and rocking her.



• My husband carried Sophie in a backpack before she could hold herself up, tucking her in tightly with towels.



• Before Sophie was strong enough to hold herself up, we tucked her into her highchair with bath towels, so she could experience eating while sitting.



• Once she was able to sit, we bought her a tiger Zooba, which we have always called her "bouncy tiger" . Sophie sat on that at a children's low table for all meals (and still does).  The Zooba required her to continually shift balance and helped to develop her core strength.*



• Once Sophie could stand with support we bought her a mini trampoline with a handle,  and she was only allowed to watch TV if standing on the trampoline.  Even before she could bounce, the gentle movement of the sprung base required her to continually readjust her balance.

Thanks to the financial support of my parents, we were able to start Sophie with an excellent private Occupational Therapist when she was two years old. Robyn Simms worked (and continues to work) on fine motor skills and play skills with Sophie, but she also worked on her gross motor skills.  Thanks to Robyn our repertoire of "tools" with which to help Sophie grew.

• We started to sit Sophie on a Swiss Ball, holding her by the hips, and moving the ball from side to side.


• As she grew in confidence, we would lie her on her tummy over the Swiss ball, tipping it one way until her head nearly touched the floor, then pulling it back until her feet were nearly touching the floor.


• As her strength grew, we held her by the feet and put an object just out of reach, then rolled the ball forwards so she could reach out to grab the toy.


• When she was strong enough, we progressed on to holding her feet in the air while she supported herself on her arms, and moved forwards  "wheelbarrow" style.


• We used a scooterboard to develop her core strength. At first we had her sit upright on the board, and gently moved it around, to assist with developing her core strength and balance.  As she grew more confident we progressed to more difficult exercises – for example having her lie on her tummy, while we pulled the board around.  She is now able to lie on her tummy and use her arms to drag herself around on the board.


• We bought mini three wheel tricycles without pedals and of different heights, including a scuttlebug.  This required her to develop the strength in her thighs and core in order to propel them forwards.





• We bought three second hand slides of varying heights and angles, to help her with climbing and overcoming her fear of sliding.


• 
  We bought balls of all different shapes and sizes, and practiced rolling them to her, and getting her to roll them back, then progressed to throwing and, finally, kicking.  A "knobbly" ball was particularly good when we started off, as the protruding bits give more grip and more sensory feedback.


• We installed a sandpit in the backyard, a swing, a climbing cubby and a rocking toy.

Almost all of these items were bought second hand or gifted to us, so the costs were kept low, while our house looked like a gymnasium!  Toy libraries are also a good option for when funds are low.

At the age of just three Sophie started horse riding with Riding for the Disabled. Thankfully the costs for this were low, as the center is run by volunteers and subsidised by donations and some government funding.  She screamed her way through most of the first few sessions, but thanks to the gentle care of the volunteers she soon lost her fear and began to thoroughly enjoy her sessions. Hippotherapy (horse riding therapy) has helped tremendously with her poor posture, curved back, low tone and sense of proprioception (balance and awareness of body in space).  It has also significantly increased her confidence and willingness to try new things.


Developing her physical skills and confidence was (and continues to be) a team effort. Sophie stays with my parents for two days each week, and they diligently work with her.  We incorporate "physio exercises" into Sophie's day, each and every day, but under the guise of "play".

Sometimes Sophie is reluctant and fearful to try new physical challenges.  "All done now" was a phrase she used often. And sometimes tears flowed. But despite her trepidation, with gentle and continued encouragement she would always” give it a go” in the end.  She showed (and continues to show) so much courage and perseverance.  Those are qualities I admire in her so much, and qualities that I'm sure will stand her in good stead throughout her life.

In terms of Sophie's challenges, her gross motor development is currently the least of our concerns.  That's not to say she doesn't have delays, and that continued intervention is not required.  It's just that in the grand scheme of things, we know she will be "okay" in this regard.   She may not ever be the fastest swimmer, or the most graceful dancer, but she has good enough mobility that it no longer interferes with her capacity to join in on the playground.  She can enjoy the delights of trampolines, and slippery slides, climbing, and playing "can't catch me".  And really, that's what matters.

At five years old, Sophie is still more physically frail and clumsy than other kids her age.  But now when she falls, rather than tears or hysteria, she just laughs and gets straight back up again.  A wonderful lesson for me to take on board...when you fall..laugh and get back up...keep trying, and never give up!

I hope these ideas may give you some inspiration.

If you would like to read more about our journey, I'd be delighted if you took a look at my blog about Sophie.

* Please note, the Zooba  is not currently available in the United States, but the product has been licensed, and creators of the product are currently in negotiations with a distributor in the United States.  Zoobas are expected to be available soon in the United States.  For more information, you can contact the creators via the website link.  If you are reading this post and wish to purchase a Zooba, they are offering a 5% discount if you quote this reference...MOMGM1

In the US you can purchase a Rody Pony, that is very similar to the Zooba Tiger.