June 27, 2013

When You See A Special Needs Child

When you see a special needs child, do you know what to do? Are you uncomfortable, not knowing whether to speak or look away?

When you see a special needs child, you can't help but stare. You think the parents don't notice as you sneak glances, but they do.

When you see a special needs child, the best thing you can do is smile. Smile really, really big at the parents and at the child. Say hello. Compliment the child's hair, or clothing, or smile, or even comment on how "cool" their medical equipment is. Because it is! It may be saving their lives, or giving them mobility. And how cool is that!

When you see a special needs child, you see tubes, and a wheelchair, and birth defects. But special needs parents see their child, their baby. And he or she is beautiful, and unique, and very, very loved. The parents are so used to the equipment that they don't even notice it anymore. They know it's what you focus on, and that makes them sad. So please try to look past it, and notice their child.

When you see a special needs parent, you don't know what to say. Should you ask about their child's medical condition or avoid the subject altogether? Parents spend countless hours researching medical information and they want others to understand. Please show that you care by asking questions. Maybe you've even done some research on your own, and that's good. But do NOT suggest "cures" or treatments to the parent. It's okay to humbly ask if they've heard of such-and-such, but please don't speak with authority on a subject the parent is truly an expert on.

When you know a special needs family, you wish that you could help. But you don't know what to do, so maybe you don't do anything at all. Short notes or email messages that simply say "thinking of you" mean the world to them. Dropping off a dessert, or fruit, or a meal is always appreciated. Gift cards in any amount, or a five dollar bill to pay for parking at the next doctor's appointment, ease some of the financial burden. Joining them for walk-a-thons or special events let them know you are with them on their journey. Every little thing you do is actually huge to special needs families.

When you see a special needs child, you think how lucky you are that your own children are "healthy." What you cannot comprehend is that special needs parents are truly thankful beyond words for the biggest blessing they have ever experienced in this life--a gift from God--their very special child.

The author is Amy Boyd, mom to Little Miss Mollypop, who has mitochondrial disease. Permission is granted to reprint all, or any part of this post.

June 20, 2013

Aubrie's 4th Birthday

Aubrie turned 4 yrs old!
   It is hard to believe that she has been in my life for 4 yrs.  Some days it seems like I have had her in my life forever, and other days it feels like she was just born.  She has brought so much laughter to my life, as she has a naturally funny personality.  She has also brought many grey hairs to my head as she has a very stubborn personality.   And boy, does she have a temper!  I honestly do not know where she gets her temper from.  Maybe it's a middle child thing?  Who knows, but it gets her in trouble, a lot!  She definitely keeps me on my toes.
   For her birthday I had this cute, little girl, summer birthday party theme all picked out.  During dinner one evening I was talking about her birthday and what we were going to do and I was telling her about the theme.  I was giving her a few choices of colors and other fun things and she says to me, "I don't want that stuff, I want pirate stuff."  WHAT?! No, this is my sweet 4 yr old girl. She should be choosing sweet girly things, not PIRATES!  As a parent, I try to let the girls be who they want to be.  I encourage certain things a little bit more then other things, but in the end they usually have the final say.  I'm not talking about major life events that they get to choose. I'm talking about what clothes they wear, what activities they want to do, what shoes, what stuffed animals they want.  Choices that they are capable of making and that are within reason.
   I started trying to make a joke out of pirates and laughing about it in hopes that I could get her to change her mind, but at the same time trying to make her think it is her idea not to have pirates (ya know, reverse psychology).  I then start looking through the party supplies book and pointing out other themes trying to get her to agree on my original theme.  Does my plan work?  Absolutely not!  She kept coming back to the pirate theme party.  Ugh!  I want cutesy, not scary for my 4 yr old girl.  As I began to give up and agree on pirates, I came across girl pirates.  I showed them to Aubrie and she jumped on board with the girl pirates.  We compromised.  She got pirates.  I got smiling skulls with bows in their "hair" and a pink and black color theme.  Here are some of the pics.
Pirate eye patch with feathers, sequins and bows. :)
Even Sadie wore an eye patch.  I tried to get her pirate grin to go along with it, but she was having nothing to do with it.  The little stinker!
Pirate sisters!!
   Aubrie also likes to play super hero.  She will tie scarfs around her neck and "fly" around the house and yard saving "wounded" stuffed animals.  Then she will turn into a Dr and fix them up.  She has the best imagination of any child that I know and can entertain herself for hours.  I love it!  So for her birthday she got superhero gear and a pet Dr kit.  She hasn't put down either one since this weekend.  All of our "animals" in the house have been saved multiple times, fixed up and feeling much better,  thanks to Dr. Super hero!
My little super hero!
  (No, I did not pose her this way. It's her natural super hero pose.)

June 13, 2013

Number 16

   Did I ever tell you that after Sadie's last hospital stay we added yet another new Dr.?  Yep, Dr #16. It is a pulmonologist, a lung/breathing Dr.  Since Sadie was diagnosed with the central apnea, they decided it was best to get a pulmonologist on bored with her care.  I agreed originally when we were in the hospital, but the closer the appt came the more I thought, no, we don't need another Dr.  We don't need a lung Dr., this is an issue with her brain.  But then again, I thought, she did have 5 months of having some sort of respiratory infection so maybe we should see them.  I decided to keep the appt and see what they have to say.
   Yesterday we went to this new Dr.  It was an uneventful appt, thank goodness.  The Dr really didn't have much to say, just told me the plan for the next year.  Sadie is going to have a home, overnight pulse ox test done sometime in August or September to make sure that the oxygen is doing what it's supposed to be doing and keeping her blood oxygen saturation up at an appropriate level while she sleeps. The other thing that we will do is have another sleep study performed sometime in the spring.  I don't really know why this is the protocol, but this is what they usually do.  I guess to make sure the first test was correct or to make sure that the child hasn't moved into obstructive apnea, too.  Who knows?!  But we will have another sleep study next March or somewhere around there.
   We also discussed all of her respiratory issues that she had over the winter.  I generally will not tell Dr's my thoughts about a situation or what other Dr's thoughts are about a situation unless the Dr that I am currently speaking with has no clue or thoughts about the situation.  I like to hear their thoughts and to see if they match that of others.  Luckily, she had the same thoughts that I do about the whole thing.  1. Given her brain malformations and the diagnoses that go a long with that she has a poor immune system, hence she will be prone to infections.  2.  Given the mito disease, her lungs are effected by not having the mitochondrial energy to breath deep enough to be able to clear her lungs.  3.  Because she has the hypotonic muscles in her core she just simply can't take deep breaths because her muscles are just to weak.
   Unfortunately, there is nothing we can do about any of those things.  So what can we do?  We are going to get some pulmonary function tests on  her (performed during a healthy time).  That will give us a baseline of how deep her breathes are, how much effort she is giving to breath, how much air is actually being exchanged, etc...  That way when she is sick, we can run the same tests and compare them.  The second thing that we will do is start to perform chest physical therapy.  All this consists of is "burping" her hard in different spots on her chest and back a couple of times a day especially when she is sick.  This just helps to move around her secretions so she doesn't get pneumonia.
   That sums up that Dr's appt.  Sweet and simple.  As much as I didn't want to add another Dr, I guess we are going to continue to follow with this Dr for at least another year.

June 12, 2013

Grace Under Fire

   Friday was the last day of school.  Growing up it was always a tradition in my family to go out and celebrate the last day of school.  So I am carrying on this tradition with my girls.  I pick Chloe up from school (1/2 day) and ask the girls what they would like to do to celebrate the end of the school year.  Chloe yells out to go to the park and Aubrie yells that she wants to go shopping at Target and then get some pizza for lunch.  Aubrie makes me laugh.  What 3 yr old wants to go shopping at Target?  Only my girls.  I agree to both.  First we went to Target and bought bathing suits and then we ate in there food court, which was pizza.  Then off to the park we went.
   We arrived at the park, Chloe and Aubrie take off.  I love this particular park because it is fenced in, only one way out and you can see everything, so I feel safe with them taking off on there own.  I'm sitting on a blanket watching the girls and attempting to exercise Sadie.  She was having nothing to do with the exercising (probably had to do with the heat) and she was letting me know how much she hated it.  I gave up that idea.  So I start one of my favorite pass times... people watching.  This pass time drives my husband nuts, but it fascinates me.  People are so interesting.
   I start to watch some toddlers.  This was probably not the best choice of people for me to be watching.  I get sad sometimes watching Sadie's peers learning to walk and climb and discover all these fun new things in the world that Sadie will eventually learn just not at the same pace as her peers.  I start to get tears welling up in my eyes and start to get all emotional.  I hate doing this in public and don't want to make a scene so I look away.   I pull myself together by watching my girls and how much fun they are having.  But I keep finding myself getting pulled back over to watching these little toddlers.  Then I start listening to their moms.  Almost all of them where complaining about having to chase their toddler, tell them no all the time, and how they are becoming so defiant, and how they are sick of fighting with their toddler.  I was honestly getting mad at these moms.  They were getting mad at their toddlers for doing toddler things.  Things that children their age are supposed to be doing.  If only they knew!!
   Then a mom was walking by after chasing her toddler down and decided to stop and talk to me and comment on Sadie.  This is our conversation.

Woman:  "You are so lucky that you don't have a toddler to chase down and fight with on this hot day.  You can just sit and relax.  But just you wait (shaking her finger at me) your time is coming.  That sweet, little sleeping infant will be off and running and she will fight you on everything".

I was quiet at first, didn't say anything.  Again tears were welling up in my eyes and I got a lump in my throat.  After a few minutes I swallowed that lump and said to her.

Me:  "I have a toddler.  She is also a strong fighter".

Woman:  "Oh, do you have more kids at home"?

I look at Sadie and smile.

Me:  "Nope, this is my toddler.  This is Sadie and she is 19 mo old". (Remind you, that her size is maybe that of a 10-12 mo old, and her hypotonic muscles make her seem younger)

The lady looked at me confused.

Woman:  "Whats wrong with her"?

Then I got mad.  I wanted to scream NOTHING IS WRONG WITH HER! Instead I bit my tongue and said sweetly and smiling,

Me: "There is nothing wrong with her, God just made at her differently and I thank him for doing so".

She gave me the weirdest look.  I was going to end it there, hoping she was going to walk away, but she just kept standing there, staring at my daughter.  Again I was getting irritated and mad and wanted to tell her to stop staring and walk away.  Then it dawned on me that God was using Sadie to teach another lesson in life.

Me:  "You see Sadie is a fighter just like your toddler.  Except she fights to learn to control her head, sit up, crawl, walk, roll over, eat, pick up a toy, sign words, regulate her temperature on hot days like today.  All the milestones and things that your little one can do naturally, my baby has to fight for.  When she is sick she even has to fight to remember to breath.  So I thank God everyday that she is a fighter.  Because if she wasn't a fighter, she would not be here with me".

The woman looked at me with tears in her eyes and apologized.

Me:  "Why are you apologizing?  There is nothing to be sorry for.  Sadie has taught me more lessons in her 19 mo of life then I have learned in my 35 yrs of life, she has taught me the true meaning of unconditional love, she has taught me how to fight and advocate and the true sense of selflessness.  I am a better person because of her.  I am a better mom to my other girls because of her.  There is absolutely no reason for you to be sorry.  In fact, you can learn something from her.  Turn around and go hug your toddler and celebrate every milestone that she has met and celebrate every milestone that she will meet and appreciate the toddler that she has become".

By this time the woman is balling her eyes out.  This truly was not my intention.  But sometimes people just need an eye opener to really appreciate what they have.  The woman leans down and hugs me, she can't say anything cause she is crying and just turns and walks away.  I watch her walk away, go pick up her little girl, hug her and start playing with her instead of yelling at her.

   As I sat there watching my girls swing, I look over at this sweet toddler sleeping and can't help but smile.  I say a quick prayer and thank God for these Angels in my life.
   But the story does not end there.  There is more.  As I'm in my own world thinking about everything that has happened this school year I feel a tap on my shoulder.  It was a young mom holding a small baby, with a 2 yr old little girl at her feet.  It was obvious that this woman had been crying.  I immediately asked if she and her kids were ok.  She replied yes.  Then she proceeds to tell me that she watched and overheard my conversation with that other woman and continues to tell me her story with her little baby and that he has special needs.  My heart ached for her.  Not because of what was going on with her baby because I knew he would be ok and filled with love from his family, but because I just remember the first few months of Sadie's life and how everything was so unclear and so emotional and seemed like such a hot mess.  Who am I kidding, it still is unclear, but I have a different feeling surrounding that unclear feeling.  It's like I am at peace with that unclear feeling.  I know that makes no sense to most people, but I'm sure there is someone out there that understands that.  At the end of the conversation she told me thank you for teaching her grace under fire and that she hopes she can handle situations with a similar confidence, grace and love as she continues her journey.
   Once upon a time this would have been an extremely uncomfortable conversation.  Both of the conversations with these 2 women would have been uncomfortable.  But now...I have Sadie to thank for this whole new set of confidence in myself and this whole new view of the world.

June 11, 2013

A Mother Warrior

"A Mother Warrior is...

A Mother who hears there is no hope for her child and, instead of retreating and mourning, breaks down walls, weaves her way through obstacles, follows her intuition even when people tell her she is crazy. She is a mother who believes in hope. A mother who believes in miracles and is able to carry on with strength and determination, even when her partner doubts her and offers no support. A mother who never gives up when she keeps hitting dead ends. These are the women who will continue to open the door so future generations of children don't have to suffer. These are the mothers with hearts of gold and shields made of the strongest armor.
I know in my heart that someday this era will be marked as an era when a group of parents fought the giants to help save their babies and future generations. Margaret Mead, the late great sociologist, once said, 'Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has.'

These are the women I walk beside proudly and whose numbers I will hope grow. We are the seekers of change. We are the seekers of truth. We are the Mother Warriors and we will never give up." 

~Jenny McCarthy

June 06, 2013


   Goals are everywhere.  People set goals for themselves all the time.  People set goals for others all the time.  Goals can be little, goals can be big.  Goals can be complex, goals can be simple.  One persons goal can be to get out of bed the next day, another persons goal can be to conquer the world the next day.  No matter what the goal is, it is always important to that individual person and to the people that love and surround that person.
   Last week, we (Sadie and I) had her IEP with her OT.  What is an IEP? It is an Individualized Education Plan.  Every child that has special needs has an IEP.  It is a list of goals that are put into place so that all caregivers are on the same page when it comes to taking care of that child.  It is looked at and reassessed every 6 mo.  I really never put to much thought into these in the past.  We work on everything whether it is written on paper or not.  Sadie's goals in the past have always been to progress to the next natural step in life.  We follow the natural progression of a baby, except at a MUCH slower pace.
   I couldn't even remember what her goals were that we set for her so when her OT brought out the list, I was pleasantly surprised.  She accomplished most of them.  They score each goal as a 1. regressed, 2. no change, 3. improving, 4. accomplished.  She received a 2 in her eating goal (probably because we did nothing in this area).  Her other goals were 3, mostly 4's!  What are the goals, you are thinking to yourself? Honestly, I can't tell you cause I don't really remember all of them (LOL, I know I'm an idiot) but the big ones were to be able to role from front to back and back to front, balance on all 4 extremities for 15 sec or more (she got a 4 on that goal, except she uses her head to help balance herself, it probably should have been a 3), and to have better head control.  Her head control is great, but only when she is laying on her stomach and pushing up on her arms, otherwise she has a ways to go.  So I was pretty proud of her for achieving these goals.
   Since Sadie did such a fantastic job on meeting these goals without me being conscious of them and deliberately working on them, we decided to up the ante on this little girl.  Her goals for the next 6 months:

1. Sadie will bear weight on her legs with assistance.  For whatever reason as soon as Sadie is put into a "standing position" she immediately draws her legs up.  Not sure why.  Pain? Neurological? Muscle, bone issue? All of the above?  Who knows!  But we are going to work on it.  Even if I can't get her a 4 on the goal, it will at least be a 3.

2. Sadie will work on fine motor skills.  Sadie doesn't really do anything with fine motors yet.  She doesn't grab at things, or pick things up, she doesn't even really bat at things that are hanging in her face on her play mat.  The only fine motor skill she can do is get a fistful of her hair and rip it out when she gets mad (hence she is almost bald on half of her head).  So we will be working on her switch button toys. (For those that don't know what these are, I'll post a video once she accomplishes this goal)

3.  Sadie will balance on all 4 extremities.  Like I said before, she can do this now, except she uses her head for a 5th point for balancing. 

4.  Sadie will take in some food orally.  This is actually a year goal, not 6 mo.  I want her to eat at least 1 meal by mouth and drink something by mouth.  Currently, she takes absolutely nothing.  This is going to be a hard goal to reach.  She is not a big fan of having anything put in her mouth, never has been.  She clamps that jaw down so fast, and she does not open it for anything.

5.  Sadie will be able to get from point A to point B.  I don't care how she accomplishes this.  She can roll, she can bottom scoot, she can crawl, or army crawl but she will get there! This is actually more of a year goal, not a 6 mo goal.  But we are going to work super hard and hopefully make this a 6 mo goal.  Honestly, she already has accomplished this, but it is only by scooting on her back and turning on her side and then repeating this over and over and over, but I want her to be off her back and getting from point A to point B.

6.  Last goal is to have complete head control in all positions.  Right now she has wonderful head control when laying on her belly, which is probably do to the fact that she LOVED to arch her back as a baby (and actually still does) so her muscles already know how it feels to be in that position and are comfortable feeling that way.  I truly believe that once this goal is met, so many more goals will start to fall into place more easily.

So as you can see Sadie will be very busy these next few months.  No summer break for her!  Her break will come when she has her surgery this fall.