I am very late with this post, but better late than never!!!!!!!!!!!!!!!
I tend to get a wee bit emotional when I think back to the day Leah was born, so I decided to to a blast from the past with one of my older post….. Leah my baby we have hit a huge milestone in your life, you are 3 years old , we have been through so much this past 3 years, but if there is one thing we know for sure we love more and more with each passing day.
The “Special needs mom”
2008 March 4 by Charmaine
This question “What is it like being a special needs mom” was asked over at “What is Normal” at the time I could not find the words to answer that particular question to the best of my ability, but God must have really wanted me to answer that question because today, I was asked the very same question again!! So that is the inspiration for todays post.
Were do I begin, lets start with the truth, Its not easy, If I think back to some of the many emotions I felt from the time Leah was born they start at FEAR, JOY, ANGER, DENIAL, ACCEPTANCE and finally realizing that this little life is totally dependent on you, and its up to you to gear yourself with as much information and support to carry you through each day. So I had to realize that I had to take things one day at a time.
If there is one thing I know for sure God makes no mistakes, I know Leah was given to us for a reason, before I found out I was pregnant my husband and I were living life past each other, he would be doing his thing and I would be doing mine, my girls were at a age were they were also doing their thing and our idea of quality time was taking the kids to restaurants for Sunday lunch, or visiting friend while all the kids played in the back yard, we thought our lives were complete and we had everything we needed. When we found out at my 20 week scan that there was a problem with Leah, my first thought was why was this happen to me? Is it because I never spent enough time concentration on my spiritual life, did I do something wrong? Why was I being punished?!!!!! I cried for days, I was inconsolable and I mentally tried to detach myself from the baby that was growing inside me.
The turning point for me was my Fetal Abnormality Scan, instead of a little black figure squirming around on the screen, I saw Leah in 3D, I will never forget her face and seeing the blood pumping through her veins, seeing her heart beating so hard its as if she was running a race, I then realized the magnitude of this little human being growing inside me, I felt guilty for not wanting to feel anything for her, I realized all she had in order to survive was me. As I left the hospital I remember putting my hand on my tummy and sobbing as I asked God to forgive me for those thoughts of not wanting my child, I was a new mommy after that appointment, I realized that we were all in this together, we needed to unite as a family and I accepted my child and loved my child no matter what was to come our way.
It hasn’t been easy, it’s challenging because you faced with so many obstacles, in Leah’s case we were not informed of all the health issues that surround Achondroplasia, but we will face those challenges, and we will work through them.
I would not change a thing about my life today and neither would the rest of my family, I am constantly amazed at how this little person has brought our family together, we know see life through different eyes and sometimes my husband reminds me of how we THOUGHT we were complete, little did we know that Leah was the missing piece of our puzzle. We have lost some of our old friends, but we have gained a new family, we have met the most amazing people and we have shared in their pain, we shed tears for baby Theo and Little Avery, we felt as if they were part of us, and we prayed together when Knoah was ill and we speak of these people as if we have known them for a lifetime, we make a point of trying to visit all our little friends blogs just to keep up-to-date with the progress everyone is making, and its a good feeling to see how all these families have embraced life and deal with all sorts of issues and still remain positive and happy while doing so.
There will be fears, and there will be tears but I would not have it any other way, for me being a “special needs mom” has made me more tolerant, taught me the meaning of patients, grown my relationship with God, and made me appreciate life, love and family and I thank God for my Little Leah, and the friends we have made along the way.
In the sprit of Dwarfism Awareness I though I would introduce you to some special little friends living in South Africa
My name is Pamela, I got married to Mick when I was 24 and two years later I feel pregnant with twin girls. It was quite a challenge, but we managed. When my daughters where 5 years old, Mick and I decided to try for another baby – I really wanted to have one baby that I could enjoy. We tried for quite long, and I didn’t want to go on any medication, because I was really worried about having another set of twins.
Three years later we got it right and I was really over the moon with joy. The doctor confirmed that I was pregnant and it was just one baby, so now it was a race to find a name that all four of us loved. At about 3 months we went on holiday, and I remember seeing at least 5 special needs children with their families on holiday, I told Mick how I thought this was a sign that something is not right with our baby – he told me it is just normal for me to worry about the baby. But still I had this feeling that all was not well. At 27 weeks, the doctor saw problems – and told me that the baby’s arms and legs had stopped growing – ‘what does that mean???’ I had never heard of such a thing, that is just ridiculous!!! I wasn’t worried about Down syndrome, because I had had all the tests and all were fine. Then the word ‘Dwarf’ came up, and I was sent to a specialist that confirmed my baby was going to be a dwarf with a condition called Achondroplasia. I really can’t explain the shock I was in, we knew nothing about this condition and I think I had seen maybe 1 or 2 dwarfs in my entire life. Naturally we started gathering information from the internet, and then realized it was not such a terrible disability.
The last few months of my pregnancy were really bad, I was so worried that my other daughter’s were not going to accept her, I was worried about was she was going to look like. I was worried about her mentally, and with all the hormones raging – I cried for three months straight. My husband didn’t know what to do with me. Then the day finally arrived and the moment she was born the room, which was full with nurses and doctors, went completely silent… I could only hear my voice asking ‘Is she alright?’ No one would answer me. Then I looked at her and she looked completely normal, I think everyone was shocked that she looked like any other new born baby. The only thing we notice was her tiny little hands, her little fingers and palms where short and fat, non-the-less, they were the most gorgeous hands I had ever seen. We all fell in love with her immediately, she was just as gorgeous and my other two darlings.
Other than Valentina having yellow jaundice, everything was pretty normal in the beginning. At 6 weeks we went to the Geneticist, Mick and I didn’t want to do the blood tests on her – thinking what ever she will be, she will be. The diagnosis was either a severe case of hypocondroplasia or a mild case of achondroplasia. We were really happy with this, and were given a list of symptoms. I battled to find growth charts and milestone charts, but realized early on that her muscle tone was not great, so we started with physio and a lot of other activities for her. Her first operation was of grommets and removing her adenoids at 8 months, which went really well and made a huge difference. A big concern was her spine, initially it was confirmed that she had scoliosis and kyphosis, but both were not very bad, and were just to be monitored. At about 12 months the kyphosis started looking really bad, and I struggled to get a straight answer from all the doctors I had seen. After months of searching for a doctor that knew something, I found a professor that specialized in congenital spinal conditions. He assured us all was fine and it was just her bones growing at a different rate. I was overjoyed.
It has been a really long road and a lot of doctor’s visits, Geneticist visits, lots of x-rays and one operation so far, but what has touched me the most has been the overwhelming support I have received from my family and friends. Don’t get me wrong, there have been many hurtful comments and remarks, but mostly it has been really good. People are far more willing to except differences than I thought. I really try to be open and upfront with Valentina’s bone condition, but sometimes you really don’t feel like opening up and discussing it all the time. I am lucky to have a handful of people that I can turn to if I have had a bad day, mostly my sister which has been a wonderful pillar of support. It is also sometimes really hard to see children of her age and younger doing what they do, and seeing how far behind she is, but it is something I have to get used to. I often find myself looking at other babies and admiring their long arms, long legs and beautifully straight spines and think I never noticed that before Valentina was born. I know she will be able to do what ever it is that she wants to, but as a mother – knowing her battles ahead just to do day to day things is really heart breaking.
As Valentina grew, we notice that she is really a shining light – everyone that meets her falls in love with her instantly. Her blue eyes and gorgeous smile captivates everyone’s heart. Now that she is 15 months old and I look back on the past two years, I have grown as a human being because of her. There has been such hard times, and a lot of soul searching – many tears and questions. But I think our family has become a lot stronger and a lot closer because of our experience. At the moment I am just trying to enjoy my three girls, and I know there will still be hard time in the future, but I will worry about them as they arise. Over all I am looking forward to our future
Pamela and Valentina
It saddens me that dwarfism is not of much importance in South Africa, we are constantly bombarded with media supporting cancer, the physically disabled and so much more. Don’t get me wrong , im no saying that its a bad thing I am all for support, education and raising awareness but as far as Dwarfism goes its still swept under the carpet and not spoken of.
I think its great that Little People of America has officially announced October as Dwarfism Awareness month, and in the spirit of wanting to raise awareness in South Africa I have decided to declare it Dwarfism Awareness month in South Africa . I figure why not join in the fun and go out full force and try to decreases the ignorance that still runs deep South Africa today. Little people have as much right to life and respect as any other “normal” person.
I would like you to meet beautiful little Alex Pasqualli who lives in Cape Town , she is an amazing little girl, with a big heart and I think her parents are doing an amazing job. So in the spirit of Dwarfism Awareness month I decided to post this video so everyone has a chance to meet Alex and at the same time you get to see the beauty of Africa that surround us. Every word in this video is so true, and I pray that someday all this will change.
I enjoy being the mom of three girls, I am what you could call your typical “Girls girl” I have a passion for nails hair and make up clothing, bags, shoes…oohhhh yes I can shop for shoes… At the end of a shopping trip with me you would need new shoes. I guess my love for all things girly rubs off on my girls, and I notice Leah is a true moms little girly!!!!!!! If im doing make-up she want her make applied if im doing nails she wants those little nails done, there are times when she does her own nail paint and she gets angry when she smudges… which happens all the time because that fine motor coordination is still busy tuning (so mom always has polish remover in the house) and she love lip gloss the glossier the better so mom always has to wash the walls because at a lower level of wall space around the house you will find little lip prints often leading to the kitchen and stopping at the sweetie cupboard.
Leah loves having her hair styled (but she hate the wash) and we often sport around with one, or two pig tales, and there are times when we get a bit adventurous, she just loves it when I stick in some colored hair pieces (which I use on my photo shoots), at the moment her favorite is the blond and blue, so don’t worry its just a hair piece in the picture below no hair dye was used during the making of this post!!!!
We have reached a point where sometimes she does not want to wear clothing I set our for her and she sometimes chooses her own outfits which to me seem a bit Avant-Garde at times!!!!! But I guess she is becoming her own little person. I just love the look of excitement on her face when I get her a new clothing item, she just rips off whatever she is wearing at the current time in order to try on the new clothes, only problem is once the new clothes are on we have a struggle trying to get her to take it off!!! And because most of her new things are for the up and coming summer, it’s still a bit cold to be prancing around in summer gear. Because of our little body and head size we have no alternative but to try before we can buy …as all our little people moms know not everything out there is a good fit because clothing is made for average height humans… and unfortunately South Africa does not have a store that caters for little people. So our struggle at the moment is to find clothing, which has a stretchy, or buttoned neck hole, and some clothes we need to send for altering which cost quite a pretty penny. So I think I need to get my sewing skills up and running who knows Leah could soon be the proud owner of her very own little people designer fashion range… hmmm “little L haute couture”
Being the mother of a special needs child has to be one of the most challenging things to deal with in life. I remember when I was a little girl, I dreamt about my perfect wedding, the perfect house my perfect children. I’m sure that this is the dream of most little girls.
Well… things don’t always seem to work out the way you want them to. I was 20 years old and unmarried when I had Simone, I met Ashley and we fell in love and got married when I was 4 months pregnant with Nicole!!!!! (Sorry mom. Ha ha)we nevr had a honeymoon let alone a family vacation!!!!!!!!!!!! Ashley and I thought we were done with being “new parents” along came Leah, and we were given the news that she has Achondroplasia. After all this and lots of soul searching and tears I realize I can proudly say I have no regrets about the way things has turned out, this was and is the plan set out for my life and my children came into my life with perfect timing each of them giving me a valuable lessons in life and love. I know in my heart that Leah was sent to my family with a specific cause. She has taught us the meaning of unconditional love, support and acceptance. So on the whole my life could not be more PERFECT, and if I had to live it all over again I would not change a thing. (Okay one thing …….. maybe I would be a bit thinner!!!!!!!!!!!)
Leah’s Achobdroplasia has made us more aware of the day to day issues people with disabilities have to deal with, it has also made me realize what parents of special needs children go through on an emotional level. After Leah’s birth I was pretty much left in the dark I did have a chat with a genetic counselor but was informed of all the things that “can go wrong” with kids that have Dwarfism and this left me utterly traumatized, fortunately I met Tonya from “What is Normal” now “Knoahs Ark” and from there I was introduces to all the other Little People Blog moms and dads, it is there were I found my priceless support and information. One year after Leah’s birth I plucked up enough courage to start “Raising Leah” with the goal of raising dwarfism awareness in South Africa and to let new moms and dad see that life can be very normal even if your child has a special need.
I have met the most amazing people over the past 2 years; we have been there for each other through happy and sad times. I have learned to appreciate life on a different level and to take one day at a time. I know that the future holds many challenges and as Leah gains more understanding there are going to be difficult questions ahead, but If I dwell on the future im going to consume so much energy trying to plan for something that might turn out to be totally different to what I am expecting…. So I say to heck with that, we will deal with those issues as they arrive and for now im going to enjoy my girls while they are still mine to enjoy, pretty soon they will be all grown up and they wont need mom and dad as much as they do now.
So my mission for now is to raise awareness about Dwarfism especially in South Africa, besides our blog, Leah’s story has been featured in 4 leading magazines with the hope to inspire and make people aware of what dwarfism is and the challenges individuals face living with this condition. I would like people to realize that little people have as much right to a “normal” life as any other average height person. I have to admit that I do get annoyed with parents who decide to enroll their achon kids in special school because they believe that their child will be subjected to teasing in a mainstream school situation. You as a parent need to take a stand and raise the issue with the teachers and students and the parents of the school even if it means addressing your grievances in a meeting with the whole school. The public needs to be made aware and its not going to help your child cope in the real world if you shy away from society, after all your child learns from you, and if you the parent believes in your child they will definitely start to believe in themselves and they will know that they can achieve anything possible in life.
Its been a hectic past few weeks at home, work seems to be busy and I like that because the days seems to fly past, nothing worse than a dragging work day. The other thing I have realized is that we are way past the half mark of the year!!!! Wow pretty soon it will be time to dust off the old Christmas trimmings!!!
Leah has been doing really well over the past few weeks its been a good winter with not much colds to deal with and her physical development is just phenomenal. She has become our little miss chatterbox, with some new personality traits. I have noticed that she loves being the center of attention!!!!! And she love to socialize with the older age group, now when I say older Im not talking 4 or 5 lets jump ahead to 17-21. How all of this came about is quite funny, usually Leah goes into quiet mode when we are not around familiar faces, but recently she just came out of her shell and is now the party queen.
Recently my niece Cleo celebrated her17th birthday and besides having all the family over to celebrate… it was all the young friends who joined in the celebration well. We had four age groups dominating the get-together, we had the adults , teenagers, 6 –13 years and our little toddlers which would be Leah’s category. She however decided other wise and joined the teenagers who welcomed her with open arms. She chatted, sang Beyonce’ songs… (Leah loves Beyonce) danced and shook her little behind, posed for pictures like a celebrity and dished out hugs to just about all the young guys, yes my little Leah worked the room, and now she is the cell phone screen saver of most of the party girls and boys because to them she is just the cutest, free spirited little girl they have ever come across… There is a twist to this whole story Leah in turn got all the sweets and cakes and soda she could possibly eat from her adoring fans this uncontrolled eating frenzy lead to her being on the best sugar trip ever!!! She has formed a new fan base of friends because they (the teenage party crew) have asked her to visit soon because they miss her so much.
Best of all, they got to learn so much about dwarfism and we made them understand that the “M” word was a NO-NO. I’m sure they took every word to heart and realized that even though she looks different she was just the same as every other little 2 year old, and as the day moved on I could see that her dwarfism didn’t really matter in the end they were just enjoying Leah.
The rest of the family just sat back and wondered were did our quiet little mouse go!!!! I guess she decided its time to break out!!! Well we just had a good laughed because she really was the light of the party and I hope that when she is older she won’t allow anything to get her down, she is such a happy child and she somehow manages to make everyone around her love her for who she is. I’m sure she is going to be the life and soul of many more parties to come.
So I leave you with Leahs new photo look…..
Death is never an easy topic to deal with and some tend to shy away from it completely. Danielle’s passing has had a profound effect on our family. I will always remember the first time we met her and her family, we were so excited and Leah had found her first little friend who lived not to far from home.
I have been doing some thinking over the past few days and I realize that sometimes we tend to take life for granted and we forget just how fragile we are. Sometimes we live our lives so energetically we often miss out on the little things because we are to busy to see those special moments, like the feel of the wind on your skin or the cute sound a baby makes when they stretch after a long nap. Sometimes we let our thoughts become consumed with all the things that go wrong in our lives, when in actual fact we should try to reflect on the good and simple things then only do you realize how luck you actually are.
The loss of a child has to be the most devastating situation a family has to deal with, how do you fill the emptiness? I don’t think you ever do, but I do believe in time it will fill with happy tears and soft smiles, because they somehow live on in our memories.
Heather (Danielle’s mom) said something to me the Sunday after Danielle passed away “How does someone you love so much get ripped out of your life so suddenly” I don’t think we will ever get the answer to that question, but I do know that in everything there is a greater plan, and even though we only got to enjoy Danielle for 1 year…. it was a perfect year that God had planned for her life. Leah has a little ritual that we have to go through every evening before she goes to bed, she will name every person she can think of and ask if they are sleeping… and when we get to Danielle she smiles and says “Danielle’s sleeping in heaven” and you know what my little tot!!! You are so right… that is where Danielle and all our other little friends who have passed on are…. safe in heaven and always in your heart.
It is with a broken heart I post of the unexpected passing of Danielle Bougard.
Heather, Danielle’s mother notified us on Friday evening. Danielle held a very special place in my heart and she was especially special to Leah.
I send out my deepest sympathy to Richard, Heather and the rest of the family and we pray that God will comfort you during this difficult time.
We love you always our precious little
Danielle Maisie Anne Bougard
12 of July 2008 – 17 July 2009
Danielle
Danielle's little Hand
The past couple of days have been hectic!!! There have been many questions surrounding Leah’s surgery and after some further pre-surgery assessing, the doctors have decided not to go ahead with the surgery that was booked for Friday this week.
Lets recap… during Leah’s first ENT appointment in February this year the doctor decided to remove her Tonsils and put in the ear tubes. The ENT who examined her at that specific time told us that the tonsils looked “big” so we should remove them; it was then that her surgery was scheduled for July the 17th. .Now I know it’s a long wait… but in South Africa if you are not knocking at death’s door you will wait, even if it means you have to wait 6 months… like we did. On Tuesday July 2nd we had an appointment scheduled at the ENT clinic to do all the necessary checks needed before Leah’s surgery … so what I decided to do for this post is to take you on a quick journey through the South African public health system just so that you can get a feel of what a trip to hospital is like for most South Africans who cannot afford medical insurance.
First we arrive at the Hospital at 6:00am and we hand our appointment card to the receptionist… then we take a seat and wait for Leah’s name to be called so we can collect her health record, at 7:30 am they call us we collect the record and proceed to the ENT clinic which is upstairs, there we once again place our appointment card and health record in the ENT reception box and we take a seat, judging on the amount of patients in the room before us we get number 42 stuck on the folder… so we are number 42 in the queue. I need to use the loo but unfortunately there is no running water in the toilets and they are in a state of UTTER DISGUST, so I decide to wait till we get home… so no more coffee intake for me and thank God Leah still wears diapers. At 11:30 (by this time my bladder has increase to twice its natural size) it’s our turn to see the doctor; we are informed that the rest of the staff is on Strike in an attempt for a pay increase. Some doctors in the Western Cape and other provinces have decided to “down stethoscopes” to protest their low income. The doctor then proceeds to ask me “So… Why are you here” Hmmmmmmm… “I don’t know Doc.. I just love hanging out here like the rest of the parents in the waiting area” needless to say he does not find my comment amusing. So I explain the situation and the doctor then decides to read Leah’s folder and says “Okay… you need to do a ear test “ but” that clinic just closed due to the strike, so what I will do is send you for you blood tests and then you come back to me and sign the surgery consent form” At that point my stomach turns and I feel distinctly uneasy as we are waiting for Leah’s blood test. I just could not shake the voice telling me not to sign the form just yet, Ashley just shook his head and said “ This doesn’t feel right” When we retuned to the doctor, he reschedules another appointment for Monday 6th so that Leah can get her ears tested one more time before the tubes get put in. We leave the hospital at 3:30pm. On Monday 6th I do the whole process again this time we finally get her ears tested the right ear is perfect but she has fluid and has lost some hearing in the Left ear, there is a distinct change since the last ear test in February…. I thought this would be enough motivation to have the tubes put in but the Doctor said it is not reason enough and we should come back in December for another ear test so I figure “Hell Yeah see you at Christmas we will just place a ear flap over the left ear that will probably be deaf by that time”!!!!!!!!!!!!! At this point I have had enough… and I am tired of being sent from pillar to post and I demand further test and reasoning…. And finally I get the attention of another Doctor that immediately takes over.
We spent the rest of the day in and out of tests to make sure the surgery would be in Leah’s best interest the final test was a sleep study and the results proved that it was not necessary to remove her tonsils as her breathing was fine, and the doctor seemed optimistic that she would actually improve as she grew… so it was not necessary to do the tonsil surgery but what about her ears???…. What I can’t understand is why they do not see the urgency in doing the ear tubes????? The fact that Leah’s Left ear has become WORSE and we have been through 6 EAR INFECTIONS this year alone… is that not reason enough to put the tubes in???? I’m confused…. And at the same time I am also relived that we don’t have to do the tonsillectomy.
Leah has been left utterly traumatized by all the medical examinations and blood samples, I have however decided to go for a second opinion about Leah’s ears, I do believe that this is something you just cannot leave unattended. What I have come to realize is that in the South African public health system you are nothing but a number and for this reason I urge all parents of little people ESPECIALLY IN SOUTH AFRICA to take note of the following:
- Educate yourselves on you child’s condition and the health issues linked to Achondorplasia or dwarfism in general.
- Don’t be afraid to question the doctors on their knowledge of Achondroplasia, and if they have worked with Achondroplasia patients before.
- Get the stigma of “my child is just small” out of your head because there are some big differences between a “normal” average height child’s anatomy to that of a child with dwarfism.
- Educate yourself about surgical procedure your child may have to have done so that you are fully aware of why it will benefit them in the end, this in turn allows you to be clear on all the risk factors involved when performing a surgical procedure on a patient with dwarfism.
- Educate yourself on anesthetic precautions in dwarfism.
- Last but not least listen to your instinct, we all have it …and sometimes it should not be ignored.
!!! DREW BLOOD FROM MY FINGER!!!
LITTLE ME IN THE HOSPITAL HALL WAY
HAVING A BREAK FROM ALL THE FUSSING
LETS GO HOME MUM
I thought I would do a short post just to inform everyone of Leah’s hospital check. On the whole Leah is doing great except for her Obstructive sleep apnea, things have not changed much so with the advice of the doctor we will be going ahead with the surgery which is scheduled for the 17th of July.
I am worried and I hoped that things would improve, but as much as I wanted to avoid the operation things have in fact gotten worse over the past few months so it will be out with the tonsils, adenoids and tubes in the ears.
Leah’s growth has not changed much her height is 28.82 inches (73.2cm) and head circumference is 20.87inches (53cm)
So we have one more visit for a final assessment before the operation in the first week of July, thereafter we go ahead as planned but I will keep everyone up-to-date over the next few weeks. So that was just a little update on our mid year hospital visit at the genetic clinic.
