Browsing the archives for the support tag
We would like to thank Clare Szuminski who ran to to raise money for us in the Manchester 10k on the 16th May. If that was not amazing enough she also ran the the Edinburgh Marathon on the 23rd May. Wow and double wow that was a lot of running
If anybody else would like to run for us to help us raise some funds to profice family support, as well as help to cover conference costs , hear is some great music from 1966.
Ok… so good intentions aside… I really struggle to find time to sit down and write stuff here… and when I do finally get all the girls into bed and medications and feeds done and everything under control, I have hundreds of ideas of things that I want to write, but I struggle to find the words to write everything down.
Tonight I need to write something because I have so many thoughts rushing through my head that they’re starting to jumble and crash… so it’s time to put some out in the open.
So… anyway… here goes.
On Friday night Nicola got rushed into emergency theatre to have a shunt revision done. Nicola has a Programmable VP shunt inside her head. In laymans terms there is a catheter that goes into her brain and drains spinal fluid into a reservoir. The reservoir then drains fluid down through a valve into the cavity around her gut which is then reabsorbed by her body. The idea is that it is supposed to remove the excess fluid from around her brain and relieve the pressure around her brain.
So anyway, Thursday night we noticed that the site around her shunt on the back of her head was looking a bit squidgy… Friday morning we phoned the neurosurgeons to ask for advice… Friday afternoon she had a shunt series done to check the status of it and Friday night she was in theatre.
It was a bit overwhelming… but then again I am starting to get a bit used to this. My husband found it funny… every time anyone asked him about our plans for the weekend he responded with some quip about just popping up to the hospital for a spot of last minute neurosurgery… like it’s no big deal or anything… you know, we may as well have just popped down to the local shops for how blase he was being about it all.
But this is our life, and we are adapting quickly. We are resilient, we have to be for our other children.
Anyway… this is where the real point of my post tonight starts.
Saturday night I get around to checking my email and find an email from one of the other Costello Syndrome Support Group Mothers, letting people know that her son had passed away.
He was 27 years old. He wasn’t unwell, he wasn’t in hospital, he hadn’t had surgery… he just passed away. They think it was his heart.
It was a simple email, just one line… but it shattered my heart.
This hasn’t been a good year for the Costello community. Willa has terminal cancer… she’s only 2. Joanne passed away from complications from routine surgery… she was one of my dearest friends and she left behind two beautiful little children (one with very special needs) and a loving husband. Now with the death of Bret…
I feel like every other email that comes over the support group list leaves me in tears… the sad thing is, that no one in my real life understands why or how I can get upset over people who are virtually strangers.
To me, these people aren’t strangers. Some of these people I have never met, some of these people I have met once… but still they are part of my inner circle… my nearest and dearest.
No matter where I look in my real life, there is no one that understands what we are going through on a daily basis. They don’t understand the constant fear, the constant admsisions, the health problems, the medical complications… they don’t understand the pain and the torment that becomes part of our daily lives…
We recently attended a support group meeting that was organised by one of the local disability services groups for families dealing with rare conditions. There were 4 families there… and out of all of them, no one understood what kind of life we were living. They haven’t had the ongoing admissions or medical complications that seem to plague our every day lives.
And then there is my Costello Family.
While they don’t necessarily deal with every single thing that we deal with, as a general rule, they understand. They get the babies that cry almost constantly for no reason… they get the feeding problems and the failure to thrive and the metabolic and endocrin problems and the gastro problems and the heart problems, the fear of cancer, and the combination of all of the above…
And they understand the isolation of dealing with a condition that no one else has heard of or understands.
We went to a cardio review last week and there was a new receptionist. While we were waiting to be checked in I glanced over the pamphlets sitting there and saw one for autism and one for downs syndrome, both talking about support groups and what help is available.
No one has heard of Costello Syndrome.
But my Costello Family understands, because they are living the same life that we are living. They are my light, they are my rock… they are my foundations. Without their support, I really don’t know how I could get through every week.
That’s why I get so upset when bad things happen to my other family. That’s why I cry at the heartache of someone who is a virtual stranger… because even though they are virtual strangers, they are my family, and I love them all deeply… even the ones that I disagree with!
But beyond that, there is also the fact that it makes me question a lot of things that I try and push to the back of my mind… like the fact that there but for the grace of God go I.
And it sounds sooooo shallow and self absorbed to say that, especially in light of everything that has happened… but regardless, I feel it.
It could just as easily be my daughter, my family… and that thought tears me apart. I hate even thinking about it, but I can’t help but think about it when the reminders are constantly there. One bad news email after another, one complication after another… every day there are reminders that our lives are just totally not ‘normal’ and that’s ok… but every three months comes the slap in the face that reminds us just how bad it could be.
But at the end of the day, when I still have my daughter here, no matter how bad a day I might be having, what right do I have to complain when there are clearly others who are so much worse than I?
At least tonight I can still go and kiss my children goodnight…
Bein
g a small support network it can be hard work to raise the funds needed to carry on with the work we do. so why not help and support us by shopping till you drop.
We’re delighted to announce our fundraising webshop. When shopping online, you can access over 100 leading retailers using our webshop. Every time you use our webshop when shopping online, you’ll automatically earn money for us! You don’t pay anything extra by using our webshop, so please try to use it whenever you can.
Find our webshop at buy.at/CostelloKids (please bookmark this link for future use).
Written by Jodi, from Australia
T’Was a Tuesday When The World Ended…
Have you ever experienced that one moment where the whole world just stops? If you have, you know what I’m talking about… the moment where everything in the background kind of blurs away. You feel like your heart has stopped beating, but you know it is because it’s beating so loudly it’s drowning out the rest of the noise in the vicinity. You can feel sweat pricking on your body, but your insides have just turned cold. You have no strength, no will, no desire, no ability to focus, think or comprehend more than just one or two words…
For me, those words were ‘Costello Syndrome’.
This is the name of the great big evil horrible thing that is affecting me beautiful precious baby girl.
It still seems so hard to comprehend. I fell like I’m in an emotional train wreck.
Really, how does a person come to terms with the fact that their child, their precious, sweet, innocent baby, has this horrible syndrome, that is not only life threatening, it is also incredibly rare, so no one really knows anything about it!
When you have a child, your heart gets filled with all these hopes and dreams… you hope that your child grows up and does well in life… that they get a good education and a good job and meet a good person and have a good relationship and God willing, they start the cycle again so they get blessed with their own precious children, and they get to experience all the joy that they have brought to your life.
With those few little worlds, it felt like all my dreams for Nicola had been snatched away. Instead of dreaming that my child grows up to have a happy and prosperous life, I found myself dreaming that she will just grow up… that she will be one of the lucky ones who doesn’t have to deal with the neuroblastoma or rhabdomyosarcoma or any of the other cancers that plague these poor children in childhood and adolescence, that she won’t live a life of pain and suffering, that she won’t suffer in some horrible way.
All of a sudden, I’m playing a new and different game… the problem is, no one has told me the rules.
Most days I truly feel like Alice after she went through the looking glass. I look back on the life that I used to have, and I can’t help but think about how much easier that life was… how much less stressful…
But then I look at Nicola, and she gives me that beautiful little smile of hers… and I know in my heart that I wouldn’t change anything. She is here, she is ours and we will do everything that is humanly possible and then some to give her the best possible life we can… the life that she deserves to be living!
After all, the rules don’t matter. Rules are made to be broken.
___________________________
That was the (slightly modified) entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.
My wounds were raw… something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.
I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.
I can’t recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong…
Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?
Did I not take the prenatal vitamins early enough? Did I miss something else?
What did I do that could do this to my precious child?
I still lapse into those thoughts from time to time… I find myself wondering…
But oddly enough, now, only 6 weeks later, I can’t imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don’t mean just the medical skills.
Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.
Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible… and she has taught me how to fight, not just for her, but for everyone else that is just like her… and already we have achieved miraculous things that we never thought would be possible.
Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings… a story that reduced me to tears and kept me there for the rest of the day.
It was with that story that I realised that the confrontation for this condition hasn’t ended.
There are so many beginnings and so many endings… there are so many chapters in this story…
Some days I dare not turn the page for fear of what the new chapter may bring.
The reason I’m sharing all of this now is because today has been one of ‘those’ days…
One of those days where everything is just all too hard. I don’t want to deal with the truth, I don’t want to deal with the doctors, I don’t want to deal with the medical stuff… I just want one moment of normalcy in my life…
Tonight when I was doing Nicola’s speech therapy and giving her a bottle I discovered that she has cut her first tooth.
And that was it…
In the midst of all of the frustration and the confrontation…
As if she knew that tonight I needed it the most… my beautiful little girl had given me the one moment of normalcy I wanted.
Now, my wounds are still raw… I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)…
My heart will still break when she cries in pain… and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes…
I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better… I will still fight for her, and for every other person out there like her…
But now I can look forward to being surprised by silly little normal things as well.
Kindest Regards,
Jodi
Attending a conference can be expensive!
Click the link below and see if your state’s Council on Developmental Disabilities offers any assistance to families to attend our conferences.
Some states like Alabama do! Every state is different and some may not even offer this type of assistance.
It is easy to apply. There are no financial criteria… you just have to be a person with a developmental disability or have a child who has a developmental disability!
So go on, if you are thinking of attending the conference, apply now, and you may just get the financial support you need.
The support group is a great way for families to get assistance with problems that they are having with their Costello people and the families of younger people seem to find it marvellous in that respect.
Like anything, there are two sides. I strongly feel that we also need to learn the good things that occur. I have been told that some people feel uncomfortable about passing on the good things as they can feel bad because their child is doing so much better than some others.
One Mum asked me when she could expect her child to get the problems that she reads about. I told her that her child probably won’t be affected in those ways as the child hasn’t had certain problems. Personally I would have loved to have had positive feedback when my daughter was small. Apart from when she was nasal tubed and now sometimes after a cold she has not had the mucus or vomiting problems that some younger children with Costello Syndrome have.
But like everyone else we had our setbacks, dramas etc. It is just that they can be different. Of course as parents we are at different stages of knowledge, acceptance etc and I no longer want to feel uncomfortable relating achievement.
Anything I write when using our listserv is my personal experience, impressions etc. I am passing that on to hopefully encourage others and share my celebratory feelings and or give you a giggle at my expense. When my daughter turned four, she weighed 9.8kg and was 81cm tall, had 2 words. She ate all puréed food, and presented us with a soaking dirty nappy EVERY morning, I would have loved to know that there was a good possibility that she would get beyond all that. She did, look at her now.
Our immediate family is small. I have one sister, my husband has one brother. Both are married with families. My girls only ever had one grandparent, my father, who until he died at the end of 2006 had not come to terms on how to treat my daughter. I was lucky. For 33 years I had a supportive hands on husband. Like a lot of men he shed most tears privately. I didn’t, I wet his shoulder and stormed on about the desperations many a time.
I recently sent an email to the support group, answering a query about what Costello people achieve. I did say at the beginning I personally didn’t like the word retarded or some such. Unfortunately that was the only sentence in the whole email that got any attention. The positives may have been picked up but no one else shared their positives. I don’t use retarded, handicapped, special, as I don’t think they apply BUT I accept that other people, cultures etc do use these things. I don’t like the title Costellokids either and I told Colin our web master that, and why. He accepts my thoughts and I accept that is what the group is called. Neither of us is right or wrong, we just have a different opinion.
It doesn’t stop me referring people to the site. I just tell them to Google Costello Syndrome. We are all entitled to express our thoughts and I do hope that if I have offended anyone with mine, they will contact me privately and not through the list. NEVER would I willingly or deliberately offend any person or family but with so many cultures, beliefs, countries represented, some one is bound to feel slighted at some time. Please know that this slight, if any, is done unknowingly and let me know how I have offended so I can remedy your personal concern to the best of my ability.
My big wish with our support group is that parents of older people could feel they could share more. Health issues, activities in and out of school , after school. A few people do and that is great, but there are many more families out there who are a font of information to those coming along.
I asked recently did any families have orthopedic problems presenting. Apparently there is no deteriation in anyone and they are all moving well as I got no replies. That is really good. My daughter and I along with the Drs will just have to work out what could be happening at this stage in her life.
Margaret and I live in the same country and we communicate. Those extended two hour phone calls are a life saver often. Like the younger families some of we oldies, really appreciate having the list serve available to share/vent the celebrations/dramas with like minded people who have been or have been experiencing these same things.
When my daughter was small on many nights I set the alarm to wake me, so I could wake my daughter in order to spend the next 90 minutes bottle feeding her, I would come back to bed to wake my husband to tell him, through many tears “She can’t do anything, she can’t even cry properly”. There was no listserv, no support group, in fact no information I could use to help me understand. People just said, let her sleep, she will wake up if she is hungry. We proved that wasn’t the case and it was a very lonely time. We thought we were the only family in the world experiencing these things.
To those that read this, Thank you
Leonie Bence (Australia)
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