Rough but would not be without…

I am stronger than I give myself credit for
And yet, I am weaker than people think
Weak might not be the right word
But I do cry many tears

Some tears out of joy
Some tears out of pain
Some tears out of laughs
But every tear is important

I wish I travelled the world
I wish I already finished school
I wish I had a garden
I wish I had more adventures

Travelled the world to tell you the cultural stories
An education so we had more money
A garden you could play in
Adventures just for all the laughs

But then I think about it all over again
And realize that I do not need those things
Because I have YOU
And you; are my world, my education, my garden full of adventures

Sometimes I feel alone
Sometimes I miss your spoken words
I wish you could say ‘mommy’ again
I wish I could make everything okay

But then I think about it all over again
And realize you are speaking to me every day
You do call me mommy when you look deep into my eyes
What is in the word ‘okay’?

People tell me all the time ‘how do you deal?’
People tell me my life is rough
People tell me how proud they are
People smile and some do not

I deal because I have to deal
Rough life? Yes, sometimes
But it is the roughness that makes me proud
You smiling is the only thing that matters

Visits to the hospitals are no fun
Spending hours on the internet
Searching for clues or answers
Gives me a lot of worries and sleepless nights

But every day is our adventure
The good and the bad
The dark times are brightening up
Because you are fighting every day

This might be a silly poem
But I mean every word
Tobias, my son; you are just perfect
The way YOU are.

foto 5

Posted in Personal Blog | Leave a comment

My son’s new medication and I’m now studying…

10702110_10203479018950998_5339666947341042082_n

It’s been quite a long time since I wrote a blog post, so now you’re getting a little update on what’s going on in my life.

Most of you, following this space, know that my son is suffering from an unknown illness and no, I still have no clue on what’s wrong with him. Tobias and I went to a hospital where we talked to doctors about a full genetic test – a test Tobias isn’t getting but the doctor promised me, she would try to think about other genetic tests. I still haven’t heard back from her. I guess my son is just one big mystery to all doctors.

Some time ago, Tobias started having these smaller seizures. We were admitted to the hospital for observation but unfortunately, the doctors couldn’t tell if my son was now suffering from epilepsy and therefore we’re now waiting on being admitted to another hospital…. It’s been almost 6 months, and I still haven’t received the actual appointment.

My son’s seizures became worse and longer… even in school they got worried about this. As if my son hasn’t been through enough already. The seizures were now so intense that whenever they hit my son, he would drop to the floor without warning. Therefore, he was sitting down a lot to prevent him in getting hurt. This wasn’t rally satisfying because my son needs to walk around in order to develop his motor skills.
This week (Tuesday) a teacher called me to let me know that they had called an ambulance to come get my son because he had a very bad seizure, almost 4 minutes long, and it was difficult for the teachers to get my son to react to anything. I was scared out of my mind. My mom picked me up immediately and we drove to the hospital. Thankfully, one of Tobias’ teachers was at the hospital, she was in the ambulance with Tobias, and she stayed with us while we were at the hospital – such a sweet lady! The doctors didn’t do much but at least, they checked that my son was okay.
This experience made me really frustrated, sad and angry because I had nothing on my hands to help Tobias through these seizures.
The day after he had been on the ambulance, his doctor called me and said that Tobias really needed to try some epilepsy medicine because it was getting too dangerous with his seizures and the way he just drops to the floor. I couldn’t agree more and since we still haven’t heard from the other hospital, I didn’t have any other choice. So I picked up the medicine and then went through the day, crying and crying, because I was kind of torn between giving these pills to my boy or not. My logic sense knew that I couldn’t do anything else, but my heart wasn’t agreeing since this kind of medication isn’t without risks at all, but I gave Tobias a pill at night before bedtime. Today, he haven’t had any seizures at all… yay!!! Still not happy about the toxic pills but but but, it’s the only solution for now.

This week, I also took Tobias to this clinic that has a very good reputation in helping people who suffers from all kinds of diseases. I’m not going into details about this since I don’t know much yet… all I know is that it was a great meeting and the doctor was very kind and helpful. He explained many great things about how our brain works, our central nervous system etc. It was good to hear his thoughts on my son. I was very skeptical since I’ve tried so many alternative treatments for my son, and all of this is very expensive and nothing has helped so far. But this doctor was kind enough to give (for free) this energy power bracelet to my son. A bracelet that’s made out of silicone where there are placed as many negative charged ions as possible. These can be discharged and penetrates through your skin. It’s well-known that negative ions can enhance your cell membranes, which will give you a stronger immune system than without the bracelet. I don’t know if this is true, but I’m willing to give it a chance.

foto (9)

On October 2nd, Tobias is getting his first craniosacral therapy session at this clinic and I can’t wait.

This month, Tobias and I were in our local newspaper and it was a great article about my son, his story and his unknown illness, how I cope as a single mom with all the fights against the system, all the hospital visits etc. Many of our neighbors have stopped me and told me how amazing the article was and how in awe they are. All I can say is this; it’s my son, my responsibility and I love every day I get with my little man.

10387391_10203380612490898_5378787073391820623_n

But some very good news about… ME:
September 1st, I started as a student at the university (in a city close to where I live – I have to take the train to get there).
I’m studying a BA in library science and knowledge communication… it’s still very new but I love it. I’m in a great class and the teachers are amazing! It’s a little more difficult to get everyday life to function completely but luckily, I have my mom and she helps me when I have late days at the university and therefore can’t make it home in order to get my son from school. Thanks mom, for all your help and support! I love you!
It feels amazing to be a student, because it gives me something else and I feel like I matter in another way. It’s not to sound negative or anything, but the feeling of talking with other adults about stuff that has nothing to do with my son, is so fulfilling and it gives my life a whole other perspective that I really needed.

It’s now been more than two months since Tobias saw his dad, and not once has my ex mentioned, he misses his son and that he’s sorry for not being there… I’m so disappointed and kind of hurt. I’m not even sure why I’m hurt because it’s not like he’s ever fully been there for Tobias ever since he became sick.

But I will write this; Tobias hasn’t been happier than he is right now. He’s full of smiles, laughter and you know what? He loves to run away as soon as he gets the chance. Is it nerve wrecking when you know your son isn’t the best at walking? Sure is! But I do need to let him run free at times, he needs to see the world without me holding his hand all the time. It’s difficult but my goodness, he’s developed so much the last couple of months. It makes me happier than words can ever describe.
Tobias, my little champ, you’re the best and you keep surprising everyone in your life!

10665700_10203479014590889_4413093084000001336_n

So this was a little update on how things are going in our little household…

Posted in Personal Blog | Leave a comment

Give-away… Spillet om Sirenen-konkurrence…

Andrup's bookshelf

Om kun 2 dage udkommer Spillet om Sirenen, og du kan her på bloggen vinde et eksemplar. Det eneste du skal gøre for at deltage i konkurrencen er at Like og dele opslaget på facebook, eller Like og kommentere dette indlæg, og så er du med i konkurrence.

Vær med til at sprede budskabet om en fantastisk debutbog af Pernille Vørs.

Læs min anmeldelse af bogen her og læs et interview med Pernille her.

Vinderne af konkurrence udtrækkes på fredag, hvor bogen udkommer 🙂

Spillet om sirenen collage

View original post

Posted in Personal Blog | Leave a comment

I feel nothing but….

Truth is; I’ve been upset many times in my life but nothing has ever come close to how I’ve been feeling the last couple of days (well, actually it’s been like this for years when it comes to a certain ‘man’) but now it’s reached the point, where I get physically sick from feeling this mad, disappointed, sad and furious.

How come the ‘man’ who helped me create the most precious gift in this world, is the same ‘man’ who’s making my life a living nightmare sometimes!

Yes, he criticize me all he can and apparently he loves it… it’s taken me a long time to ignore it but when it comes to my son; no one should criticize him – especially not his illness and by his own dad?!

I’ve come to realize that it’s because this ‘man’ is simply not a man!

It’s not like my son sees his ‘dad’ that often (every other Sunday some hours and that’s it) and yet, his ‘dad’ seems to know everything… Let me just tell you something (dear ex):

Are you the one not getting sleep because our son has seizures at night? Seizures, I can’t do anything about before the doctors figure our why he’s having them.

Are you the one who’s been taking him to several different hospitals?

Are you the one who takes our son to school every day and pick him up?

Are you the one who’s been home training him for over a year?

Are you the one who tries to contact every doctor you possibly can?

Are you the one who’s searched the internet day and night for years to figure out what’s wrong with our son?

Are you the one who’s entire life has gone on pause just to be there for our son?

Are you the one changing his diapers every day?

Are you the one who’s giving him a shower so he’s nice and clean?

Are you the one who’s feeding him and giving him something to drink every day?

Are you the one who’s holding him in your arms, when he can’t find rest and all he can do, is to scream because he has no language?

Are you the one who’s tucking him to bed every night; giving him a kiss on his forehead, letting him know how amazing he is?

Are you the one who knows him the best?

NO!

But you know what; it’s cool, it’s alright because that also means that you’re NOT the one who ever receives the most beautiful smile every day.

You’re the one who’s NOT hearing the warm laughter.

You’r the one who’s NOT looking deeply into our son’s gorgeous blue eyes just to see how he feels.

You’re not the one meeting sweet neighbors, who’s telling our son how strong he is.

You are the one, missing out!

But don’t you ever be the one to tell me that our son should be on a residential institution! I can take care of our son, as I’ve done many years! I won’t give up, not even when you tell me that he’s never going to be well again… if not, so what? I love him with all that I am! But it’s my job to make sure that my boy knows how good he is, it’s my job to believe in him! It should have been your job as well, but you know what? Luckily I’m blessed with a family who doesn’t create distance when someone is sick!

I loved our son when he was just perfect like any other child, I still loved him when he became sick! I will ALWAYS love him just as he is! Why? Because he is MY son!

I don’t care that you don’t want to see your son anymore – in some way, that’s for the best because you have absolutely nothing to offer him anyways! But, it does hurt my mommyheart that you can just say goodbye to your firstborn – that you’re not even willing to fight for him, to fight with him! I hope you cry every day! I hope you know that you’ve made a big mistake… I feel nothing but sorry for you!

Sorry, I just had to vent!

foto 3 (1)

10385417_10202678580340533_8290204089458387641_n

578346_3437571532911_624286451_n

1011559_10201794955370461_136394123_n

foto 5

Posted in Personal Blog | Leave a comment

Who’s the lucky one?

Right, most of you reading this blog, know that I have a beautiful son, who suffers from an unknown illness.

Some time ago, I received a letter from a hospital, letting me know that Tobias’ doctor referred him to have a full gene analysis. It also said that I have to think really hard about it, before letting him have that blood test, since a full gene analysis reveal a lot – even things that has nothing to do with my son’s unknown illness. I did think about it, a lot, but when it all came down to it, I decided that this test was the best thing to do at the moment, but then I was told that they couldn’t guarantee that Tobias would have this test any time soon because it’s not something Denmark uses that often.

Then yesterday, I received another letter from the very same hospital, letting me know that I could come and talk to the doctor working in the genetics department… so I called the hospital today to hear if that means that my son will have that blood test?

No!

Yeah, you can imagine my surprise (correction: my FRUSTRATION) – The doctor told me that she’ll call me back this Wednesday so we can talk about it all but she did tell me that she couldn’t tell if Tobias will have the opportunity to go through the full genetic test. Right now, they’re taking these tests on people wanting to have children (if there are some illnesses etc. in their families) and it really had to be urgent. So, a boy who’s been sick for 6 years, no diagnosis, just recently started to have unexplainable seizures, who could suffer from a very rare metabolic disorder isn’t urgent?!

Why is it that just because I’m a single mom, my boy is getting punished? Yeah, sorry – you might think that I’m being pathetic right now but seriously, a doctor wouldn’t refer my boy to this if she didn’t believe it was urgent and come on, the doctors are without any clues on what to do next.

I asked this doctor why my son couldn’t have it and how long into the future are we looking? Well, since I’m not trying to have another baby at the moment, he’ll be on a waiting list and timeline: 1-2 years from now?!

I’m so angry because why would someone even mention this kind of test to me if it’s not something we can have? I don’t even know if my son is alive in two years! It makes me sad and frustrated.

BUT, hopefully I can explain to this doctor how important this is! I am sorry if I sound selfish and yes, I know other people are suffering to and it breaks my heart BUT when it all comes down to it, I have to think about my son and how to help him the best! He’s my everything and I truly hope he’ll get this test. I don’t know if it will even reveal what’s wrong with him but what if it does?

The reason why the genetic department only pick a few families for this, is because tests are not analyzed in Denmark but abroad. Well, then dear Denmark; WAKE UP! Let this kind of tests be an opportunity for all people who are somehow suffering from rare, unknown illnesses. Don’t say no to a 7 year old boy just because his mom isn’t in a relationship where there are thoughts about having more children!

Posted in Personal Blog | Tagged | Leave a comment

Motherhood…

So, I was watching the movie ‘Motherhood’ starring Uma Thurman (I just put it on pause to write this blog post) because Uma is playing a mom in this movie and she wants to enter a competition, where she has to write about Motherhood… it made me think: What’s Motherhood to me? 

Well, before I had my child, I thought about being a mom, what kind of mom would I be, what would I make sure to teach my child… but most importantly; how would my child be? Would she/he be healthy and well? Then I was told that I was expecting a boy… ‘as long as he’s healthy, I’ll be a happy mom’ I told myself and he sure was healthy. A big baby boy (4740 grams and 57 cm’s long) and he was healthy; two hands with five fingers on each, two feet with five toes on each, two eyes, a cute little nose and a beautiful little mouth.

 

Image     Image

 

I stared at him all day and night, never left his side and he grew… He started looking at me with his blue eyes, smiled and laughed.

Image

Image

 

Every thing was going as it should, according to the big book about babies and children…. right until the day where things weren’t going so great; the daddy and I were not together anymore, I had to move into a new apartment with my son, we didn’t have a lot of money or furniture for that matter. But our new life was still full of love, joy and smiles… right until the day where my son stopped developing. Motherhood changed and days became filled with worries, frustrations, hospital visits etc…


ImageImage   ImageImage
Image   

But this blog post is NOT about my son’s unknown illness but about Motherhood, the finest job on this planet if you ask me!

 

YES, it’s tough.

YES, you don’t sleep as much a you should or want to.

YES, you don’t put yourself first at any point.

YES, it’s expensive.

YES, you can’t go out whenever you want to.

YES, there are days where you can’t shower.

YES, you’ll look like a freaking zombie sometimes.

YES, there’s a risk that you’ll even become a SINGLE mom, like me! But fear not! The price for being a mom (single or not) is priceless, it’s the greatest gift you’ll ever get, no matter how tough it feels at times!

Being a single mom to a boy who’s suffering from an unknown illness, Motherhood might be a little different for me than for you.

Being a single mother means that I’m not missing out on anything!

I’m always here for my son. I’ll watch his every move, every smile, every laughter, and even every tantrum, tears and frustrations. 

I can still stare at him while he’s sleeping in my bed.

Image

Every day, I get to shower my boy, dress him, feed him, make sure that he’s happy, but most importantly; I get to fight for and along with him each and every day! I get to show every doctor that he’s still standing, and he’s even smiling more than ever! Sure, his unknown illness makes me cry, makes me shout, makes me feel so utterly helpless but when it all comes down to it; I’m only reacting this way because I’m loving someone unconditionally… I’m blessed with the greatest love of them all… my son.

Image

Motherhood is all about the unknown path! A path that will make you go through every emotion that’s possible for us, humans. 

In the end, it’s all worth it! 

Motherhood to me is the ability to keep developing myself, keep learning new things, searching the internet to see if I can find the right help for my boy, learning to cook new diets etc, keep finding my inner lion and keep fighting for my son and what he needs, crying loads of tears; both happy and sad ones. Motherhood is all about loving my son, I loved him endlessly when he was well and now he’s sick, I love him even more… why? Because in spite of all the troubles we’ve been through, the fights we’ve battled (some lost, some won), all the days, hours and minutes at different hospitals, all the tears I’ve cried because of the worries, forgetting my own dreams and desires just to be the best mom to Tobias, that I possibly can be…. In spite of all that, I know and keep telling myself how blessed I am! I’m the mother of a very unique boy who keeps surprising, who keeps smiling even though he’s not like other children, the boy whose eyes guides me, shows me the path we need to walk…

So yes, some days my eyes are swollen, my nose is red, my hair’s a mess and my shirt has stains on it but Motherhood is something I wouldn’t be without. 

Image

Thanks to my son, I’m experiencing Motherhood on my own.

Image

 

Image

 

 

Posted in Personal Blog | Tagged | Leave a comment

The face of love!

The face of love!

Looking at this photo I took of my beautiful son yesterday, makes me incredible thankful!
Thankful that he’s looking at me, he’s holding eye contact – something that he’s not been able to do for some years and now he can again!

Image | Posted on by | Tagged | 2 Comments

The little Hero

The little Hero

Tobias, my little Hero…

I could read a million books
And yet, you’d always be the one
Who taught me to be
wiser, better and stronger

I could learn all the martial arts in the world
and yet, you’d always be the one
who taught me how to fight the right way
along with faith and strength as my weapons

I could look for love in every poem
And yet, you’d always be the one
Who taught me that love is endless
Being your mom is the definition of love

Tobias, my little Hero
Thank you from the bottom of my heart
for choosing me to be your mom
You’re my real life inspiration

Image | Posted on by | Tagged | Leave a comment

Update on Tobias…

ImageMy beautiful son, Tobias – he’s now 7 years old.

 

Some time ago, I wrote the most important blog post, I’ve ever written because it was my roar for help to my son, who suffers from a unknown illness.

Click this link to read that blog post: http://www.majasf.wordpress.com/2013/04/03/my-roar-for-help-to-my-son/

Many people retweeted that blog post on Twitter, shared it on Facebook and their blogs etc. Thanks to all of you, who tried to help me!

Unfortunately, it never gave me the help I need… Several people offered some of their thoughts, some gave me names of doctors and hospitals, and some mentioned different alternative treatments. It’s all very appreciated and I can’t thank you enough. But when it comes to hospitals abroad (I live in Denmark) I can’t contact the doctors as a private person because it has to be my son’s doctor who contacts other professionals and hospitals – so far, they won’t do that and somehow I understand when they give me their reason why they don’t contact anyone abroad. They’ve told me that they need to have something constructive to tell other doctors and since they have no clue on what my son’s illness is, they have a hard time finding the right help abroad. I don’t want to repeat all the things I wrote in the first blog post, so please read it as well if you haven’t already.

An update on Tobias is needed and maybe, someone can recognize the symptoms or someone knows a specialist who wants to help.

Tobias hadn’t been through any tests or examinations for a long time. It seemed like the doctors had given up. But then unfortunately, Tobias started having these seizures. First I didn’t think a lot about it because he has, for the longest time, had stereotype movements with his body and the seizures didn’t come often but then they came more rapidly.

 

Pictures from the last EEG scan. It’s my sister on the pictures as well. This is the first time, Tobias actually went through this examination without screaming all through it. He was such a champ!

Image

Today he has several seizures during day and night. Hopefully, I’m able to explain his seizures to you in words: He looks angry. His mouth in an open straight line. His eyes are huge and staring (not rolling) and then his entire body cramps. He puts his arms above his head (usually he’s clenching both hands together) and his legs/feet are kicking up and down if he’s lying down and if he’s standing up, he’s stomping around. Due to these seizures, he went through his third EEG scan but again, the result was normal. So Tobias and I went to the hospital this Tuesday and we came home yesterday.

Image

He was in for observation and the doctor plus a nurse saw his seizures but they didn’t think it was epilepsy but maybe another symptom of the unknown disease he’s suffering from. Again, doctors have no idea what it could be, so I have no clue on what to do and I hate to send him to school when he’s having these seizures. So far; the doctors are thinking that Tobias is suffering from a rare metabolic disease but how to test for it they don’t know. I know they’ve tried contacting one or two doctors abroad but they couldn’t help in any way.

 A little about Tobias today:

His skin as acting totally out – he’s always suffered from extreme dry skin but now it’s starting to look as if he’s changing his entire skin; it’s flaking like dandruff and the skin underneath is flawless so it’s not like he’s drying out or anything. This picture I took today; the condition of his skin isn’t as bad as it has been and the flakes of skin has been on his entire stomach, neck and back. Also his scalp is filled with what looks kinda like cradle cap (best way to describe it) – again, I’ve tried several treatments for his dried out scalp and nothing works.

Image

He’s having seizures every day and night, some last between 5-7 seconds and some between 10-15 seconds. He’s still walking on his toes, he has stereotype movements with his hands, often he’s rocking his head from side to side when lying or sitting down. When he’s standing up, he’s always in constant movement from side to side. His spoken words haven’t returned yet BUT he has started making other sounds, and sometimes it seems as if he’s trying to speak. He’s a very happy boy and there’s almost always a smile on his lips. His curiosity has returned; he’s finally attentive/aware when other people comes into the room. He’s become a lot better in letting me know what he wants (if he’s thirsty or hungry). He’s starting to put on some weight, but he’s still bloating up his tummy a lot, burbs a lot, farts a lot, shifts between having diarrhea and being constipated (seriously, he can go from having ‘diarrhea like stool’ to being constipated in the evening.)

Image

 

A picture to show you his feet and when he’s on his tiptoes (which he is almost all day!)

 

I’ve tried many different diets, some worked on his skin, some on his stomach problems but one thing that happened on the diets; he lost too much weight. So now, I’m just trying to get him to eat as varied as possible.

 Seriously, I’m very desperate when it comes to my son because if it’s true that he’s suffering from some kind of a metabolic disease, then time is against us. It has to be discovered what’s wrong so he can get the right help and treatment. I’m tired of fumbling around, tired of looking on the internet to see if I can figure something out. All that does to me, is making me more worried and filled with anxiety.

My son has been tested for A LOT of illnesses, some rare some not so rare and still, nothing that indicates what’s wrong with Tobias. Every time the doctors have prepared me for bad news on a test the test came back normal. It’s all a mystery right now but please, share this with as many people as you can. I’ll be forever thankful!

 

Thank you for reading…. love from Maja 

 

Some pictures from our last visit to the hospital.

Image

Image

Posted in Personal Blog | Tagged | 1 Comment

Konkurrencetid…

Vind min debut bog ‘DrømmeSyn’ 🙂

Andrup's bookshelf

Påsken er over os. Det vrimler med gækkebreve og påskeæg, og Påskeharen er på overtid. Her er mit påskeæg til jer i samarbejde med forfatter Maja Flak.

Vind bogen “Drømmesyn” af Maja Flak

Danske Maja Flak har udgivet hendes erotiske debutroman “Drømmesyn”, og nu har du muligheden for at vinde den. Svar på nedenstående spørgsmål i kommentarfeltet.

Torsdag den 24. april finder jeg 2 heldige vinder af bogen.

Hvad hedder Maja Flak’s “Drømmesyn” på engelsk? Skriv dit svar i kommentarfeltet her på bloggen eller på facebook, og så du er med i konkurrencen.

Læs mere om Maja Flak på hendes hjemmeside.

Drømmesyn

View original post

Posted in Personal Blog | Leave a comment