Nativity

Today is Mikeys nativity. Probably his last one at the school he is at now. Very excited for him. THe best part of it is when he is up at the front with his friends and teachers and you see the moment when he spots myself or someone he knows watching and gets very excited (and then spends the rest of the performance pulling tongues across the hall :-)) He is very good at that... i once took him to university with me initially to see the tutor before the lecture started but we were allowed to stay and boy did he have fun being centre of attention, not sure we all concentrated that well on what we were supposed to be doing but university at six years old...tell that to his doctors who said he wouldnt do this that and the other :-)

Mummys can't be poorly!

The title says it all really. I am struggling with a virusy cold and have had this for nearly a week. Feel guilty for moaning about feeling yuk and it humbles me to think that Mikey must feel yuk alot of the time yet he keeps smiling best he can.. so why don't I? I go to sleep each night thinking tomorrow I should feel better but morning comes and the aches and constant headache is still there. Weekend was a real struggle. Too proud to ask for help from anyone, and would there be any point? I wrote on my face book status about being yukky. People who could have helped sent me get well wishes, nothing more, probably too scared to offer to help with Mikey incase I actually took them up on it and would have ruined their weekend plans. On the phone to my brother yesterday I told him I was poorly. He gave me sympathy but it wasn't until i said I had been fainting he said he would have come over after work... so to be poorly you have to pass out because then you are really poorly. Lol. I tell a little white lie there as another mum of a child offered to have Mikey on the second day yet she has a child of her own with high care needs, but she does understand the struggle of being ill and being a carer. Yep, this is a self pitying post, but as i said when i started out, i will be honest in my posts with my feelings at the time of posting. Hey ho.. off in search of lemsip now....

A brief history...

And so to a second post. I feel i should provide a brief history, and brief it will be. To write it all would mean you were still sat here reading at new year 2020 The picture you hopefully see above this was Mikey at three days old and a more recent one... this display in its own right shows just how far my boy has come.
At 33 weeks I went into labour but they stopped it. Had high blood pressure and was keeping a kick chart...three weeks later I noted there was little movement. I was admitted and baby was monitored. He had low ctgs and v poor foetal movement...24 hours later I finally was examined (another story!) and was rushed upstairs to be induced. waters popped (my eyes nearly did too when I saw the knitting needle implement they were going to pop my waters with!) But labour didn't happen. Another examination concluded baby was in distress and had emergency c section. Mikey was born at 7:15pm on 20th July 2000. It’s strange the things you remember...I remember thinking it’s the break in emmerdale. He was rushed to the resus..only needed facial oxygen to get him going for five minutes and I heard him...not a cry, just a noise but it was all a relief. As the surgeons patched me up...I remember an intense urge and need to see him and hold him. He was placed near me so I could see him and his father got to hold him. We were then taken to the recovery bit. I sooo wanted to hold him but he was taken to SCBU...then told it was because he was a bit cold..nothing serious. His dad went to see him and bought me back Polaroid pic of Mikey. I went to sleep clutching that picture. Next thing I remembered was I was woken by two doctors to tell me they thought Mikey may have an infection but nothing serious so to get some sleep. Next morning I waited and waited to be taken to see my baby...I finally was taken up there at half ten. He looked huge in the incubator even though he was 5lb10 born...he was so long!! He looked grey but otherwise OK. Being young and naive I didn’t suspect his condition deteriorating. Day consisted of visitors. I remember feeling resentful at all these people seeing my baby when I couldn't cuddle him. That evening he really got worse...multi organ failure, had to be put on the ventilator and paralysed and morphine, platelet transfusions...too much to go into ...good job this is blogging..have tears remembering. At two in the morning it was arranged for him to be christened..I’m not religious or anything but it seemed a comfort at the time. I was asked if I wanted to hold him....to let him go in my arms...my desire to hold him went from 100% to zero and told them to fight for my little bundle. so that they did...next few days were critical and after five days he was taken off the ventilator and was breathing for himself...that felt like he had just been born all over again!!! A month later I took him home. He had his trials at SCBU but the important thing was I could take him home!!!
At first I found myself in denial of what had happened...it was like he had only been born a few days before...I became very protective of him. The first time I took him out was to a charity do...my oldest brother was doing a fire walk to raise money for the SCBU and when I arrived, my sister in law came and took Mikey off me to take him to show her family before I had chance to say anything! I remember being very upset and mortified...he was my baby to show off and even more so after what he had been through... but she wasn’t to know or even understand how and why I felt like I did.
I was told to expect some long term problems but not to the extent which I think they knew. I got it into my head that it would be just his liver as it was still degenerating. I thought he may need extra help from physio etc but it didn’t really dawn on me the shocks that were to follow. When he was six months old I was told he was showing early signs of cerebral palsy. By then we had portage, physio, OT, sensory impairment services etc etc coming in...my house didn’t feel like my own and to some extent my baby didn’t feel like my own...being told what to be doing with him...I just wanted them to let him be a baby...many a time I felt like screaming...ey up..my child is a baby, he is Mikey..leave us alone. But I know they were doing the best they could for him. Days filled up with these "professionals" and hospital visits to Lincoln Boston Sheffield and Nottingham. Looking back, I don’t know how I kept up with it!
The first official diagnosis we got was when he was fourteen months old. He had been for MRI at Sheffield and I knew we were going for the results from the neurologists... He said that Mikey has dystonic tetraplegic athetiod cp with some spasticity. Say it quick and it was still as scary. I just felt numb and very alone and cheated for myself and my little boy. It took weeks to learn to accept it, grieve, accept, loads of tears, feelings of guilt for feeling as I did and an intense sadness. Even now I get that sadness for Mikey. At first I would see other babies..feel jealous and couldn’t help comparing what they could do until I learnt the following poem
A child is like a butterfly
Some can fly higher than others
Each one is special
I still get sad when I see other eight year olds. Mikey has a cousin the same age and seeing them together I still feel sad at times.
Since then, it has been a absolute rollercoaster. In house therapy continued, though I sometimes felt overcrowded with them I knew they were doing the best for my little boy and I will be eternally grateful to his portage worker who really helped me to help him to turn corners and became and still is a great friend to Mikey and me. It is the small milestones that matter…not only because of their value in their own right but the effort gone through by all and especially Mikey to reach them. I remember sitting on the floor with his OT when he was a baby…she had a piece of foam and an electric carving knife trying to make a suitable hole in the foam to allow Mikey to learn to keep his head midline as it always went to one side… thus followed by months of making the poor child lay with his head on this pillow hence he learnt to keep his head midline which is a big milestone. Mikey was determined from day one. Problems arose and were dealt with as they did. At one point I was feeding him 15 times a day to have it thrown up all over the wall. Trial and error with meds meant his reflux was put into control and he narrowly escaped a PEG and eventually had his NG tube removed as I was able to feed him his liquid supplements through a bottle.
He has been given many “labels” One being Sotos syndrome which they found after genetic counselling. He has scoliosis for which he had a nine hour corrective surgery in October 2006. That has been a major improvement for his mobility but unfortunately his lungs haven't recovered and he is on oxygen therapy. His kidneys are a cause for concern too...one just isn't working but the other one is compensating yet showing signs of deterioration There are questions about Alexanders disease, a degenerative condition but I am sceptical. It is there in the back of my mind mainly because of the sensitive subject of life expectancy..but it is a grey area and I refuse to believe and dwell on the subject. He is living and that is what I have to concentrate on. More recently he has developed epilepsy and his lung function has not been great. Mikey has had many chances to "opt" out but he fights to stay here and keeps smiling, if he ends up crying it is not because of his effort to be happy.
He can now sit without using his hands to support himself and can even walk while holding hands for a short distance. He cannot talk..if there is one thing I would wish for him…it would be communication…just so he can tell me if he feels ill or wants something or simply to say my name. I am constantly saying “mama” to him in the hope he will copy…even an “m” would be everything but to no avail.
He attends a local school for children with physical and medical needs. He loves it! There is not a lot in life he doesn’t love…baths can be a battle though. Lol
His dad and I have been divorced for five years through his dads anger management problems (another not to be told here story) and it does make me sad that he misses out on having a dad as his dad doesn’t see him but life is what it is and I can be a mum and dad rolled into one. However I am with a wonderful man who unfortunately at the moment lives 150 miles away but who knows what the future may hold?
And exactly that…I don’t know what the future holds for Mikey…all I know is we face every day as it comes and appreciate each day as it has its own blessings…. The main one being Mikey's ever constant smiles and giggles.

(OK, so it wasnt that brief, Sorry and Happy new year 2020 :))

Tentative hello

...mmm blog world.. have been tempted many times to embark on this journey while following several of my friends blogs. I believe it to be theraputic, addictive amongst other things?
For me, if I manage to keep it going as regular as you hope, it is a chance to share a peek into the world of myself and my now eight year old son who has several disabilities and complex health needs. A chance for me to say what is really happening and should my readers gain any strength from that then all good.
I hope to be honest in my thoughts and feelings that I share so to give a true insight into what it is really like to be a mum of a child with his needs, to show that I am not a saint or someone to be admired. I am just a mum who loves her boy so much as any mum and have to deal with whatever is thrown at us. Not a saint or a coper... just a mum...