As the title suggests we are home after 3 months in hospital. Seraphina is now totally TPN fed ( for those who dont know what this is it is being fed through an artery into the heart ). Its a love- hate relationship as yes, she is 5 kilos heavier than she was when she was admitted BUT it puts a strain on her liver and will eventually damage it. At the moment though it is a neccessary evil as Seraphinas gut is now so fragile that she cannot even tolerate 5mls per hour of weak feed without it causing her extreme pain and diahorrea/ bleeding.
It was a tough three months for both of us Seraphina coped so so well with everything overall but thee were times when there were no smiles and her eyes told me the depth of her pain and tiredness.It was hard seeing her like this and being able to do nothing to help her. Sending her off to Theatre and sitting waiting doesnt get any easier.
Thankfully now she is home and although fragile and still needing pain relief to cope with the medicines going into her gut she is smiley and giggly again which is a real blessing.
And I have joined the exclusive 'TPN club' alongside other DIY nurses who manage I.V's, blood sugars,take bloods from lines etc etc.All those things that as a parent you never want to know how to do...I am SO thankful for two people who have helped me taking the first tentative steps into the realms of TPN and yet, who I have never met...Kim Hughes and Stephanie Nimmo (please see her inspiring blog www.suburbansuperwoman.blogspot.co.uk ).Both ladies are superwomen in my eyes and I really really hope one day to have the pleasure of meeting them.They have both been there to answer questions and Kim inparticular 'checks in' regularly to see how things are.If my arms could stretch through the computer screen I would hug you both...THANK YOU!
We have also had wonderful support from Postpals (www.postpals.co.uk ) who have been amazing in the lots and lots of ways they have cheered up Seraphina and her brothers and sisters and me too with such luxuries as furry blankets and chocolate.
Our Church has been wonderful, settingup a cooking rota and making sure my husband and children were fed twice a week to save David cooking. I had several visits from people from my Church including one lovely couple who I shared a DIY communion with in our hospital room - the best!
Another 'happening' and life changing moment for me was,just before we were discharged from hospital, the death of my father quite unexpectedly. Thanks to a couple from Church I was able to travel one evening from Sheffield to the hospitalwhere he was and back again ( it was a long night) to see him and say goodbye. I played Matt Redman ''The Fathers Song'' to him from my Ipod and told him that God loved him and was waiting for him along with my Sister Catherine and my little angel boy Jesse.I prayed his heart accepted Jesus at the end, my spirit feels at peace about it, the God I know would have run to meet him broken as he was. He passed away within a minute or two of me leaving the ward, the Nurses phoned for me to come back but by the time I got back to his bedside it was too late.He died on 25th April. Thank you to Madeline and Dave for looking after Seraphina and doing the late night taxiing so that I could be there at the last.
I can honestly say I have felt Gods presence with me throughout this hospital stay,even when I didn't understand what was going on.I felt he was there with me.
One day inparticular when things werent looking good at all for Seraphina I cried out to God and said ''I know you are listening but today I need that extra reassurance....If you are with me and hearing me then show me.,prove it...give me something i can hold in my hands''
Later that morning the Chaplain called..his greeting to me was ''I was just passing and you both had been on my mind and so thought I would pop by and give you this..'' He placed a card in my hands and at the time I didnt pay much attention, we chatted and he left and then I looked at the card.. on the front it simply said ''I AM with you'' and inside a verse about God hearing our prayers...
God gave me something I could hold in my hands.
This has been a real comfort to me throughout everything that followed including my Dads death.
Little did I know when I left home back at the start of February that I wouldnt hear or see my Dad awake again. Already memories fade...I try and hear my Dads voice in my head, to recall the sound but I cant...strangely my Heavenly Fathers voice is much much clearer than my earthly one now..in some respects it has been for a while. How things change.
So another chapter is begining all round, Im praying we get to stay home for a while now, Seraphina is due to have her beloved Cherub, a Rag doll kitten, at the end of this month. we have had some fun buying bits and pieces to prepare for his arrival..its amazing how excited one can get about a cat litter lol
David and I are both signed off our TPN training and I can do bloods and access her port/put up extra IV fluids/blood sugars etc etc.Still havent got my Nursey certificate :0) but I guess its in the post.
Thanks to everyone who has texted/emailed loved and supported us through the last three months
((((((((((((( HUG ))))))))))))
Wednesday, 23 May 2012
Saturday, 24 March 2012
Starting week 6
Thought I would do a little update as its been a while and so much has happened.
We are about to enter week 6 in 'the big brother house' called Sheffield Children's Hospital.
We have been to theatre twice, had numerous tests,bloods and drugs ranging from IV steroids to antibiotics.
So, where are we now?
Well,Seraphinas bowel has healed somewhat but is so fragile baggy and dismotile that it cannot tolerate full enteral feed again. the plan is to go home on home TPN ( Being fed via an artery into the heart) but ( if she can tolerate it ) a little weak enteral feed to try and protect her liver from the damaging side effects of TPN.
Seraphinas bowel has only two settings, STOP and GO. last time anything was put into her jejunostomy her bowel was in 'go' mode and subsequently what was put in came out pretty rapidly creating an impressive number of nappies and a lot of leaky mess.
now it seems it's set to 'STOP' .over the last 24 hours she has been fed very weak elemental feed at a mind blowing 5 mls an hour!! And nothing has come out of the other end....including the wireless capsule which was placed a week ago and should have passed through recording the inside of Seraphinas intestines for the consultant to see.Instead....it's looking increasingly likely that it spent 8 hours recording the same little piece of intestine in which it was placed ( so much for that brilliant idea then lol )
We are getting to that point in the stay where the Gastro team seem to drop to their hands and knees and crawl past Seraphinas cubicle window hoping the mad mother with a lot of questions ( namely how are you going to fix my daughter and have you got PCT funding for home PN yet ) doesn't poke her head round the door and spot them.One poor SHO was sent in yesterday ( he'd obviously drawn the short straw) and asked how she was and if she'd 'passed the capsule yet?' in a hopeful voice. When I replied no, I saw his downcast expression and felt so sorry for him I almost offered to make him a cup of tea!
so we begin week 6 hopeful of small steps forward.her discharge planning meeting is set for the 12th April so I'm homing that it won't be too many weeks after then that we are home.
I have been astounded by the love and support my family have received while We are away. my Church family cooking meals for my husband and children twice a week and the wonderful Postpals charity for their lovely postcards, letters and gifts for Seraphina and me which included a lovely furry blanket to snuggle under instead of the static clingy hospital ones :)
The other big news is that we have managed to find Seraphina a kitten for when she comes home.... A beautiful Ragdoll boy :) This is proving to be a source of excitement for all concerned and something I am also hanging on to...something wonderful to look forward to and aim for. Seraphina has been watching the video today that the breeder kindly sent of the litter....SO cute.
All in all we are doing ok. It's a hard road and one where I have had some really dark days but thanks to the prayers and love and support of those around us we are getting through it.I do feel so much for my other children and feel like I am making such a mess of being their mother,not being there when they need me and not being able to 'make it better ' for them. I can't clone myself though and Seraphina needs me...so I pray that they understand and know how much I love them all.I thank God for the support of our Church family.
I thank you ALL for your support....it's really left me speechless at times exactly how many people care about us both in 'real life' and online.
I hope this has updated you as where we are at now.will update again as and when.
Once again...THANK YOU xx
We are about to enter week 6 in 'the big brother house' called Sheffield Children's Hospital.
We have been to theatre twice, had numerous tests,bloods and drugs ranging from IV steroids to antibiotics.
So, where are we now?
Well,Seraphinas bowel has healed somewhat but is so fragile baggy and dismotile that it cannot tolerate full enteral feed again. the plan is to go home on home TPN ( Being fed via an artery into the heart) but ( if she can tolerate it ) a little weak enteral feed to try and protect her liver from the damaging side effects of TPN.
Seraphinas bowel has only two settings, STOP and GO. last time anything was put into her jejunostomy her bowel was in 'go' mode and subsequently what was put in came out pretty rapidly creating an impressive number of nappies and a lot of leaky mess.
now it seems it's set to 'STOP' .over the last 24 hours she has been fed very weak elemental feed at a mind blowing 5 mls an hour!! And nothing has come out of the other end....including the wireless capsule which was placed a week ago and should have passed through recording the inside of Seraphinas intestines for the consultant to see.Instead....it's looking increasingly likely that it spent 8 hours recording the same little piece of intestine in which it was placed ( so much for that brilliant idea then lol )
We are getting to that point in the stay where the Gastro team seem to drop to their hands and knees and crawl past Seraphinas cubicle window hoping the mad mother with a lot of questions ( namely how are you going to fix my daughter and have you got PCT funding for home PN yet ) doesn't poke her head round the door and spot them.One poor SHO was sent in yesterday ( he'd obviously drawn the short straw) and asked how she was and if she'd 'passed the capsule yet?' in a hopeful voice. When I replied no, I saw his downcast expression and felt so sorry for him I almost offered to make him a cup of tea!
so we begin week 6 hopeful of small steps forward.her discharge planning meeting is set for the 12th April so I'm homing that it won't be too many weeks after then that we are home.
I have been astounded by the love and support my family have received while We are away. my Church family cooking meals for my husband and children twice a week and the wonderful Postpals charity for their lovely postcards, letters and gifts for Seraphina and me which included a lovely furry blanket to snuggle under instead of the static clingy hospital ones :)
The other big news is that we have managed to find Seraphina a kitten for when she comes home.... A beautiful Ragdoll boy :) This is proving to be a source of excitement for all concerned and something I am also hanging on to...something wonderful to look forward to and aim for. Seraphina has been watching the video today that the breeder kindly sent of the litter....SO cute.
All in all we are doing ok. It's a hard road and one where I have had some really dark days but thanks to the prayers and love and support of those around us we are getting through it.I do feel so much for my other children and feel like I am making such a mess of being their mother,not being there when they need me and not being able to 'make it better ' for them. I can't clone myself though and Seraphina needs me...so I pray that they understand and know how much I love them all.I thank God for the support of our Church family.
I thank you ALL for your support....it's really left me speechless at times exactly how many people care about us both in 'real life' and online.
I hope this has updated you as where we are at now.will update again as and when.
Once again...THANK YOU xx
Sunday, 11 March 2012
Sunday 11th March
God my Rock, my strength,my all
Will you catch me when I fall
I had not planned to take this trip
Steady me when I start to slip.
May I always treat others with love
and patience from you Father above.
No matter how dog tired I get
Remind me you've not failed me yet.
With your Holy Spirit I stand
Side by side and hand in hand.
She looks and feels a breeze, a dove
Assuring her she's wrapped in a circle of love.
Will you catch me when I fall
I had not planned to take this trip
Steady me when I start to slip.
May I always treat others with love
and patience from you Father above.
No matter how dog tired I get
Remind me you've not failed me yet.
With your Holy Spirit I stand
Side by side and hand in hand.
She looks and feels a breeze, a dove
Assuring her she's wrapped in a circle of love.
Monday, 27 February 2012
Day 8 in the big brother house
The title of this post is a bit of a joke.David started it and I've a feeling it will continue through the weeks.
it's been a really tough week to say the least but one where I have felt overwhelmed by the unexpected support from my Facebook friends and other special needs mums.from an unexpected package, lots of supportive comments on my facebook wall , wondeful pledges of prayer from followers on twitter to an anonymous Dominos pizza order for me it's all happened this week.
I have tried to keep people informed via Facebook but for those of you who don't go on there this is what happened....
When we got admitted Seraphina was in a poor state, she wasn't tolerating feed or dioralyte, she had diahorrea and every nappy contained blood.she was sweating with pain and no- one really knew what was going on.
She had bloods done and was out onto IV fluids via her port.after a chat with the consultant they went to book an endoscopy and colonoscopy for the 1 st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.
She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.
When it went off down I went expecting to be called straight in to see her. I wasn't , instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That's when alarm bells went off.
He explained that their findings had been extraordinary .Seraphinas colon was visually like bubble wrap so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation . E surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel.He did. Unfortunately when he took the biopsy he described it as 'trying to biopsy cling film' and her bowel perforated. he said that Seraphinas bowel was so bad that it would never recover and she would not be able to be fed via tube again...it would be TPN only ( which is feeding via a vein)
The days that followed Seraphina required more and more morphine and other pain medication had to be added in,she bled out of her gastrostomy, her heart rate dropped very low..so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.
Saturday was an exceptionally bad day..her bowel spontaneously perforated again and we were told it could happen again at any time. for safety's sake she was already on multiple antibiotics.
Today has been better, she's still on morphine but not needing as many boluses and has sat up in her chair for a while.
the plan is a long one. in 2-3 weeks she will go back to theatre to see if 3 weeks on TPN has improved her bowel any. She will have an endoscopic evaluation,something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds ( this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic ally ) she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.
I can reel all this off quickly now but on Tuesday evening I was in shock...total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. if the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides.
So we are in another 3 weeks till surgery and then they have said around another 7 weeks afterwards....a loooonnnng time.
when she comes out she is going to be spoilt...she has wanted a cat for a while and so by hook or by crook I want to get her one. bless her even on the worst days when lying lethargic and worn out from pain, the nurse said to her "are you getting a kitten?' Nd her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess.... Somehow we will find the money to buy her one.Its the least we can do after all she's going through.
Thank you for all the precious people who have supported us through this week.thank you for all the prayers...it's so good to know that there is such a cry to heaven going on for my gorgeous girl.
To be continued.....
it's been a really tough week to say the least but one where I have felt overwhelmed by the unexpected support from my Facebook friends and other special needs mums.from an unexpected package, lots of supportive comments on my facebook wall , wondeful pledges of prayer from followers on twitter to an anonymous Dominos pizza order for me it's all happened this week.
I have tried to keep people informed via Facebook but for those of you who don't go on there this is what happened....
When we got admitted Seraphina was in a poor state, she wasn't tolerating feed or dioralyte, she had diahorrea and every nappy contained blood.she was sweating with pain and no- one really knew what was going on.
She had bloods done and was out onto IV fluids via her port.after a chat with the consultant they went to book an endoscopy and colonoscopy for the 1 st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.
She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.
When it went off down I went expecting to be called straight in to see her. I wasn't , instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That's when alarm bells went off.
He explained that their findings had been extraordinary .Seraphinas colon was visually like bubble wrap so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation . E surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel.He did. Unfortunately when he took the biopsy he described it as 'trying to biopsy cling film' and her bowel perforated. he said that Seraphinas bowel was so bad that it would never recover and she would not be able to be fed via tube again...it would be TPN only ( which is feeding via a vein)
The days that followed Seraphina required more and more morphine and other pain medication had to be added in,she bled out of her gastrostomy, her heart rate dropped very low..so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.
Saturday was an exceptionally bad day..her bowel spontaneously perforated again and we were told it could happen again at any time. for safety's sake she was already on multiple antibiotics.
Today has been better, she's still on morphine but not needing as many boluses and has sat up in her chair for a while.
the plan is a long one. in 2-3 weeks she will go back to theatre to see if 3 weeks on TPN has improved her bowel any. She will have an endoscopic evaluation,something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds ( this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic ally ) she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.
I can reel all this off quickly now but on Tuesday evening I was in shock...total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. if the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides.
So we are in another 3 weeks till surgery and then they have said around another 7 weeks afterwards....a loooonnnng time.
when she comes out she is going to be spoilt...she has wanted a cat for a while and so by hook or by crook I want to get her one. bless her even on the worst days when lying lethargic and worn out from pain, the nurse said to her "are you getting a kitten?' Nd her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess.... Somehow we will find the money to buy her one.Its the least we can do after all she's going through.
Thank you for all the precious people who have supported us through this week.thank you for all the prayers...it's so good to know that there is such a cry to heaven going on for my gorgeous girl.
To be continued.....
Thursday, 16 February 2012
One Word
This year I decided to join 'One Word three sixty five' as an alternative to new years resolutions.
My one word for this year was - Strength.
Since choosing this word I seem to have had many opportunities which require it. Strength of mind, of character, strength in my faith etc neer mind physical strength.
Seraphina has not being doing so well. We havent had much in the way of stability over the last weeks. one minute shes up and her gut seems to be coping and the next shes down and having diahorrea and bloating in her tummy. Shes also picked up infections really quickly requiring antibiotics which mess up her gut even more. We have had many really close calls with hospital. but we have got through them.
Now however is a different matter, shes had another bowel bleed, not masses, but enough. she had to be put back on dioralyte as she wasnt tolerating feed, shes lost another kilo and a bit in weight over the last two weeks. The childrens Nurse and the dietician phoned the hospital...so did I.
The consultant phoned me yesterday. He wants Seraph admitted indefnitely, to start her on long term TPN which means she will be fed through a vein. she will have surgery whilst in to find out whats going on and how to treat her for the best. He has mentioned in the past that she may be better off if we remove her Colon. ?? whether that is correct or if that will end up happening.
Im scared.
I know there are other mums out there with daughters on TPN, I know it helps enormously, but I also know that long term it kills...by destroying the liver. TPN is a last resort.
I need strength...Strength for Seraphina, to let go and realise I have done all I can to keep her at home and enterally fed, to love her and help her through this next step on our Rett journey. I need strength to keep myself going when all I want to do is curl up and cry and need strength to walk away from my children on Monday morning (Eve's 9th Birthday) to drive over 100 miles away to hospital when I dont know how long it will be before I see them again.
Every time I leave them I see their hearts and mine break a little more.
God give us strength because we cant do this alone.
My one word for this year was - Strength.
Since choosing this word I seem to have had many opportunities which require it. Strength of mind, of character, strength in my faith etc neer mind physical strength.
Seraphina has not being doing so well. We havent had much in the way of stability over the last weeks. one minute shes up and her gut seems to be coping and the next shes down and having diahorrea and bloating in her tummy. Shes also picked up infections really quickly requiring antibiotics which mess up her gut even more. We have had many really close calls with hospital. but we have got through them.
Now however is a different matter, shes had another bowel bleed, not masses, but enough. she had to be put back on dioralyte as she wasnt tolerating feed, shes lost another kilo and a bit in weight over the last two weeks. The childrens Nurse and the dietician phoned the hospital...so did I.
The consultant phoned me yesterday. He wants Seraph admitted indefnitely, to start her on long term TPN which means she will be fed through a vein. she will have surgery whilst in to find out whats going on and how to treat her for the best. He has mentioned in the past that she may be better off if we remove her Colon. ?? whether that is correct or if that will end up happening.
Im scared.
I know there are other mums out there with daughters on TPN, I know it helps enormously, but I also know that long term it kills...by destroying the liver. TPN is a last resort.
I need strength...Strength for Seraphina, to let go and realise I have done all I can to keep her at home and enterally fed, to love her and help her through this next step on our Rett journey. I need strength to keep myself going when all I want to do is curl up and cry and need strength to walk away from my children on Monday morning (Eve's 9th Birthday) to drive over 100 miles away to hospital when I dont know how long it will be before I see them again.
Every time I leave them I see their hearts and mine break a little more.
God give us strength because we cant do this alone.
Friday, 9 December 2011
....and Christmas came early
As many of you know we have had a tough few weeks. Seraphina s still only tolerating half strength feed, she has lost a considerable amount of weight. We went up to Sheffield again and have had to start another medicine called azathioprine which is an immunosuppressant as well as pushing the steroids up to maximum again as she doesnt tolerate them being lowered.
We saw the opthalmologist this week who again confirmed that she has a cortical visual impairment (although not too bad) and then we saw our local consultant who looked at a lump I had been a little concerned about in her tummy and confirmed it was an incisional hernia (her bowel has herniated through a past operation incision ) so this means another op for my girl to fix it.
Then we had to go to hospital twice with temperatures so that they could check her blood cell count due to being imunosupressed so they could see if she was able to fight off the infection and have medicine accordingly.
Life seems to be a game of ''hospital hokey cokey' at the moment and the other children are also feeling the strain,particularly the eldest three, . their schools have been good reducing the amount of homework they have to complete and we have spoken to them all and prayed together but Its hard when they ask you why God hasn't healed Seraphina completely yet.
I have no answers for that ... my faith is still strong ,but my longing to see my girl healed is too.
Yesterday was one of 'those' days.I was looking at the photos and pictures we had taken only a few days ago ...Seraphinas 5th Birthday.How my heart ached to see her eat some cake, open her own presents,blow out her own birthday candles...speak and run around like any other 5 year old girL
She had spent the morning crying with tummy ache, hadnt been well enough for physio for months and was having more spasms.
I cried out to God ...WHY?? Have you forgotten her ??? PLEASE show me you still care...that you remember my little girls name!!!
I immediately felt bad about my outburst even though I knew that God didnt mind.
For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. Isa 55:8
came to mind and I left it there and carrried on with the rest of the day.David had one of his rare working from home days and we had an appointment in the afternoon.
and then, a couple of hours later....with Gods help my little girl gave us the BEST Christmas present we could ask for
I grabbed my camera phone straight away and tried to capture some of it on film before she got too tired...she had already walked the length of the living room from the hallway and I just got the tail end of her walking here...Im sure you get the idea :-). She had walked with assistance for the first time a few months ago but this was something else!! watch out Christmas tree this year :0) !!!
I know many of you wont agree with this but this is WHAT I believe
God hasn't forgotten her...things may not be panning out the way I thought they would,or hoped they would but he DEFINITELY hasnt forgotten her and I believe this is what he was trying to tell me.
HIS ways not mine....always.
We saw the opthalmologist this week who again confirmed that she has a cortical visual impairment (although not too bad) and then we saw our local consultant who looked at a lump I had been a little concerned about in her tummy and confirmed it was an incisional hernia (her bowel has herniated through a past operation incision ) so this means another op for my girl to fix it.
Then we had to go to hospital twice with temperatures so that they could check her blood cell count due to being imunosupressed so they could see if she was able to fight off the infection and have medicine accordingly.
Life seems to be a game of ''hospital hokey cokey' at the moment and the other children are also feeling the strain,particularly the eldest three, . their schools have been good reducing the amount of homework they have to complete and we have spoken to them all and prayed together but Its hard when they ask you why God hasn't healed Seraphina completely yet.
I have no answers for that ... my faith is still strong ,but my longing to see my girl healed is too.
Yesterday was one of 'those' days.I was looking at the photos and pictures we had taken only a few days ago ...Seraphinas 5th Birthday.How my heart ached to see her eat some cake, open her own presents,blow out her own birthday candles...speak and run around like any other 5 year old girL
She had spent the morning crying with tummy ache, hadnt been well enough for physio for months and was having more spasms.
I cried out to God ...WHY?? Have you forgotten her ??? PLEASE show me you still care...that you remember my little girls name!!!
I immediately felt bad about my outburst even though I knew that God didnt mind.
For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. Isa 55:8
came to mind and I left it there and carrried on with the rest of the day.David had one of his rare working from home days and we had an appointment in the afternoon.
and then, a couple of hours later....with Gods help my little girl gave us the BEST Christmas present we could ask for
I grabbed my camera phone straight away and tried to capture some of it on film before she got too tired...she had already walked the length of the living room from the hallway and I just got the tail end of her walking here...Im sure you get the idea :-). She had walked with assistance for the first time a few months ago but this was something else!! watch out Christmas tree this year :0) !!!
I know many of you wont agree with this but this is WHAT I believe
God hasn't forgotten her...things may not be panning out the way I thought they would,or hoped they would but he DEFINITELY hasnt forgotten her and I believe this is what he was trying to tell me.
HIS ways not mine....always.
Thursday, 1 December 2011
Tidy your room!
How many times a week can I hear myself shout this up the stairs to my children. Ive threatened no pocket money if they dont get it done.I have pleaded with them to move stuff before I literally break my neck over stuff that has been strewn across the floor.
Ive also gone into their rooms much to their dismay with a bin bag and thrown stuff away when they havent tidied up.
Im having some little trousers made for Seraphina and the ebay person asked for her waist measurment and leg length so I went to my bedroom to find a tape measure. I couldnt find it.
I decided to look in my bedside drawers..I pulled the first one open to be showered with bits of paper overflowing from it...oops, maybe I should tidy this. I pulled it out and masses of stuff fell out the back and onto the next equally overflowing draw and onto the floor where my mountainous pile of books toppled over *blush*...how did the pile get so high???!?
I started to go through the drawers bit by bit and was initially horrified at the mixed up jumble of things I found h broken hair accessory, a scribbled on envelope, a squished lipstick, a toy train, receipts, notebooks, hairbands,a bookmark the list is endless...bits of paper folded up with notes on a chocolate wrapper......ok more than one :-)
Then I looked more closely..each item told a story
The hair accessory was one I had bought and Eve had pinched without me knowing when she was about 4, I still remember her coming downstairs in one of my dresses and high heels with this pearly hair accessory twisted crookedly into her hair which was tumbling out of it one side and sticking up at a comical angle the other side.I was all ready to shout at her for pinching it until she said she was trying to be ''princess mummy''........and she did look really cute.
The scribbled on envelope contained a little tooth and on the front David had written 'To the tooth fairy'' and then it had been painstakingly signed by a very little boy ''J o s e p h'' surrounded by lots of kisses and a drawing of a car.
The reciepts were from things bought a few Christmases ago, things they had been 'desperate' for and I had felt so over the moon at being able to get...I laughed as I read them because can still hear their voices as they nagged me for the hundreth time and I had already got the things secreted away :-)
The bookmark was from a Christian event I had gone to...I was so desperate for a little brother for Joseph but it wasnt happening even though I had felt God say he would answer my prayer. Someone prayed with me that night and at the end of the night everyone got given a bookmark..mine said ''God always keeps his promises ''............and he did only a month later when we found we were expecting Samuel.
The squished lipstick was one Aimee 'borrowed' aged about 3 and covered her face in it whilst the train is a spare Thomas the tank engine of Josephs that he wrapped up for my birthday one year ...
These are all things which would look like rubbish to someone who didnt understand, but each one is a memory.
Memories, each one so so special....Im a squirrel, I admit it and I think my children have inherited the 'squirreling' gene.
I'll still be asking them to tidy their rooms.....but maybe I wont be so ruthless when throwing things away and let them keep thier memories too.
Ive also made a decision
This year Im going to give my children a different present, one I have only done once before and one which money cant buy.
Im going to write them a letter each, with all these memories in, memories individual to each of them, little reminders of their growing up, how loved and special each of them is and how blessed I am to be their Mum.. meanwhile I might put this stuff back and save tidying my room till another day :)
Ive also gone into their rooms much to their dismay with a bin bag and thrown stuff away when they havent tidied up.
Im having some little trousers made for Seraphina and the ebay person asked for her waist measurment and leg length so I went to my bedroom to find a tape measure. I couldnt find it.
I decided to look in my bedside drawers..I pulled the first one open to be showered with bits of paper overflowing from it...oops, maybe I should tidy this. I pulled it out and masses of stuff fell out the back and onto the next equally overflowing draw and onto the floor where my mountainous pile of books toppled over *blush*...how did the pile get so high???!?
I started to go through the drawers bit by bit and was initially horrified at the mixed up jumble of things I found h broken hair accessory, a scribbled on envelope, a squished lipstick, a toy train, receipts, notebooks, hairbands,a bookmark the list is endless...bits of paper folded up with notes on a chocolate wrapper......ok more than one :-)
Then I looked more closely..each item told a story
The hair accessory was one I had bought and Eve had pinched without me knowing when she was about 4, I still remember her coming downstairs in one of my dresses and high heels with this pearly hair accessory twisted crookedly into her hair which was tumbling out of it one side and sticking up at a comical angle the other side.I was all ready to shout at her for pinching it until she said she was trying to be ''princess mummy''........and she did look really cute.
The scribbled on envelope contained a little tooth and on the front David had written 'To the tooth fairy'' and then it had been painstakingly signed by a very little boy ''J o s e p h'' surrounded by lots of kisses and a drawing of a car.
The reciepts were from things bought a few Christmases ago, things they had been 'desperate' for and I had felt so over the moon at being able to get...I laughed as I read them because can still hear their voices as they nagged me for the hundreth time and I had already got the things secreted away :-)
The bookmark was from a Christian event I had gone to...I was so desperate for a little brother for Joseph but it wasnt happening even though I had felt God say he would answer my prayer. Someone prayed with me that night and at the end of the night everyone got given a bookmark..mine said ''God always keeps his promises ''............and he did only a month later when we found we were expecting Samuel.
The squished lipstick was one Aimee 'borrowed' aged about 3 and covered her face in it whilst the train is a spare Thomas the tank engine of Josephs that he wrapped up for my birthday one year ...
These are all things which would look like rubbish to someone who didnt understand, but each one is a memory.
Memories, each one so so special....Im a squirrel, I admit it and I think my children have inherited the 'squirreling' gene.
I'll still be asking them to tidy their rooms.....but maybe I wont be so ruthless when throwing things away and let them keep thier memories too.
Ive also made a decision
This year Im going to give my children a different present, one I have only done once before and one which money cant buy.
Im going to write them a letter each, with all these memories in, memories individual to each of them, little reminders of their growing up, how loved and special each of them is and how blessed I am to be their Mum.. meanwhile I might put this stuff back and save tidying my room till another day :)
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