Wednesday, April 14, 2010

A New Phase

Well it's been a week of much soul searching, and as hard as it has been, we've arrived at the decision to have Samuel admitted back to Starship so I can have some respite. His health is great and he is happy and contented, so it's all a bit bizarre choosing to send him back. The accumulative effect of sleepless nights, hospital admissions and managing Samuel's complex cares along with the girls needs are starting to hit and I'm pretty exhausted with little reserves.....Francis leaves for a 2 week work trip tomorrow and with 2 days left of the school holidays now seemed as good a time as any, and I can get some time with the girls to do the things we can't do with Sam - school shoe shopping, hair cuts, swimming and maybe even the cinema!

On Tuesday we are having a meeting with the Trust that fund care givers in the home and I will be supported by hospital staff, social worker and home care nursing team to put forward our case for more funding for help/respite.

On each floor of Starship there are play specialists who ensure the kids of all ages are stimulated and have a variety of tasks. This, along with 'hospital grannies' and physios, will hopefully mean that all Sam's usual routines will continue and we will of course be popping in to hang out with him, and his doteing Nana will be too.

I'm disappointed in myself that we haven't been able to sort out respite in a better way and I know I will find it hard leaving him in hospital, but I also know I will sleep well at night knowing he is well cared for...and I won't have his usual interruptions.

I've just re-read the above and I'm conscious it sounds hard and cold.....I'm not meaning to be.... I'm actually not 'feeling' that much - maybe a bit numb, a little bit of relief, disappointment, frustration at the systems of funding, motherly guilt, sadness for the girls as they adore their brother.... so a mix of things whirling in my head but I'm trying to be pragmatic, knowing that this will mean our situation can be reassessed and we will have access to some more funding which means we can have either regular respite or have carers available that are trained sufficiently to handle a PICC line and TPN.

Here's leaving you above with a fresh photo of Sam from this morning, and our girls holiday activities - junk modelling with the mountain of boxes that bring Sam's supplies. They've been such great girls this holiday and haven't complained or moaned at being at home for most of the time.... and thankfully they're creative and easily pleased with a bunch of boxes! They had a great time making dolls houses in the sun with their friends.

X Shirl


The Doughertys said...

Hi guys, I really pray that your 'holiday' will bring refreshing to your soul and you will have the ability to pick up and keep going. You are truely amazing and I so pray Gods rich blessing on your family. What an amazing Mother/Nana you have as well. Thinking of you all at this time. Much love, Fi and Col

Anonymous said...

Hi Shirley,
We are praying for you that these "holiday" days will be a blessing to you all. Don't feel bad about little Sam - gorgeous happy chap - being back in hospital to give you a break. God promises rest for the weary and He understands. Praying for you all
Love Murray and Alison

Anonymous said...

Thinking of you Shirley and praying that you will have had some good rest/respite and not too much of 'the guilts'. Hilary

The Doughertys said...

I am continuing to pray for you all, hope you are feeling less exhausted and more refreshed. All our love. Fi

Marybeth Weber said...

Hi guys. I was really wondering if you could email me since Sam and Janessa have the same diagnosis.
I would really appreciate it!!! I need to talk to someone that is in a similar situation, since it's so rare, and no one seems to understand it. Please email me!!!

Marybeth said...

Hi guys. I was wondering if you guys could email me since Sam and Janessa have the same condition, I would really appreciate it!!! I kind of need to talk to someone who will understand this, since Sam has been through it already, I would really appreciate it!! God bless you and your family


Margo said...

You are amazing. Praying that God's peace, love and rest will be over ALL.
Margo xxxx

Christine MacD said...

Hi Shirley, some times hard decisions have to be made, and you need to look after yourself and the girls as well. Samuel will be well taken care of at Star. Hope you are feeling more rested and you had some good quality time with the girls. Sorry I missed meeting you all last week. Love the photos. Hope the meeting went well and more help will become available. Yay for Nanas. Never feel quilty you and Francis are doing an amazing job as parents.
love Christine MacD

Paul, Gemma, Abbie & Lewis said...

Marybeth Weber - please get in touch with us as our little girl has MMIHS and is now 3!

bronheslop said...

Big hugs to you all! We pray daily that God will provide what you need, and that Samuel will grow strong and healthy. Look forward to seeing you soon. xxoo The Heslops

Marybeth said...

Paul & Gemma, I have emailed you guys! Thank you for sending me your email address

- Marybeth

The Moorhouses said...

Hi Shirl, what a delightful looking wee guy Samuel is. - Your blog doesn't sound cold at all, it sounds like you're making a really hard decision but being relaistic about what you can cope with - and last time I looked that was in the "sensible parent" domain, so well done for all of you! DO take some time to rest and don't be tempted to fill your time with all the jobs that no doubt wait for you - they can wait some more, but rest can't.MUCH love and prayers to you all xxx Leisa and Russell