It's 10 p.m.... Do you know where your children are?
Well it didn't take a phone call from the hospital to answer that one. The running joke on the 9th Floor-- it's ok, with a kid like MC we're allowed to joke about such things-- is that he thinks he's got a weekend home in the PICU. In fact, this past Friday marks his 5th Friday night PICU transfer.
And while it obviously means that he did not spend his very first weekend at H-O-M-E, it's probably for the best, as Princess took the time to prep for his arrival by marking her territory with her own baby germs.
All in all, not our best week. 2 sick children, 2 exhausted parents and another awkward holiday celebrated with a family apart.
While I do my best to maintain a positive aura, this past week made it near impossible. MC's seizures were living up to their "intractable" nature, and regardless of how many sedatives we administered, we just couldn't make him comfortable.
From the day he was born I have always told MC, every day, just how proud of him I am for working so very very hard.
It's only natural. As parents, we encourage our children to work hard, to never give up, to try, try, try again if at first they don't succeed.
But along with the desire to see our children succeed is an underlying will that they find happiness. Because for most, the two go hand in hand-- work hard to achieve success and you will, indeed, find happiness.
Unfortunately, every day is a constant reminder that MC is not "most."
With this past week came the dreadful realization that for MC, there may come a point in time when working hard no longer brings him happiness.
Today, just like every other day, I told MC that I am so very very proud of him for working so hard.
But, today, for the first time, I added something else.
Today, I told MC that should life ever get too difficult, should he no longer have the energy to keep trying, should he decide that all the things that once brought him joy in life are no longer bringing him peace, that I will no longer ask him to work so hard, that I will always love him, and that, most importantly, I will still be so very very proud of him... just so long as he is happy.
Well it didn't take a phone call from the hospital to answer that one. The running joke on the 9th Floor-- it's ok, with a kid like MC we're allowed to joke about such things-- is that he thinks he's got a weekend home in the PICU. In fact, this past Friday marks his 5th Friday night PICU transfer.
And while it obviously means that he did not spend his very first weekend at H-O-M-E, it's probably for the best, as Princess took the time to prep for his arrival by marking her territory with her own baby germs.
All in all, not our best week. 2 sick children, 2 exhausted parents and another awkward holiday celebrated with a family apart.
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| We set Princess up at the door to hand out candy, however, she was far more interested in eating the bowl. |
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| Beautiful Tigger No. 1 |
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| Beautiful Tigger No. 2 |
From the day he was born I have always told MC, every day, just how proud of him I am for working so very very hard.
It's only natural. As parents, we encourage our children to work hard, to never give up, to try, try, try again if at first they don't succeed.
But along with the desire to see our children succeed is an underlying will that they find happiness. Because for most, the two go hand in hand-- work hard to achieve success and you will, indeed, find happiness.
Unfortunately, every day is a constant reminder that MC is not "most."
With this past week came the dreadful realization that for MC, there may come a point in time when working hard no longer brings him happiness.
Today, just like every other day, I told MC that I am so very very proud of him for working so hard.
But, today, for the first time, I added something else.
Today, I told MC that should life ever get too difficult, should he no longer have the energy to keep trying, should he decide that all the things that once brought him joy in life are no longer bringing him peace, that I will no longer ask him to work so hard, that I will always love him, and that, most importantly, I will still be so very very proud of him... just so long as he is happy.
That's so wonderful and selfless of you. Love and hugs to you all x
ReplyDeleteI'm speechless. Little, cute MC. Blessings to you and tons of love.
ReplyDeleteHugs to you.
ReplyDeleteYou are such an amazing Mother. Thanks for sharing your journey. Your children are beautiful and whenever you write you inspire me to be a better Mother to my son. You are in my prayers and so is your beautiful son.
ReplyDeleteHow sad to be having to give that message to a 7-month old baby (they're 7 months, right??). Your love & pride for Hayden is so apparent in that video, and it's a wonderful message you are giving him. Brought tears to my eyes. He's just so little, and it all must be so scary for him (and you). I do hope he can go a longer stretch without complications, and you can eventually bring him home.
ReplyDeletehow difficult as a parent to let your child know that... Your two tiggers are beautiful.
ReplyDeleteI had tears & smiles in that post, you have been through so much to have your beautiful children. My heart goes out to you and when I saw the new photos of MC I thought that he looked really tired. I have everything crossed that he will overcome all of these obsticles that he has to go through....
ReplyDeleteLove to all of you from Sydney Australia, I know all the Aussie's would be behind you...
I don't really know what to write. I'm so sad but very proud of you B. MC and Princess are beautiful.
ReplyDeleteHugs xxx
ReplyDeleteThat was brave...
ReplyDeleteYes, you've got it! Sometimes what we want for our children is not their destiny. A life is a whole life, no matter how long or how short. The last photo looks as if he understands. If they can be brave enough to live it, we can be brave enough to see them through the journey. I wish you all peace and comfort.
ReplyDeleteBTDT
Sending hugs and kisses to you all from across the ocean. It's so hard to say those sorts of things to yourself let alone to tell someone you dearly love - your son that it is okay if he is too tired and not happy to keep fighting. He is a precious little one and I hope and pray he gets stronger. Look after yourselves xxxxx mel
ReplyDeleteI just keep sending prayers your way, your boy MC is such a cutie and so strong.
ReplyDeleteMC is clearly a beautiful handsome boy, and both children look wonderful in full Tigger regalia.
ReplyDeleteYour children are love and are loved and ALWAYS will be. This is a blessing to our world. I hope your worlds are always filled with love.
This is so sad, and my heart breaks for you and your family. Those are very nice words to MC. All I want for you and your family is to be happy and have peace. Hugs. xoxo
ReplyDeleteHeartfelt, candid, and selfless. You're amazing B. Much warmth and comfort to you all.
ReplyDeleteYour family, and your love for your family has moved me to tears again. The daily struggle for life for MC is staggering. I suspect he has been, and is, loved more than many get to experience in a much longer lifetime. Such a gift that you love MC enough to have that hard conversation. I wish it weren't so.
ReplyDeletex Bridg
Continuing to pray for you and your family.
ReplyDeleteHayden and Scarlett are beautiful. The wonderful thing about Tiggers is Tiggers are wonderful things, Their tops are made out of rubber, their bottoms are made out of springs, They're bouncy, trouncy, flouncy, pouncy, fun, fun, fun, fun, fun! But the most wonderful thing about Tiggers - is their wonderful, strong, loving mum! Those are some lucky Tiggers - luv from philly xxx
ReplyDeleteSelfless words,beautiful words(teared up on this post)...the hardest thing that a parent can do is to accept and let go under these circumstances....you are brave and inspirational and so is Hayden.May the rest of his days/months/years bring you and your family a lifetime of peacefulness..HUGS...
ReplyDeletekathy
We love you little guy.
ReplyDeleteThe love of a Mother ...GOD BE WITH YOU.HUGS HUGS AND MORE HUGS
ReplyDeleteI am speechless, your strenght is amazing, sending heaps of love.
ReplyDeleteI&D
I am in tears you are all amazing and MC truly wonderful!!
ReplyDeleteThink of you everyday!!
xx
this is an important part of the process of grief.
ReplyDeleteimportant for you, and for him.
he is loved, and that, my friend, is the summation of all that it is to live, to have a life. to feel the love of his mom and dad.
what happens in the next few days, weeks, months, and years, will all be a continuing part of hayden's life, ever-connected to yours. but it is out of your control, unfortunately... i know you know that, and you are doing such an amazing job of loving him, and grieving him too.
thinking of you...
hayden is beautiful... what a perfect smile!
Your two tiggers are adorable. Thinking of you four.
ReplyDeleteYou are a very selfless, amazing mama. Your love for your boy is truely unconditional for you to give him those words. My heart is with you and your family.
ReplyDeletekd
((Hugs)) big squashy ones for you guys and your little tiggers xx
ReplyDeleteYou are amazing and your family is just incredible. MC is truly an inspiration to all, as are you as a mommy! What wonderful and comforting words for him to hear, but what difficult words to say. This little boy has filled my heart and I think about and pray for him every day. MC - you are truly what superheroes are made of!
ReplyDeleteYou are an amazing mother to your perfect boy.
ReplyDeleteYou are an amazing mother to your perfect kids.
ReplyDeleteGosh. Speechless. Big hug to your two Tiggers.
ReplyDeleteYou leave me speechless and as always in awe of you as a mother... my heart goes out to you ...love and enjoy as much as you can and hugs to you all. Take care of you for Hayden's sake :)
ReplyDeleteive been following your blog for a very long time . I truly hope that Mc is having a better week and is able to come home real soon . My thoughts and prays to your family .
ReplyDeletejerry in orlando fl
What a lucky thing, that the most special of boys just so happens to have the most special of mothers. And vice versa. You are beautiful, Bernadette. And so is Hayden's life and journey, no matter where it takes all of you.
ReplyDeleteSending love and peace. You and your family are so strong.
ReplyDeleteI just want to say, like a lot of other people have said, that you are the kind of woman who was destined to be a mother. Princess and MC are lucky to have you.
ReplyDeleteA mothers love is never-ending and selfless.
ReplyDeleteYou are the mother we all aspire to be.
(P.S. The wonderful thing about Tiggers
Is Tiggers are wonderful things)
:-)