Imagine getting a phone call like this at 8 o'clock on a Wednesday night. Imagine a doctor, prefacing her statement with an apology that she doesn't mean to be blunt, and then ever so bluntly uttering those eight gutting words. Imagine that when you attempt to protest that your son is not, in fact, dying, that she assures you that yes he is because it's right there in his chart.
Imagine if somebody told you that your baby had only 3 months to live.
I do not know whether MC has only 3 months to live. I do not know whether he has 3 months or 3 years or 3 decades to live. I do not know what made that doctor's crystal ball so infinitely more powerful than my own, such that she was confident in predicting how long my child will live.
What I do know is that MC and Princess turned 7 months today.
I know that I celebrated today.
And I know that I celebrated yesterday. I know that I will again celebrate tomorrow and that I will continue to celebrate for all the days to come.
Because MC has taught me to do so.
No doubt there are times that I envy other mothers. Mothers whose biggest decisions revolve around home care versus day care, returning to work versus staying at home, store-bought versus homemade food-- mothers who make decisions that I will never have to make for MC.
Mothers who will never have to endure phone calls like the above, and as a result will blissfully parent under the premise that their children's lives will extend long beyond their own.
But I think that if they knew me, they would, indeed, envy me too.
Envy me because I can remember the exact moment that each of my children experienced fresh air for the first (and in MC's case, the only) time.
Envy me because rather than stress over the planning of an elaborate baptism, I partook in the most enchanting spur of the moment hospital bedside ceremony, blessing one Superhero and a Princess to the sounds of iPad Hindi chants.
Envy me because I bravely wake my daughter before I leave for the hospital each morning... just to see her smile.
Envy me because I will never fret over the meeting of "milestones," as watching MC perform the simple act of breathing will be cause enough for celebration on any given day.
Envy me because should life take one of my children sooner than seems fair, I will continue to live knowing that I have celebrated each and every second of every minute of every day that I was given with them.
Love,
A Mommy
Imagine if somebody told you that your baby had only 3 months to live.
I do not know whether MC has only 3 months to live. I do not know whether he has 3 months or 3 years or 3 decades to live. I do not know what made that doctor's crystal ball so infinitely more powerful than my own, such that she was confident in predicting how long my child will live.
What I do know is that MC and Princess turned 7 months today.
I know that I celebrated today.
And I know that I celebrated yesterday. I know that I will again celebrate tomorrow and that I will continue to celebrate for all the days to come.
Because MC has taught me to do so.
No doubt there are times that I envy other mothers. Mothers whose biggest decisions revolve around home care versus day care, returning to work versus staying at home, store-bought versus homemade food-- mothers who make decisions that I will never have to make for MC.
Mothers who will never have to endure phone calls like the above, and as a result will blissfully parent under the premise that their children's lives will extend long beyond their own.
Envy me because I can remember the exact moment that each of my children experienced fresh air for the first (and in MC's case, the only) time.
Envy me because rather than stress over the planning of an elaborate baptism, I partook in the most enchanting spur of the moment hospital bedside ceremony, blessing one Superhero and a Princess to the sounds of iPad Hindi chants.
Envy me because I bravely wake my daughter before I leave for the hospital each morning... just to see her smile.
Envy me because I will never fret over the meeting of "milestones," as watching MC perform the simple act of breathing will be cause enough for celebration on any given day.
Happy 7 Months to One Princess and a Superhero.
Love,
A Mommy
I'm here from ICLW and am shocked by, and so sorry to read, those devastating words you heard from the doctor. It sounds like you are making the most of every minute and creating some wonderful memories with your two babies while your little boy is still with you. Wishing you many more memories in the day to come.
ReplyDeleteYou have managed to turn what could have been from the title, a traumatic worrying, hurrendously sad post about loss and stress, into a thoroughly inspiring, thought-provoking, enlightening piece of writing. Thankyou for sharing and for helping us all see the strength of the human soul. X
ReplyDeleteAs I have read your blog for the the last several months I am lost for words. I know whatever I write will not help you guys at all, but today I want you to know I am thinking of you all. I have had a similar experience to yours noted in this post and I know the devastation it brings. I also know that this experience changed me for life, as it has you. I continue to celebrate the little things in life and not take myself so seriously. Whatever the outcome for MC, he has touched the world, and will continue til to do so.
ReplyDeleteThere are no words.
ReplyDeleteThank you for making us all appreciate the things that matter most.
We all love you.
Bless you and your family xoxo
ReplyDeleteThis brings back the painful conversations we had with my sons’ doctors. I can tell you that I am proud that you are embracing each moment with MC because whether he passes in 3 months or decades later. It is these moments that will carry you through the pain. My prayers are with you and your family.
ReplyDeleteAs a retired health care professional I feel the need to apologize for this woman's thoughtless and insensitive remarks. Doctors are not predictors of the future and to state that Hayden has a known time limit to his days on this earth are just crazy. No one knowns that, to try to limit a child that way is just cruel to his parents. You are in my thoughts and prayers.
ReplyDeleteThere are no words to express what is possibly going on in your head right now. May the higher powers bless you and your family always.
ReplyDeleteLiz
I think her phone call to you was insensitive at best. MC is obviously getting great care and is surrounded by immense love. No one can say how long he will be here.
ReplyDeleteI so agree with Melissa. Thinking of you!
ReplyDeleteYour son is a super hero, because he takes after his mommy who is a super hero herself. Keeping you in my thoughts.
ReplyDeleteLeslie
You are extraordinary! Happy seven months to your beautiful twins. Love A&Pxx
ReplyDeleteThank you for this post. It was just what I needed to hear today. Love you so much friend! And I admire you more and more every day.
ReplyDeleteWhatever the outcome whenever that may be, Master Cheeks has certainly touched the hearts of many and he has reminded us all that life is more precious than we know at times.
ReplyDeleteI can't imagine getting a phone call like that. I hope the doctors crystal ball is actually cloudy and MC proves her wrong
ReplyDeleteI am sorry to hear you got that phone call. What an idiot. My parents were given my death sentence twice as a child, but my doctor would never give a time line and always made it clear that they had a plan and everyone should just pray for the best. Decades later, I am still here and have beaten single digit odds twice. You are an amazing mother and my only suggestion to you is to make sure that doctor is permantely removed from your super heros care and is told never to speak to you again!
ReplyDelete**Hugs** Sending prayers of strength your way!
ReplyDeleteYou are amazing, and you are absolutely right. You have two incredible children, and you're focused on the small, simple joys each day with them brings. Happy seven months to your gorgeous kiddos!
ReplyDeleteA superhero indeed. I think that's a very appropriate outfit for his baptism! And in all those pictures, the two of you look so proud and full of love for your babies. I admire you so much. And MC is a fighter. Who knows what will happen next?
ReplyDeleteYour family is truly amazing. You are always in our thoughts and prayers. MC is an amazing little guy who has touched so many people in SO many ways. Sending lots of love and strenght and prayers your way.
ReplyDeleteMiracle babies, Marvelous parents. All four tremendous gifts to this world. All four all about love, and surrounded by a world of love.
ReplyDeleteYou, your husband, Princess, and Superman are an inspiration to us all.
ReplyDeleteThe value you are able to put on things that a lot of us take for granted has always made me envious of you. Your determined mindset to change a situation no matter what the odds has always made me envious of you. Your entire family has already changed the lives of people all over the world, which is something that most people can not say they have ever done. We all get so wrapped up in things that are not important, that we forget to see what is right in front of us. Thank you for reminding some of us who have forgetten that today is a gift. You are in my thoughts and prayers. Happy 7 months to all 4 of you!
ReplyDeleteI have been reading this blog for sometime now and as much as we all dread these conversations ... they happen. But how many times has that Dr. had to call people and while the Dr might feel somewhat connected ( or not) and sad ..They are not the ones that have to live with hearing this. We all know reality is harsh and it will play it's self out the way it will. However, like SKhan my husband was given a "death sentence" by a DR over 7 yrs ago. We were told that he wouldn't make it to Our daughters birth ( 4 months later). He is still here being ornery as ever, and still working on 1 liter to share for both lungs. He uses a Bipap about 20 hrs a day and O2 bled in at night and if he starts to desat. We carry around an Oxymeter he uses a wheelchair and we live life. That Dr. can say whatever it is that she feels in her medical opinion can happen. Because in my family that is just a "practice opinion" because we all know that Dr's are not the ones that make the call. No matter who/what you believe in ... There is no answer until the time comes.... and for your family and everyone involved we hope that that is a far far away time. Love to you all... Autumn and Family.
ReplyDeleteHappy Seven Months babies!!! I love you all and I've never met any of your. You have a beautiful family. Your babes have experiences so much love, so much more than some kids get in a lifetime and for that they are blessed. Bless you all.
ReplyDeleteOh Bernadette, I dont know what to say to you but, I have this feeling MC wil be here a long while. You are right who are they to say he has 3 months, you stay by MC's side and tell him to fight fight to be with his sister, his mommy and daddy. Fight so he can see what a wonderful thing you and your husband has done. I dont beleive in a doctor telling someone how long they can live. a doctor told my aunt she had 6 montsh because of her cancer. she has been cancer free for 3 years and counting. MC will do the ame thing. hang in there you amazing woman
ReplyDeletePrayers for you all. If love could heal, you'd have the healthiest kid in the world....then again, I honestly believe that love does heal...keep strong!
ReplyDeleteWhat a story. You are an inspiration to all of us.
ReplyDeleteI envy you, Bernadette, I really do. Through the hardest times, your hearth keeps shinning for each little member of your family. We do not choose the cards that we will play, but we can make the best that we can with them. The love that you process to your children is a daily reminder that they could not be in any other place than close to your hearth. Kisses. Jose
ReplyDeleteCongrats on your first 7 month babies!! You are both so very cute! And you are both truly blessed having such an amazing Mom and Dad.
ReplyDeleteAll the best!
Kathrin (Germany)
I'm lost for words dear Bernadette. Sending you prayers & strength.
ReplyDeleteYou are such an inspiration!!!
ReplyDeleteHappy 7 months MC & Princess you are looking as cute as ever. Squeezy hugs to you and Duane B, keep doing what you do, you do it so well, its affirmed in all the pictures and the twins smiles, it emanates from your posts, each day is a new day with filled love and memories, may there be many many more for your beautiful family xx
ReplyDeletePrayers for you and your beautiful family.
ReplyDeleteI cannot think of anything to say. The doctor was very insensitive, yes. And you are the most amazing mother MC can have. You are so strong and positive and simply amazing. Big hugs to you.
ReplyDeleteStopping by from ICLW. What a beautiful family you have. Such lucky little beans to have you as there mom. Wishing you all the best!
ReplyDeleteOne brave mumma.
ReplyDeleteYou are amazing
:)
Love to you all
Pen x
Sending you lots of love and peace Bernadette.
ReplyDeleteOh dear, what a distressing call and horrible possibility. The love and attention your beautiful children enjoy from you both, and the love we, who don't know you beyond our Internet 'relationship' feel for your whole family suggests Princess and MC should indeed have a wonderful 7 month celebration. With luck, you can feel our e-support!!
ReplyDeletex Bridg
Happy 7 months to your beautiful babies. Each moment of their lives is truly a celebration. Sending love and good wishes (and a big smack to that doctor) from a huge, huge fan of MC and the Princess- and their mommy, who is quite the superhero herself.
ReplyDeleteHappy 7 month birthday to Hayden and Scarlett!!Looking forward to seeing many more celebratory days,months and years to come.Your right,no one has a magic crystal ball to predict the future.No one has the right to pretend that they do...and how incredibly unprofessional to say so... especially over the phone!!
ReplyDeleteBTW,Hayden's superhero outfit and her princess outfit is sooo perfect and just priceless!!
Thanks for reminding us "not to sweat the small stuff."
xoxo kathy
Truly an inspiration. We are thinking about you and your family
ReplyDeleteHonestly, I don't know if this will help or make things harder, but I thought I would put it out there: there is a movie about a lesbian couple that had a baby through surrogacy who was born 100 days early. It is called "Little Man" and is streaming on netflix. It is hard to watch (heart wrenching), but wonderful at the same time. Both things I have garnered from your posts.
ReplyDeleteFrom pregnancy until well into toddler years the doctors are very pessimistic about the little boys survival. I was afraid to look up an update (movie was made in 2005, Nicholas was born in 2002), but your post made me want to. Against all odds, Nicholas just celebrated his 10th birthday in March. He is special needs and has had many, many surgeries, but his laughter is constant and is a joy to those that surround him.
I have no crystal ball and I hope this post does not bring you any more pain, but only wanted to say that there is always hope. Even when the doctors say differently.
Happy Birthday to MC and Princess. Everyday we have our families is a miracle for all of us. MC has come into all of our lives to remind us of this. Wishing you and Duane much strength during these tough days
ReplyDeleteHappy Birthday to MC and Princess. Everyday we have our families is a miracle for all of us. MC has come into all of our lives to remind us of this. Wishing you and Duane much strength during these tough days
ReplyDeleteI don't know what to say, other than I'm so sorry this conversation happened so bluntly, and thinking of you and your family often.
ReplyDelete-Molly
You are in my thoughts and prayers Bernadette. Thank you for constantly reminding us all of what is really important in life. xx
ReplyDeleteYou are so right - we don't know what tomorrow will bring. What we know is now and we have a choice to do something about now. What will be, will be... but what wonderful memories you are collecting now.
ReplyDeleteHappy 7 months to two very special little people!!
ReplyDeleteThinking of you and Duane at this moment in time lots of love strenght & prayers to you all xxxxx
Master cheeks you are amazing xxx
Happy 7 months to MC and Princess. I can't in no way image what it must have taken to receive that call.What will be will be all you can do is continue to enjoy MC as you are doing.Love and respect as always. xx
ReplyDeleteBernadette, continue to celebrate your babies. MC continues to fight and improve and with the love in your family, I defy any doctor to be able to predict any such outcome. Stay strong...so many people are out there supporting you xxxx mel
ReplyDeleteI'm IP about to embark on SCI route, and came across your blog. I had to read it all.
ReplyDeleteSorry for the latest news, but I hope MC being a man full of surprises, will take a turn and surprise those doc who said those horrible words.
You are a wonderful mum and full of inspiration for all of is. I haven't cried and laughed so much in a long time.
Your story scared me at times, but it also filled me up with strenght and confidence. I wish you and your family all the best. Love and kisses from across the Atlantic.
Bernadette - if my first comment survived please delete one of these.
ReplyDeleteHappy 7 months to you both and your darling children.
One thing that has struck me since MCs journey began are his eyes, he has those deep, timeless, soulful eyes that are so calming and knowing- despite the intensity he has experienced, his soul seems so peaceful and knowing. He takes my breath away.
Warmest wishes from our family to yours.
I'm so sorry. I think if you often. I envy your strength. You inspire me and many others.
ReplyDeleteI envy your ability to put on a happy and brave face each and every day. I envy your grace. Through this grace you will survive anything that comes your way, painful as some moments might be. Wishing you, Duane, and MC and P. much time, much joy, and much peace.
ReplyDeleteK.
I have no words bernadette, please let us know if we can help in any way xo
ReplyDeleteMC and your family are truly a source of inspiration to us all! You handle everything with dignity, grace, and strength. Keep fighting, MC! As always, we are thinking about you and praying for you!
ReplyDeletexxx Hugs and daily celebratory love to you and the family.
ReplyDeleteYou and your family are amazing. My prayers are with you. Your children are blessed to call you Mom and your husband is blessed to have you as a wife.
ReplyDeleteHappy 7 months to these precious babies. Sending you much love and light from our family to yours. Everything about this is so unfair. Your children are blessed to have you both as their parents, just as your blessed by these wonderful children. Thinking of you all everyday.
ReplyDeleteBernadette/Duane..I think about you guys and your beautiful children daily...I admire your strength and your outlook on life...so often we focus on what we don't have instead of what we do have...I am so thankful that I got the chance to meet you, Princess and MC...my life is much richer now because of it...I'm sorry that I can't be there for you to vent to, cry on my shoulder or down a bottle of champagne with...but I can promise you..I do think of you guys frequently and pray for you always...take time to smell the roses and don't sweat the small stuff...take care and God Bless!
ReplyDeleteSending lot's of love to your beautiful family!
ReplyDeleteYou truly are an amazingly strong woman. I am keeping my fingers and toes crossed your little boy proves the doc wrong! xx
ReplyDeleteHayden is indeed a superhero, my thoughts and prayers are with Hayden. What an awful phone call to receive, how can anyone predict the future. Happy 7months to Scarlett and Hayden, god bless them both xx
ReplyDeleteHappy 7 months to Hayden and Scarlett! What a terrible, insensitive phone call to receive--I am so very sorry for that! I'm so glad you are celebrating every day, and everyone else is right: no one but God knows how many days we all have, or what our lives will be like. Twelve years ago, I was diagnosed with a brain tumor after a massive seizure, and was told I would never hear correctly again, walk well (left side was limp following the seizure), regain proper motor control, and that the doctors did not know the extent of my brain damage. You met me: I can walk, talk, hear, and do all the things they said I wouldn't. Prayer work: I believe wholeheartedly in it! I pray for a miracle for Hayden in Jesus' name and for continued strength for your family.
ReplyDeleteJill
wow. Popping over from ICLW and was not expecting to be this moved just by clicking on something. Your children are gorgeous, and you are amazing. Beyond that I have no words.
ReplyDeleteHappy 7 months Hayden and Scarlett!
ReplyDeleteContinue to celebrate their lives and you will be the happier parents because of it. No matter what happens. Sorry for not commenting for a while...but I do think of you guys often. Take care of each other.
Hugs...
Hi from ICLW!!! What cute babies! :) Happy 7 months :)
ReplyDeleteSending lots of love to your beautiful family. Hayden is a superhero.
ReplyDeleteAn ICLW Visit from #2
liddy @ the unfair struggle (mfi, speedskating, life)
Happy 7-month bday to your babies. Each day with them must be a blessing, regards of the ups and downs.
ReplyDeleteWhat a dreadful phonecall. I'm so very sorry. No parent should have to here those words, and that doctor can't predict the future any more than you or I can. Hope, not defeat should always be the starting point, no matter someone's diagnosis. You are a wonderfully strong mom with exactly the right attitude. No one can say for certain what tomorrow will bring, and that goes whether we have healthy children or not. Keep celebrating every moment, because "here and now" is all any of us really have. Happy 7 months to your little miracles!
ReplyDeleteYour strength is beautiful and inspiring. Your children are lucky to have such a fierce, passionate mother. Happy 7 months to your little ones.
ReplyDeleteYears ago, when it was our son, somebody gave me a quote: "Sometimes the thing you fear the most becomes the thing you pray for."
ReplyDeletethank you for this. it was beautiful and awe-inspiring. you and your amazing family are always in my heart, bernadette. <3 <3 <3 happy seven months to your incredible loves.
ReplyDeletemaria