Friday, December 7, 2012

On Being A Mom in the World of Ten

This past weekend, noting that MC's status had declined significantly, I asked our hospice director just how sick she thought he was. On a scale of 1 to 10, she said, he's about an 8 or 9. 


I expected this answer, it being consistent with what I would have responded had someone posed the same question to me. The grave assessment, however, left me no more concerned about MC's health than I have been for the past 8  months. You see, the fascinating thing about MC is that he has managed to live his entire life as an 8 or 9.

Until 3:42 a.m. Monday morning... when he entered the World of Ten.

At that time, he had exhausted all available respiratory support options on hand at his Home, and the next step would be to transfer him to the PICU for ventilatory support.

I had already decided previously that when we got to this point, I did not want MC existing sedated on a ventilator... as his condition predicts that he would never come off.

It is, however, one thing to make such decisions hypothetically, and another to make them in the moment.

Duane arrived shortly, and ultimately, we decided that we would not take MC back to the hospital. We would begin to live in the World of Ten.

For a while now, I have had a vision of what I wanted for MC when we arrived in the World of Ten.

Everyone who meets MC remarks on his spirit. A baby buddha, a magical child, a wise old soul-- these are just some of the descriptions I've heard from others.


But this remarkable spirit, it struggles to exist parallel to total chaos and confusion.-- constant seizures, uncontrollable convulsions, labored breathing-- it is often exhausting just watching MC be.

As I was reflecting on who MC is, and what I wanted for him when we arrived, I realized, incredibly, that MC is India. A tranquil spirit amidst tangible turmoil.

At this point in time, my only wish for my Indian spirited child is that he find peace. 


On the surface, it might appear that this decision would be in direct contradiction with what I want for myself. After all, peace for MC means choosing drugs that will sedate him, rather than allow him to interact; positioning him so that he can breathe easier, rather than cuddle him in my arms; allowing him to remain in his Home, rather than exhaust every possible medical intervention.

But in fact, MC has given me the greatest gift ever.

For the longest time, I struggled with not feeling like a mom. I had always anticipated that once my babies were born, I would recoup those lost surrogacy feelings by engaging in playgroup/babycenter/SAHM overdrive.

In fact, these past eight months have been unlike anything I  ever imagined, and I have to come to realize that all those little things that I thought would make me a mom, didn't really matter at all.

Ever since Monday, when I began living with the knowledge that my son will die, I have FELT it with every decision that I've made. I have FELT that I am A Mom.

Because making selfless decisions irrespective of my own feelings so that my child can know peace, THAT is what it means to truly be A Mom.

Thank you, MC, for teaching me this. Thank you for making me A Mom.



58 comments:

  1. that's exactly right... it is amazing the loving relationship that exists between baby and momma.

    thinking of you, and your gorgeous boy with the most fantastic cheeks.

    cherish every second. give him all of your love- the time is now.

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    1. Isn't it glorious how those cheeks fold over his mouth when he is laying on his side? Thank you for noticing his most beautiful asset:)

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  2. That is the secret of true motherhood, and it is a forever fact.
    Thank you for sharing your love and children with so many around the world.
    Prayers and love constantly.
    O.C. Grandmother

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    1. And thank you for sharing beautiful comments and supporting us along the way.

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  3. Thank you, MC, for making the world a better place. For touching thousands of people with your story. You have made me a better Mom.

    Bernadette, I wish you all the strength in the world as you travel this path that few of us could ever imagine. You are such an amazing woman. Thank you for sharing your amazing son (and your amazing family!) with us.

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    1. Emily, your kids have done the same for me. Scarlett is, of course, sick too, and I was thinking of the time your kids were sick-- in different hospitals-- and the strength you exhibited during that time. You are my inspiration.

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  4. TONS of prayers for little MC and your entire family. That picture of you and him is absolutely adorable and heartwarming!

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  5. Beautiful words that made me cry. You have learnt more about motherhood than I imagine some mothers ever learn. You're wonderful x

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  6. A long time lurker here, your post brought tears to my eyes. May God continue to guide you with his grace, to help you guide MC to a place of calm and comfort and love. You are an amazing women who will always be "mom" to an amazing little boy.

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  7. "Life is like school, and some of us graduate sooner than others." Godspeed, little one, you have learned (and taught) your lessons well.

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  8. Bernadette, you are an *amazing* mom! I wish it could've been different, that you could've grown to feel like a mom through playgroups like you'd originally thought. But the love you feel for MC, the decisions you make continually in his interests and in those of your family as a whole, really show through all of these posts. I am glad you are feeling like a mom, because you certainly are one.

    And I know you love those cheeks, but that hair? It just cracks me up!

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  9. Your strength as a mother is, just - so incredible. MC is a lucky little boy to be loved so much by such a wonderful mommy...

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  10. So many prayers coming to you and your family.

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  11. I cried reading this. You're not just a mom, but an amazing one who has ensured that every minute of MC's life so far has been filled with love, and will continue to be filled with nothing but love. Wishing you, MC and the whole family so much peace and love during this next step in your journey.

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  12. I dont know what telling more than above .... I think you canot be a better mum than now. Your love is so 'right'... Thank you Bernadette to share your life with you, thank you to teach us. Will pray for you and familly tonight !

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  13. I just LOVE that dandelion hair!!! My heart breaks for your family and your story, but i am so inspired.

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  14. Your last picture in this post haunts me as such an iconic picture of both mother love and the complete love and faith of an infant/child for their parent. The best beloveds who are with us always time without end.
    All around the world parents are looking at their children and seeing those they love and still have, those they lost and still love, those they hope will come, and thinking of you, Scarlett, Duane and Mr. Cheeks hoping for peace and holding the faith and love seen in MC's eyes as he looks at you.
    loves........ old ca grandmother

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  15. You are an amazing mom. You have been from day one.

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  16. You are an incredible mother and through your sharing have given us all so much of yourself and family. You inspire with your strength and courage. May your beautiful MC find his peace, as well peace to come to you, Duane and Scarlett. Sending you much love.

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  17. Bless you little man. You are a remarkable soul.

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  18. sending real love across the virtual world

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  19. My thoughts are with you, your family, and MC.

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  20. And I second what Deborah says.... I do love his cheeks, but his hair is what always gets me! In such perfect contrast with his very contemplative and steady expressions. What a great looking guy!

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  21. You are a beautiful woman, Bernadette. Your courage and strength astounds me. Your insight enlightens me.

    Sending love and hugs to you and your family.

    MC is so lucky to have you as his mum. No-one could have done it better.

    xxx Zee

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  22. Bernadette i agree with the lady above you are the most amazing mom and i have to say that MC is the most amazing son he is just a handsome chap that speaks volumes with his face just wonderful!!
    I think of you and your family most days and read your blog and end up crying just know that we are here thinking of you!!!
    Lots of love to you all and a big big hug to MC with the most amazing cheeks,eyes and hairxxxxxxxx

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  23. Bernadette, I am Corrie Tate's mom and have followed you here and through Corrie. My heart has been with you through this and my support from afar stays with you now. You truly know the meaning of being a mother and what is important.MC and Princess are so lucky to have the parents that they have. You are one special mother and lady. Love to you all as you continue your journey. Margot Clauss

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  24. And an amazing mom you are. Blessings to you and your family. MC is so lucky to have you as his mommy. Peace for you all.
    kd

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  25. These words and decisions are just so so loving, beautiful and brave. That's exactly what being a mom is, i think. I read your lines and cry at the same time as I smile because I'm so incredibly happy that you are so very ethically right in your actions and thoughts. I wish you and your family tons of strength and gallons of wonderful red air of LOVE. You and MC are in my thoughts every day, many times!

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  26. I have not cried through one single blog that you have written but today that ended. I wish there was a someway to stop what will come and create a miracle cure for MC - thoughts I am sure you have every day. He is a precious miracle - a small angel that came into this world to bring something special to each person that has read his story. MC is lucky to have you as a Mom - you have circled the globe, lived in a foreign country, spent countless hours next to hospital beds and loved this tiny soul to the depth of your being. He has taught you what it means to be a mom - but you have showed him something just as extraordinary - what it means to be loved. Thinking of you - Joann

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  27. Love and hugs from across the world again today.
    Moved to tears again by your selfless love for MC and by your journey to where you are today.
    You are not just a Mum, you are MC and Princesses Mum and they are lucky beyond measure.
    x Bridg

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  28. I so wish that there had been another way for you to feel like a mom. At the same time, that feels like wishing for something other than the children that you have, which of course isn't what I wish at all. I guess I just wish for a miracle.

    You are a really beautiful human being and mother and an amazing writer. Thank you for sharing your beautiful boy's life with us.

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  29. Your an amazing mom B, don’t ever think otherwise, if could write a caption bubble on the last picture above, it would from Master ChEEks saying "MOOOM" he’s just got that cheeky look about him, sending you all huge hugs of strength xx

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  30. Oh Bern....there is not a more difficult job than being a mother yet it is the most rewarding...read your blog...you are a mom....you have been a mom throughout this whole surrogacy experience...just deciding to use a surrogate and/or egg donor is just one of many mommy decisions you made early on....a mother is willing to do anything for her children...and you have shown that from the beginning... you are such a blessing and inspiration...God Bless you and your family......take care...

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  31. my dear bernadette. your life is a teaching for all of us. once again, both childs are lucky to have you as a mum. are lucky to have a mum who goes till the end for their peace and happines.

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  32. Delurking...I check on this site every day hoping for a miracle for your family, and now I realize you guys are the miracle. Your abiding love and strength through all these obstacles is so incredible. MC has touched so many hearts in his tender age because your family continues to show us the boundless limits of the love between mother and child. You guys are beautiful. Thank you for sharing your strength!

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  33. Peace is always beautiful, and so are you, mommy. We are all thinking of you, Duane, Scarlett, and of course MC, prince of all things India.

    K.

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  34. Holding you and your family in the Light. Love like yours is what makes us human.

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  35. MCs has made me a better father as he has made you and Duane better parents. Thank you, Bernadette, for sharing and bearing your soul for all of us to learn to be better people. You and your family are always in my thoughts. Hug that little guy for us. He's the cutest, most cheeky little man ever. Lots of love to you...

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  36. Praying for strength for you and your family during this time. You are the best kind of Mama there is! And those have got to be the best cheeks a kiddo ever had. He is so beautiful.

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  37. Thank you so much for taking the time to post your helpful info on my blog about Hayden's Nissen/G-tube, especially now knowing all you have happening this week! I have an excuse now to buy more shirt and pants sets despite the fact she has enough clothes for quadruplets! I check everyday for a new post about your family and had a worried feeling this week as I waited to hear. I admire your strength and am often moved to tears by the eloquence of your writing about such a painful situation. It has made me stronger with what we are going through, and reminds me daily to see past the situation and find beautiful moments and be grateful for the lessons our children are teaching us. If anyone can make the best decisions for him and ease him through this transition where he will be freed from his shell, it is you. Letting go of him in steps is so selfless, because I know how hard it is not to be able to hold your child and have them aware of your comforting presence. It does take a while to realize the fantasy we have of what it would mean to be a mother is so far from our reality of it, but instead we experience something so much greater.

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  38. Oh Bernadette, tears are pouring down my face as I write this. Your words are so beautiful and touching. I can't even begin to fathom what you must be going through. Your strength is remarkable. May peace be with all of you.

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  39. Dear Bernadette, firstly thank you for sharing your story and inner most feelings at this very difficult time. No parent should ever have to watch their child suffer and no child should ever have to suffer, MC is a very special boy who clearly adores his mummy, just look at his eyes in the last picture. We so admire you and Duane for the incredible parents you are. Sending all our love.

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  40. Dear Master Cheeks-

    Thank you, sweet boy, for letting us cheer you on in your journey. Thank you for letting us smile at your adorable pictures, celebrate your good days, celebrate your being here. I am crying with your mommy and daddy, but also so very grateful that the world has gotten a chance to meet you. I hope you have spent the last few days surrounded by peace- I know you've spent them embraced in indescribable love. A fan in New York is thinking of you and your wonderful family.

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  41. Thank you for sharing this...it was a wonderful post. I think you are a beautiful family and you're an amazing mother. You're all in my thought as you navigate these days of "10." Peace to you all.

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  42. You are an amazing mommy to Hayden and Scarlett! We are all inspired by your selflessness and strength. My thoughts and prayers are with you and Hayden.

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  43. One of the hardest things about being a mom is learning to let go. I say, you've got the mom thing down. Hoping every moment in the land of 10 is just what it should be and peace will come to MC when it is time. He is beautiful.

    Leslie

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  44. MC is so lucky for having such amazing parents. Thanks for being as you are, you have touch our souls in a indescriptible way.

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  45. Bernadette you define the word Mum. MC and Princess are lucky to have you. So much love for your family is so beautiful too see

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  46. I thought about your family a lot today. I took you with me as I traveled through another hectic day, grateful for the reasons it was hectic. Your family is the purest embodiment of love, perseverance, and strength. I wish nobody ever had to have a sick kid. It sucks and is unfair.
    All our love to you and to the little man with those amazingly puffy little cheeks!

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  47. I have been lurking for awhile, celebrating and mourning with every up and down. I want you to know you have taught me so much about what it means to be a mother and handle life with grace.

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  48. Whether for a short or long time, the time being a parent, a child, and a family is a blessing. You are truly an inspiration.

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  49. i would at least consider a trach..he could still have a meaningful life!! there are tons of groups on facebook for medically complex kids and their parents, and for special needs moms..give it a chance!!! dont give up so easily!!!

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  50. A mom truly!
    Praying for the four of you!

    Kathrin (Germany)

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  51. This is so true. From the moment we even begin to try to have children, whether naturally, ivf, surrogacy or adoption we have to put the bubba first and ourselves second. For you to find yourself in this situation to such a degree and to be so dignified about it is a true credit to you as a mum.

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  52. You are a wonderful mom, and an inspiration of courage. Bless you all...

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  53. You are an amazing woman for showing unconditional love. I think MC loves you back in the same way.
    We send our thoughts and blessings to you and your family.

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  54. OMG i love MC so very much. MC has the best MOM in the world xx
    Bless his young heart forever xx
    Pen x

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