The other day in the hospital I witnessed a mother pushing her small, bald child in a wheelchair while she chatted and laughed with another woman. I thought to myself "How can she be happy?" I sat there in a hospital room, day after day, watching my son go through pain, pokes, prods, and an overwhelming sense of despair set into me. I literally felt like our life stopped.
Life did not stop. Life just changed. Our life will never be the same...and this is not a life that I would have chosen, but it is what we have been dealt. It's time to find our new normal and get back to living.
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Elizabeth...this is beautiful and I am so proud that you are taking this as instride as you can. Yes..this is not a chosen journey. But you can find joy,laughter and hope on it. Blessings and hugs from Kansas !!Kristy (Eggfarmgirl )
ReplyDeleteThis makes so much sense, Beth. Very wise! You're doing great living with the hand you've been dealt, I admire you!
ReplyDeleteI believe many of us arrive in Holland! There are only two choices in that; to become bitter or become better. I am so glad that you are choosing the better. Sending you prayers, much love, many blessings, and a bunch of hugs.
ReplyDeleteAhhh Holland - I was given that poem when my son was diagnosed with Noonan Syndrome when he was 10 months old. I remember reading it over and over.
ReplyDeleteOne day at a time Elizabeth, it will help you to do it that way.
Prayers have been constant.
Kim in VA
That was beautiful, Elizabeth. :) You are in our thoughts!
ReplyDeleteI've just stumbled upon your heartbreak, and promise to pray for your family - especially your son. My son has been in remission for 9 years. Hoping your little boy receives all the miracles Trey did and more. Blessings
ReplyDeleteI know I already said this on blog frog but that was before I read Jacob's story. What a sweet and brave little boy. Prayers on top of prayers for you and your family.
ReplyDeleteThank you for this. My thoughts and prayers are with you and your family.
ReplyDeleteI too have stumbled across your heartbreak. Thoughts and healing prayers are with you and your family.
ReplyDeleteI just caught your thread on Blogfrog. Saying a prayer for your precious little boy...
ReplyDeleteElizabeth I just happened to see your post in McMama and I just want you to know that I am praying, meditating and sending healing energy your way ~ and expect a miracle ~ they do happen ~ hugs and namaste, cz:)
ReplyDeleteI saw your post at Blog Frog and wanted to stop by to follow your blog so that I will be able to keep up-to-date on how your family is doing. My prayers are with you!
ReplyDeleteHugs,
Cara (a fellow homeschooling Mommy blogger)
I have a page on my blog dedicated to prayer blogs. I just added your blog button with a special comment. If even one additional prayer for your son results from it, it will be a blessing!
ReplyDeleteWe are in Holland too, I just stumbled across your blog and I feel so much for you as we have been walking a similar road. As I pray for my son I will pray for your Jacob too. Hang in there ... there is hope and joy. I sometimes feel a little guilty or in denial when I laugh and we are having a good time. There are moments that are very hard, but there is still so much to rejoice in. My little guy is 5 too and was diagnosed at 4 his was a cancerous brain tumor and he is much changed from surgery and I find I walk a fine line between mourning what was and rejoicing that he is here. I will pray for you as you navigate Holland!!
ReplyDeletePraying for you all!
ReplyDeleteElizabeth, thank you for sharing this. It is amazing and I am praying for your precious blessing and for your family.
ReplyDelete(((((((hugs))))))
ReplyDeleteSending you ALL faith, grace, and strength in this journey through "Holland". I was there when my husband went through cancer diagnosis and treatment. And now again, with completely different circumstances, we are in such a foriegn land again as my kiddos' diagnosed with a mental illness and is undergoing blood draws, chemical treatments, physical and psychological pain, and with or without treatment we worry about the risk of loosing our child.
I AM PRAYING and PRAYING for your dear little boy!