Tag: motherhood

Welcome to Holland

In our parent/child group therapy session this morning, our wonderful leaders gave us this passage to read. This resulted in 5 mothers crying over our little wonders…over our own trips to Holland. It’s an incredible thing to be gifted with a child with special needs. I probably would have felt like some sort of tiger mother even if she didn’t have these needs, but I sincerely feel like I’m a different person. Forever changed. If we are blessed in the future with another child, I will be stronger and more vigilante b/c of our amazing journey with Landon. I can’t imagine it any other way.

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.“

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It should be a good day

I mean she got her hearing aid today. I sang to her and played with her all the while knowing she could hear me. So why am I sitting here crying? Why am I sad?  I guess the start of the day has a little to do with it.  The ophthalmologist appointment felt like a formality honestly. I wasn’t expecting another diagnosis. I wasn’t expecting this man who I waited to see for an hour and a half to turn around in his swivel chair and say to his resident “she has strabismus."  Um whaaaat? I had to ask him to spell it twice. Strabismus is essentially lazy eye. It might correct itself, it might not. It might mean yet another surgery. I notice it very rarely, but I have noticed it. I thought it was just another thing that all infants do considering they don’t focus on anything for their first month or so.  These days of specialists that are all focused on her diagnoses get to me by day’s end.  It’s just frustrating that her life will be filled with doctors and facing diagnoses. So frustrating.  When my mother and Bo ask me why I’m sad, I honestly can’t give a clear answer.  My only answer I can drum up is "because I’m her mother.” I feel these things more deeply. I cry b/c she doesn’t know enough to cry. Because she’s poked and prodded. I cry because I’m her mother.

I’m also crying b/c of the whole nanny vs daycare thought process and money that goes into both. I cry b/c I won’t be taking her to Clarke come the New Year if we can even figure out how to afford a nanny to get her to Clarke. It’s not the  normal tears of a going-back-to-work mother. I’m a mom of a child with special needs. I know those needs better than anyone on this planet now. I want to take care of her myself. 

Anyway, enough of my pity party. She looks so precious in her softband- it’s light pink and looks so cute on her. I’ll post pictures soon.  Good things of today- the buses came around regularly, we always got a seat, she drank her bottle quietly and entirely in the waiting room, we were on time everywhere (shocking) and home before the snow got really bad.  All in all, no true reason to cry.

In fact, I think it’s time to pull myself together now.

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Update on little bug

Here is an update on the bug since so many have kindly asked. We have two big appointments this coming week- one with ophthalmology on Wednesday and then our big cranio-facial team clinic on Thursday.  The ophthalmologist we have to see again b/c her hearing loss is mixed with “sensory neural” and they ask that you make sure the nerves in her eyes are not also affected. We need to find a new ENT….long story I’ll write about later (grr). We are also hopefully getting her baha hearing aid this week. Big week. The clinic on Thursday already has me fighting my own anxiety. It’s supposed to be chaotic and challenging, but will hopefully or possibly give us a road map to what she’ll face in her young life. A plan. So my heart is full of expectations and trepidation as we anticipate this plan. As a self proclaimed planner….you can imagine why.

Then there is the genetic testing. I don’t think I mentioned this earlier, but we had her genetically tested to find out if her Treacher Collins was passed by one of our genes or if it was a genetic mutation.  When I mentioned the phrase “genetic mutation” to one of our friends he said “well I don’t think it’s fair to say that."  It’s not a derogatory thing to say- actually it’s just a technical term for TCS- the gene is either from a parent or mutated on it’s own. Finding this out will tell us our story for future children… for her future children too.  We are waiting on those tests from the one of two hospitals that does this test so who knows when we’ll get it. I mean…they read genes for goodness sakes. Sounds hard. It’s also hard to wait. When Bo and I discuss if it’ll matter to us if it came from our genes, we say no, but I’m not sure that’s true. I know that if it’s from his side I will not care. But if it’s from mine……I will. Just being honest….. I will totally care. I cannot explain exactly why but it’s there.

Little bug has happily (hurray) been gaining weight. Double hurray. Not completely enough as what the doctor wanted but enough means enough for momma. Her newborn clothes are finally snug. She’s gaining strength in her neck and certainly her lungs :).  I cannot wait for her hearing aid so she can hear our voices clearly. How magical to know that she’ll be hearing my voice when I tell her that I love her.  Hurray.

Back to celebrating small moments with the bug. She’s as hungry as ever and sucking on her pacifier as if milk will come out of it. Time for a meal!

xo

Eloise

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Becoming Real

I’ve picked up this old book that my mom gave me, and then my sister also gave me, “Simple Abundance: A Daybook of Comfort and Joy” by Sarah Ban Breathnach.  If you don’t have it… buy it.  It’s a lovely book with a passage for each day – a lesson or a fable of sorts and I find it useful to read it early in the morning when it’s just Landon and I in the quiet living room before the world has woken up. 

November 3rd’s lesson is from the Velveteen Rabbit. I hadn’t thought of that story in ages but come to remember that the rabbit wanted more than anything to become real. The old horse in the nursery where the rabbit lived told him that becoming real doesn’t happen overnight to toys or people. “Real isn’t how you are made. It’s a thing that happens to you. When a child loves you for a long, long time not just to play with but REALLY loves you, then you become real. Generally by the time you are real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are real, you can’t be ugly, except to people that don’t understand.”

In order for toys to become real they must be loved by a child. In order for us to be real we must become lovers of ourselves, our lives in all of their complexities.  I struggle with self confidence quite a bit.  For someone who was confident and secure growing up even in high school when most are not, it seems to have deteriorated some over time. I am not sure how or why but it’s something I have to work on all the time.  It’s easy to let our confidence wane. To forget what makes us real.  Forget what makes us our authentic selves.  It can be physical appearance, family, money, loneliness…  we allow ourselves to let the outside world and others influence our confidence and how authentic we feel.  I love the story of the velveteen rabbit also to think of the love of a child making us real.  I feel more defined than ever by being Landon’s mom. To say “this is my daughter” makes me feel so special. To define myself now as her mother… it feels amazing.

As you learn to acknowledge, accept, and appreciate what it is that makes you different than all the other toys in the cupboard, the process begins.  As you learn to trust the wisdom of your heart and make creative choices based on what you know is right for you, process becomes progress.  As you learn to endow even the smallest moment of each day with love, progress becomes reality perfected. You become not only real to those who know and love you, but real to everyone. You become authentic.

Here’s to finding and remembering our authentic selves.

xoxo

eloise

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Early Intervention

Our Early Intervention program has become our new life but it actually has multiple meanings for me.  The program can be taken literally- we have services intervening early in her life to work with her on her hearing and speech.  It has also been an intervention for me as well.  Through NY Presbyterian we were introduced to The Clarke School- an early intervention program and preschool for children who are deaf and hard of hearing. My intervention was for my sanity and emotional state. Granted, I’ve cried again like 4x today but honestly I do feel better. 

My emotional early intervention began when I met our services coordinator. She is the most soothing, loving, nurturing person I have ever met.  After 10 minutes with her I realized that she is in our lives for a reason.  She joined the Clarke team b/c her daughter has sensory neural hearing loss and attended the school.  So instantly I had a friend in this journey that had experienced something like I was. She had stayed up nights struggling to come to grips with the fears and challenges her daughter faced. She struggled with breastfeeding and waiting rooms, and tests and doctors.  She gets me.  Being introduced to the rest of the team and being in that space gave me peace.  The speech therapists, the receptionist, the group leaders, the director – all of them are kind, loving, understanding, problem solvers.  In just a short week I feel like I have a clear path for her hearing and speech. I have a team of advocates for Landon now.  A team of cheerleaders who were so happy to meet her and knew all about her before we’d even met.  I love these people. 

For our little girl, Early Intervention means speech therapy twice a week and parent/child therapy once a week.  It’s a lot of work for a teeny little baby but I’m learning how to interact with her, songs to sing, sounds to make, toys to buy. Being there makes me feel whole.  So I will go as many times as they will have me.

Her hearing aid is also ordered and expedited – which is simply incredible as it was going to take a long time but Clarke just makes shit happen. They have special powers I’m convinced.  This morning we did our first therapy session and parent/child group session.  I met other mothers who have faced similar struggles and babies with their little baha hearing aids and softbands.  Precious little one year olds who are making sounds and talking some and loving life completely.  The room gave me hope and strength. It gave me resolve.  On 3.5 hours of sleep, I didn’t feel tired while I was in there. 

I’d never heard of early intervention, but somehow and some day I will give back to other mothers via early intervention.  It’s changed everything.  I am so grateful.

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xoxo

eloise

Clarke was literally founded in 1867.  How fascinating is that? 

Eloise ThomeLeave a comment

Giving Thanks

In 6 long weeks, as we’ve begun our journey with Landon and her TCS, I have been touched and moved to tears by the outpouring of love, prayer and support from our friends and family. It’s been the most moving and inspirational outpouring I could have ever imagined.  Thank you.  Thank you for the time you have all spent emailing me and sharing your own stories of adversity, stories of hearing loss in your families or simply to say hello after many years.  I want to write everyone back but it’s taking me some time b/c we’ve received about 200 messages. We’re on the prayer list at about 5 churches, and we are still getting amazing gifts in the mail from folks we’ve never even met.

What has been so special is that the emails and hand written letters have come from every facet of my 32 years.  People from my days of childhood, to middle and high school to college, New York years to people I haven’t actually met yet.  I’m driven to tears (in a good way) each time I read your notes. One amazing friend from college, who I haven’t seen in 10 years, sent me an enormous box of baby clothes that her girls had outgrown.  I literally cried more and more as I pulled out the beautiful pieces as I was so moved by her kindness.  I have always felt blessed to have good friends and support in my life, but now it’s taken on a new chapter. It’s reunited me with friends that I’d lost touch with but now it seems no time has passed. Even when folks don’t know what to say… just saying that and that you’re thinking of us is amazing.  Thank you.  I feel incredibly lucky to have met and known such special people over the course of my life. 

I really do not want to sound preachy but it’s also reunited me with my faith.  Bo and I met at youth group as kids, but that’s not to say we have been the best all our lives at getting to church or thanking God enough for our blessings along the way. Turning to faith is a natural thing when the going gets tough.  For me it was a breakthrough when I was still in the hospital and I hadn’t gotten to see Landon but one time in a drug-induced haze. It had been two whole days and I hadn’t been able to see my baby girl b/c I was stuck in bed and she was down in the NICU. A chaplain checks in on the mothers regularly in my section of recovery b/c our “wing” is where all the NICU moms recover.  This lovely woman came in and I instantly sat up and asked everyone visiting to leave Bo and I with her.  She sat with us and asked us questions like “what did our faith mean to us” and “what did we want to pray for”.  Instantly an outpouring of emotion filled the room. We cried as we answered her that we wanted answers, to hold her, to love her and find peace and for God to give us strength.  This one 30 minute meeting with this stranger was all I needed to within a few hours, get up, walk for the first time on my own and make it downstairs to see Landon to feed her for the first time.  I have no doubt that God was with us in that room.  I’ve never felt his presence so profoundly before.

So this is little old me giving thanks to all of you near and far for your love and compassion as we make our way in this confusing journey. Yeah.. it’s on the internet but it really is heartfelt :).

We love you,

xoxo,

Eloise

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