Tag: Treacher Collins

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.

xoxo

eloise

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

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

Do not look forward to what may happen
tomorrow; the same everlasting Father who cares
for you today will take care of you tomorrow and
every day. Either He will shield you from suffering,
or He will give you unfailing strength to bear it.

Be at peace, then. Put aside all anxious thoughts and
imaginations, and say continually: “The Lord is my
strength and my shield. My heart has trusted in Him
and I am helped. He is not only with me but in me,
and I in Him.”

Today I am 32. Wait, what? When did that happen? I was reminiscing with Bo yesterday about what birthdays looked like in my 20’s and how big of a deal our parties used to be for my friends and I. Renting out a bar, a new outfit for sure and then scanning that evite constantly to see who was coming. My how things have changed.  I’m snuggled on the couch early this morning with my new little bundle and the dog is fast asleep next to me. All I want today for myself is to find a new sense of peace and calm in my mind.  I’m determined to resurrect that strength I know I have and others keep telling me exists.

Yesterday after Landon’s tests, I just lost it.  I sobbed several different times. One of those emptying cries that left makeup all over my poor husband’s shirt as he just held me and said “let it out."  I gave myself yesterday afternoon for that. I hadn’t really let anything really go since her birth. There have been tears, of course- baby blues are real after all.  But I had not released all the things I’ve felt as I always catch myself and stuff everything back in.  I felt guilty crying for her- like maybe she’d notice that I was crying for her and get upset herself.  Sounds insane I know- she’s three weeks old. So that was my day and I’m glad I let it happen.  We need to all let go sometimes. Just to feel whatever it is that’s going on with us.  We can then get up "off the mat” and start to feel better, start to feel stronger and face tomorrow. 

So here’s the story… Landon has both conductive and sensory neural hearing loss.  It’s called “mixed hearing loss” and is common with kids with Treacher Collins. Part of what made me so sad is that the hearing/speech treatments or issues she’ll face is only one part of this journey. We still have to analyze the bones in her face. She’ll certainly have a hearing aid for some time and surgery to make her new little ears happens when she’s at least 6.  Any implant comes when she’s about 9.  For the hearing aid they keep saying “you can get different style headbands”- well we love accessories don’t we?  I was never into those girlie headbands for Landon- love them for others but they weren’t my thing. I remember when I first heard of this Bo made a cute little joke with me about attaching humongous bows or flowers to the front just like I’d wanted to avoid. God, I love that man- he keeps me sane and smiling.  And honestly to me … she is perfect and beautiful in every way.

The audiologist will send me a full report today so I don’t want to go into details simply b/c I don’t have them yet.  Thank you for all of you who sent me emails and notes and texts. Your prayers for strength were so comforting and I felt them while we were at the doctor. Little ladybug slept peacefully and we got exactly the reading we needed for the test.

So today, on my birthday, I plan to celebrate being her and Kingsley’s mom and Bo’s wife.  I love them so much my heart feels like it could burst. My sweet husband gave me something sparkly to stare at all day too.  He is more than I could ever ask for in a partner in this journey. I adore him.

Check back for more updates as I get them.  Until then, enjoy your weekends!

xoxo,

eloise

This Thursday is our audiology appointment. Little Landon luckily will just be asleep for this test which can take 2.5 to 3 hours. Not quite sure how it’ll go- what if I can’t quiet her down? What if she doesn’t sleep for that window of time?! She is a newborn after all.

As I sit here and read all I can about hearing aids and what this ABR test can tell us, I have to keep saying to myself- this isn’t life threatening Eloise. She is growing and healthy and a normal baby. I know all of this – and I hear it constantly from others. What pulls me down is just any thought of her pain. Any thought of her struggling to hear; any struggle she may face to speak; any problem she may have with her little cheekbones; and the surgeries… they scare me most. Yes they are advanced medical techniques that have been perfected, they are amazing doctors and these surgeries are far off in the future. But I’m a planner. I plan for things all day long and always have. Staying in my present has always been tough for me.

So that’s my goal – each day- to be present in the moment. To be present when she holds her head on her own for those moments that feel like the longest stretch of time. To be present when I gave her her bath today and she stared up at me the whole time with those huge blue eyes. To enjoy living in the moment of sitting on a bench with her and Kingsley in Central Park watching little kids play softball. My present is truly grand and I’m going to love her as best I can.

Here’s to all of us being present in our lives.

Xoxo

Eloise