se·vere adjective
a: inflicting physical discomfort or hardship b: inflicting pain or distress : grievous <a severe wound>7: requiring great effort : arduous <a severe test> 8: of a great degree
pro·found adjective b: difficult to fathom or understand 2 a: extending far below the surface b: coming from, reaching to, or situated at a depth
I have been tired as of late and otherwise engaged in meetings, appointments, and baseball has begun so practice and games are now a part of life. Larkin’s IEP (Individual Education Plan) was written this week as well. A lot less stressful from the first as everyone now truly understands Larkin and her needs. Her team at school is amazing and they truly want the best for and from Larkin.
Along this journey, I have commented that I hear and read between lines. When doctors say something in passing or in an off-handed gentle manner without going a lot further in explanation, they are ringing a bell. It is a dim sound but I hear it and know it like a dog knows there is a bunny under the deck.
Teachers do the same thing.
This blog allows me to spill what my heart doesn’t want to. I can spill or – how about this – spell out my grief, fear, and then move along with being happy.
I give the definition of severe and profound to help everyone understand what I feel in the pit of my stomach when I hear those 3 words. Larkin has a hardship or grievous wound of a great degree and it is difficult to fathom or understand how far below the surface or at what depth it is situated. And here come the tears.
Seizures have damaged our girl to a degree that we do not yet understand or know. In the past 3 months she has made great strides in her development and since we now have sub-clinical control of the seizures, our hope is that she continues down this path. However, when I write her IEP it is far different from others I hear about or read. The bell is ringing from far away but I hear it.
I watch other children with Down syndrome and I am amazed at their skills. My mother heart yearns for walking, to hear her voice, to have her run into my arms saying “mama” but those skills might come in time. Larkin has begun using her walker in reverse instead of having it in front of her body. She has a lot more control of her speed this way and eventually she will figure out how to steer. The story of Larkin is being written and I anticipate a beautiful outcome.
Slow and steady wins the race as my friend Rae says and she posts on her blog the following: everything is possible… the impossible just takes a little longer
Rae has always understood our journey because she and her son Sam have walked it a tad bit longer than Larkin and I. She has kept me sane through some very dark moments and her friendship means a great deal to me.
I hear the bell but fortunately, it is not the only noise in my life. I can concentrate on laughter, Thirteen talking to his buddies on X-Box live (although that almost drives me over the edge after a while) listening to Larkin babble in her bed in the early morning hours, the birds singing their happy tunes (although that also almost drives me over the edge after a while) and conversations with friends and family.
This morning I went to Mother’s Mass with Chase and as usual I cried through Gentle Woman, quiet light, morning star, so strong and bright, gentle Mother, peaceful dove, teach us wisdom, teach us love.
Slow and steady wins the race, everything is possible…the impossible just takes a little longer.
Seriously- if I was in IL, we would so be having a drink right now. I am with you. You should join the list serv that I started for the NDSC on yahoo… it’s for Down syndrome and complex needs.
E-mail DS-ComplexNeeds-subscribe@yahoogroups.com if you would like to join. There are only a few people on there right now, but I think there may be a parent whose child also has seizures.
Blessings,
Kristen
Yes, everything IS possible dear friend and gentle mother.—Jen
I am sure you have no idea how close I keep you and Larkin to my heart…. I am always so moved and touched by your words and I am honored to call you friend and “sister”.
During some of our darkest times I listened to Natalie Merchant’s song “Wonder” and the last verse still makes me weep every time I hear it…
“I believe
fate smiled and destiny
laughed as she came to my cradle
“know this child will be able”
laughed as she came to my mother
“know this child will not suffer”
laughed as my body she lifted
“know this child will be gifted
with love, with patience
and with faith
she’ll make her way” (of course I change it He’ll make his way…LOL)
slow and steady baby… slow and steady!
hugs
rae
Slow and Steady is right. We love you guys so much and I just know that Larkin is going to do amazing things. I can’t wait to see what God’s plan is for her life… and for yours! 🙂
I just got Kayla’s annual reports and she scores in the less than 1/10th of 1 percentile and her IQ is 45. It sucks. But our kids are so much more than their numbers show!
She has accomplished so much in the past few months … it’s been amazing to watch. And to see your strength and grace through it all.
Rae and most especially Sam, hold a place in my heart that not many,but certainly you,can understand.I found Sam on a cold February day when things seemed far too deep and dark and today, as precious Zoey lies in her crib at CHLA,over a year later,those two verses hang at the bottom of her crib.They are our adopted mantras as well and we too are indebted beyond words because of one courageous boy and his equally courageous mom.Love to you and Larkin and you are never far from our hearts.
I so feel your pain. We have a downs friend that is one month older than Jax, but he is soo much farther ahead than Jax. It makes me so sad for my baby. Seizures are nasty, nasty things. They have kept my baby literally a baby for 3 years. For us its very very slow and steady, it really sucks.
you are amazing
You and your sweet one are always close to our hearts and in our prayers. Everything IS possible, Larkin has taught me that as much as my own lil one, if not a little more….hug that sweet pea from us, ok?
Larkin has amazing strength and she will get where ever she is going, because she has you by her side. You are both always in my heart and in my prayers. I am proud to call you friend.