The day is here. The day I've been waiting so very very VERY impatiently for.
The day 28 months and 23 days in the making.. (But who's keeping track, really??)
Just an ordinary day turned extraordinary.
Ella is walking.
Did you hear me???
I can barely type this I am so excited.
Ella is WALKING!!!
Let me back up a little.. Ella has been doing SO good lately walking between things, walking backwards, stopping on her own, turning around, spinning circles, climbing bunkbed ladders..
basically everything but walking on her own. The past few days I've thought, "Wow! She is SO close.." but I didn't want to say anything because well.. I feel like I'm always saying that. "She's so close guys! She really is! No seriously, this time I mean it.. Any day now!"
Last night she was walking all around the living room and JJ and I were talking about when we could officially declare her 'walking'. I mean.. it's been such a gradual process. Her first steps over 6 months ago, walking between people, walking to an inanimate object, letting go of an object to walk to a person, walking between objects, stopping and starting on her own, and now walking in circles around a room. I still didn't feel like she was truly "walking" though. I told him I thought I could declare it when she started walking from room to room on her own, something she was still timid about last night.
Well, the time has come. This morning as I fished a nerf gun bullet out of the toilet, 3 magnets out of the trash can, and chased Ella through the house to change her diaper, I realized that it's official.
Ella is WALKING!
For something I've thought about and dreamed about for so long and wondered how I'd feel and what I'd say, I am finding myself totally speechless and taken aback. I'm sure I'll have more to say in the coming days as I figure out what this means and how this changes my life. But for now? For now I am going to sit back and enjoy this day and relish every single moment of watching my girl run around the house-no matter what I have to fish out of the toilet.
I have a confession to make: I am a hypocrite. A big fat hypocrite. But I'll get to that in a minute..
Sometimes I wonder how parents in the special needs community view my blog. I mean.. do some feel like I'm not very worthy to declare myself "special" mom enough to write a blog on the trials and blessings that come with this life because we don't deal with a lot of 'extras' that others do? I'm well aware of my many friends to whom the term "special needs" has an entirely different meaning than it possibly does to me. I know many who deal with health issues we don't such as g-tubes, trachs, 24 hour oxygen, O2 sat monitors at night, ongoing medications, specialized therapy tools, frequent illnesses and hospital visits, delays and disabilities more obvious than Ella's, and so on..
Although we have been down that road of hospital visits, NG tubes, and medications before, that hasn't been a huge part of our life lately. The term "special needs" is incredibly broad and covers a huge spectrum of disabilities and I've learned that although one family may deal with certain issues, there are others who deal with entirely different ones unique to their situation. It's hard to compare and I sincerely hope no one judges me on our lack of certain needs because there are definitely other things we do struggle with..
One of the main ones being Ella's anxiety and nervousness in new situations. It may sound petty in the grand scheme of things but it really is something difficult to live with. The only reason Ella isn't walking yet is her fear of falling. She is so anxious around new people (or even many she knows..) that if you're not on her VIP list of 4 total people in this world that can hold her, you better back off. She gets excited to see her bath water running, but screams bloody murder when you set her in it. She refuses to sit in a stroller, cries if she has to ride in a different vehicle than the one she's used to, refuses to be set down, throws a fit if I'm shopping and attempt to try on an outfit (which made finding a dress for an upcoming wedding really fun..), and dramatically clings to me in any kind of new situation. Don't get me wrong, I love my Ella girl to the moon and back and have accepted the way she is. It's just rather inconvenient at times.
Not to mention, watching someone you love so much have this debilitating fear that holds them back from experiencing many simple joys in life is devastating. It's difficult to watch other kids her age participate in activities she would love, and see her holding back. It's heartbreaking to watch her miss out on things I know she would love because she is held captive by her own fear.
And here's where the hypocrite part comes in. See.. I tell my boys all the time that it's okay to have to do hard things. That hard work will pay off in the end. That the accomplishment and pride you will feel at the end of achieving something difficult is far longer lasting than something that comes easily. That, once again, it's okay to do hard things. Yet lately I've found myself discouraged with Ella's lack of progress in certain areas. I felt like we were taking 2 steps backwards instead of the forward direction I so desperately wanted to go. It seemed like her anxiety was getting worse, not better. I was already working hard at speech and sign language and walking and everything else.. I didn't want to have to work hard at another thing. I didn't think it was fair that something so seemingly simple such as sitting in a stroller, swinging outside, or taking a bath should be so darn difficult for us.
Swinging was a particularly touchy subject for me. As long as I've ever had kids, they have LOVED to swing. I can't even estimate how many countless hours I have spent pushing my children in swings. The boys would seriously swing for hours and hours on end during the summer. Before one of them could pump (which was only last summer) I had killer biceps from pushing them both at the same time for such a large portion of my day. And then along came Ella.. When we had our first nice spring-like day a few months ago I thought nothing of walking outside and plopping her in her swing next to her brothers. It seemed like no big deal. I was excited at the prospect of spending many more hours this summer pushing her swing high in the air and listening to her shrieks of joy. (It also possibly had something to do with the fact that I wouldn't be holding her during that time...) But Ella had other plans. Oh, there were shrieks all right. Just not the kind I had anticipated.. These shrieks sounded more like I was doing something horrendous like ripping her tiny little toenails out one by one than something that should seemingly harmless like swinging. Nothing could calm her until I rescued her from that pendulum of doom. I thought maybe her reaction was due to just getting over one of those sicknesses we had so many of this spring. She just wasn't feeling good and wasn't ready. But she would be next time. So when we had another nice day I tried again. Same result. And it was the same every single time I tried to push her in the swing. She wanted to swing, reached for it, but then screamed in terror when I actually put her in it. It's hard to understand what she was so afraid of, but she was. I watched in desperation while she went into hysterics, knowing I couldn't leave her carrying on like that, but wondering how I was going to teach her that swinging is not scary? And since Charlie can't quite pump well enough to swing by himself yet (and I think he enjoys my company..) I would feel obligated to stay and push him for awhile, leaving me to hold my screaming Ella with one arm and push Charlie with the other, leading to many a night spent cuddled with my heat pad after the kids went to bed. And I'll admit it. It also led to many tears. Not all from Ella.
Why wouldn't she just swing? I'd see pictures of other CdLS kiddos swinging and they liked it, so why couldn't Ella? What were we going to do all summer if we couldn't swing? And if I could barely hold Ella and push Charlie now, what would I do 2 months down the road when my stomach is even bigger and I'm even more uncomfortable? It wouldn't be fair to Charlie to just not push him all summer because of his sister's anxiety, but would it be fair to let her scream in her swing while I pushed her brother? It seemed so unfair to everyone. It seemed so hard. And I didn't want to struggle through it. Throughout the past few weeks, we've kept trying to swing, but with quite the begrudging attitude on my part I must say. I kept setting her in it, she would cry, I would get her out, comfort her, and continue with the backbreaking work of pushing Charlie and holding Ella. Over and over again. With seemingly no progress. I felt desperation setting in as I anticipated the long summer ahead.
And then last night. We were outside. I walked to the swing set. Ella reached for her swing. I sighed and sort of rolled my eyes. "Here we go.." I thought as I set her in it. And to my surprise she sat. And she didn't cry. She looked nervous, but she didn't let it overtake her. I pushed, expecting that to be the end, but to my utter shock it wasn't. She held on. She smiled. She laughed. The sound of that laughter brings tears to my eyes as I think about it right now. The most beautiful sound I've ever heard-the sound that washed away the entire past few months of frustration in a single second. She LOVED the swing!!!! I cannot contain my excitement right now. Not only did she do something HUGE by overcoming the fear that has consumed her for so long, but now I don't have to hold her all summer!
I am so so SO proud of her.
A picture of this girl swinging might be cute to some people, but to me it means so incredibly much more.
It means her fear is not in control anymore. It signifies an overcoming of obstacles.
It means we can do hard things. It gives me such hope.
And boys if you're ever reading this.. it means your old mom really does give some pretty good advice.
Today is National Cornelia de Lange Syndrome (CdLS) Awareness Day.
I can't remember when exactly the first time I heard about CdLS Awareness Day was, but it was sometime shortly after Ella was diagnosed. I'm going to be honest.. my thoughts about this day were not positive. I was completely shocked that there even was such a thing as a CdLS Awareness day.. I mean what was there to bring awareness to? It's not like October's Cancer Awareness month where early screenings are promoted to increase health and survival rates. Or the March of Dimes, where prenatal care is emphasized to decrease premature births. I mean, those causes have something that can be done to potentially prevent them. There is nothing to prevent CdLS. Nothing I could have done differently in my pregnancy to change this. There is no cure. No medicines that can make it go away. You don't recover from it. It's something that just happens. Something we learn to live with. So why are we raising awareness?? What for?
The news of this Awareness Day also came at a time where the letters CdLS tasted like vinegar in my mouth. I wanted to spat those sour syllables out and get rid of them as fast as I could, not promote and talk about them more. I didn't even want to talk to my close friends and family about CdLS, why in the world would I want to promote it to people I didn't even know? Why was it their business? CdLS was not something I wanted to brag about. Or show off. It was not high on my life's resume of accomplishments. CdLS was something I wanted to hide from the world, to pretend never happened. CdLS was a menace to my life. Something I never wanted, never asked for, never wished to acknowledge.
Bring more awareness to it? No thanks..
But then I started to learn more. To meet other parents online. And I started to get it. I saw their strength. And I grew from witnessing their acceptance of this thing I wished so badly away. And I was amazed. And humbled. And slowly I began to realize that there just might be more to those 4 little letters than I first thought. That maybe hidden beneath the guise of disappointment and despair were many blessings waiting to abound. And I began to understand why people wanted to raise awareness for CdLS.
Because our children are not a menace. Or a disappointment. Or living a life of despair. Because our kids are just that. Kids. People. Human beings. With the same kinds of wishes, desires and dreams as the rest of us. And the world deserves to know that.
I think one of the main reasons for CdLS Awareness Day (to me at least) is to show the world the many differences that make us all beautiful in our unique way. To bring to light the fact that even though our looks may differ and our ways of communicating may not be the same, we are all part of a much bigger picture. A picture where there are arcs and lines, neat round dots, and splats of messy paint. A picture that combines darkness and light, mounds and divets, and textures of every kind. A picture in which there more colors combining together than you could possibly imagine. A picture that could never be duplicated, for the most breathtaking thing about it is the amazing display of diversity.
Sadly, there are many people in this world who look down on others who look different or act different than them. Raising awareness for CdLS can potentially help our children adjust to this world. Or maybe more importantly.. can help the world adjust to our children. The more people that know about the syndrome and its characteristics, the less rude comments and silent heartbreaking stares families like ours will get when out in public. Raising awareness of this rare syndrome increases acceptance and understanding and helps people understand not only the differences in our kids, yet their amazing potential and determination.
Another point of CdLS Awareness Day is to do just that. Bring awareness. It is estimated that there are thousands of people living with CdLS who are either undiagnosed or misdiagnosed, therefore possibly not receiving many services they need and deserve. Looking back, I suppose we were lucky that it only took us 6 months for Ella to be diagnosed. Some wait much, much longer. CdLS is such a rare syndrome many doctors are not even aware of it, making diagnosis very difficult in some cases. I know for many of the doctors we see, Ella was the first case of CdLS they have ever seen and many have had to research and learn along with us. The hope is that the more educated the public and doctors become, the more diagnosis will be made possible and the quality of life for many will be increased.
I'm so thankful I finally came around to accepting CdLS and it's Awareness Day.
Because the last reason we raise awareness for this syndrome?
Our kids are just too stinkin cute to not have their very own day for us to brag on them!!
Happy CdLS Day Ella! I hope you had a great day of getting absolutely everything you wanted..
Soooooo pretty much like every other day. :)
It's been on my heart for awhile to write a letter to the mother just getting a diagnosis for her child. It was not very long ago that I was one of you and I think and pray for you mothers all the time. Whether you are receiving a diagnosis in utero or after birth, whether you know what that diagnosis even is or if it's just a "something might be going on.." type of thing (been there), there are so many sweet babies that are being diagnosed with diseases and syndromes all over the world and while the emphasis most certainly should be on their care, what happens to the mother during this time? Where does she turn when she is expected to be the one to hold everything together and meet the exceptional needs of so many others? Somewhere along the way, while these these beautifully strong women are so overwhelmed with the caring of their child, becoming experts on medical terms they'd previously never heard of, navigating their way through g-tubes, learning how to care for trachs, handling the ropes of IEPs, IFSPs, therapy teams, and government assistance programs, and learning an entirely new language they never dreamed they would need to know, the needs, the desires of these mothers are being lost. Daily they are giving up on their own hopes and dreams and all the while through their grief, these struggles and pain are pushed aside and covered up. I wish so badly I could be there for you. I wish I could give you a hug, meet you for coffee, hold your hand while you cry and listen to the fears you've never been able to tell anyone before. And after drying those tears, this is what I would say.
Dear Mother Just Getting A Diagnosis,
I know you are scared. I know you are angry. I know you are hurting. And my heart breaks for you. Not because of your child and the way he or she is. No no.. definitely not because of your beautiful child. Your perfectly created, unique child who the world may define under the label of a 'syndrome' or 'genetic defect' but who you and I know is wonderfully created. No, mother. My heart breaks for you because I know. I know what you are feeling right now. I know because your heart is my heart. We have never met, yet we have shared so much. We have shared the same love for our children. The same joy and anticipation of their arrival. The same hopes and dreams. Yet we have also shared the same heartache. The same fear. The same crumbling of everything you ever thought was to be that is now not. I know.
I know you feel like your heart is shattering into a million microscopic pieces and being spread to the farthest corners of the earth, and for that mine does too. Because while I know it's part of the journey we share, and part of the healing process we must go through, I wish I could save you from it.
I know you are angry. Oh, how I know that. I know you don't think this is fair. That you don't deserve it. That you didn't do anything wrong to have to suffer with this consequence when all over the world women are doing drugs and abusing their bodies and not even wanting or caring for their children, yet having wonderfully healthy babies and you didn't do that so why are you being punished? I know.
I know you don't want to talk about it. I know you don't know what to say to family and friends. I know you don't know how to explain what is going on and how you are feeling. How could you possibly know that? You are on completely unchartered territory. Somewhere you never dreamed you'd find yourself. I know you secretly hate it when people tell you, "I'm sure everything will be okay." and "God only gives special children to special parents" or "People with special needs are such a blessing." I know you want to scream and yell that "NO! Everything is NOT okay. I am NOT any more specially equipped to handle this job and this is NOT a blessing." Yet I know you smile at those well-intentioned people and respond with a quiet "Thank you" and nod your head and try your best to keep it all together and put on a strong front. Until you are alone. And you can finally give in to the isolating feelings of hopelessness and despair. I know.
I know your heartache and I feel you pain, but there are so many things I wish I could tell you right now.
I wish I could tell you all the wonderful places this journey that you never signed up for will take you on. I wish I could tell you the immense joy your child will bring you. I wish I could tell you how he or she will become a bigger blessing then you ever imagined. I wish I could show you all the amazing people they will bring into your life that you wouldn't have known without them. I wish I could show you how inspiring they will be. But I can't. Because I know you wouldn't believe me. How do I know that? Because once upon a time.. I wouldn't have believed me either.
I know this is your individual journey to travel with your own unique twists and turns along the way, your own mountains to climb and valleys to walk through. I know our paths will look different. I know I can't travel it for you, but I can try to ease the burden, to lighten your load, by walking beside you. I know you are just starting on this road and the trees around you look dark and frightening. They seem to stretch on forever and I know you wonder if the sky will ever ever brighten again? I know it feels like it won't. I know you think you'll never get there. I know you think the fog will never lift. That life will never be fun and light hearted again. I know you feel a shadow on your heart that you believe will never go away. I know.
I know this is not the life you planned.
But let me tell you..
This life is better than what you planned. Because of the Someone who did plan it.
This life with change you, mold you, teach you, strengthen you. This life will humble you and sustain you. This life will open your eyes to see the true goodness in people and you will find beauty where you never thought to look before.
Is it easy? Not quite. Nothing worthwhile ever was. Will you have hard days? Absolutely. Will you still have days where you feel like the weight of the world is upon you and you just cannot possibly go on? Where the pressures and battles seem like too much to take on? You will. And on those days.. give in. Let yourself cry. Let yourself grieve the "should have been" possibilities. You are not expected to be perfect.
You will have moments of physical exhaustion when caring for a child with special needs is too much for your body to handle. Moments of mental exhaustion when the list of phone calls to insurance companies, hospital billing agencies, supply companies and such seems endless. Moments of emotional exhaustion when you cannot stop yourself from worrying about the future. And whether or not your child will walk. Or talk. Or attend a normal school. Or have friends. Or live a long life. Moments when you worry how this will affect your other children. Your family. Your home. Your dreams. Your everything.
You will have those moments. But then you will come back. Because you are strong. Because you can do this. Because there is a remarkable child waiting, just waiting for you to discover how truly incredible they are. A child who desperately needs you. Who needs you to love them. And hug them. And tell them they're beautiful. Who needs you to hold them while they experience the wind blowing in their face, who needs you to teach them that it's okay to be splashed with water, and that grass tickles beneath their feet. Who wants to blow bubbles with you and hold your hand and experience the simple joys of this world. A child who wants to enjoy life. With you. Their mother. Without being worried about IEP's or IFSP's or special classes. Without stress from phone calls to insurance companies and supply companies. Your child deserves you. And your immesurable love.
Is this how you envisioned your life when you were a little girl dreaming of your fairy tale happily ever after? Probably not. Me either. Wherever this journey leads you, please remember.. You are not alone. Just keep stepping forward, one foot at a time. You can do this. And you will. You are stronger than you think.