Many years ago when Elle was a little over two years old and Tess was an infant, I cried silent tears in the dark as my babies were falling asleep next to me. My husband was busy with work and frequently coming home late, and I had no one to talk to about the depth of my sadness.
I was lonely, sleep deprived, tired and broken. We began early intervention for Elle since she was only one year old but none of it seemed to help. She crawled for well over a year and began to walk when she was nearly two. Every milestone was missed and I became used to the disappointment. Every time I go to birthday parties and social gatherings, I watched other children laugh, run, talk and play with a deep sense of loss, guilt and ache in my heart.
I knew very early on what was missing from my life. While other parents felt joy and pride at their child’s milestones, I grieved and wondered if my child would ever walk, if she would ever talk, if she would ever have a normal life.
I knew very early on what was missing from my life. While other parents felt joy and pride at their child’s milestones, I grieved and wondered if my child would ever walk, if she would ever talk, if she would ever have a normal life.
It’s not that I didn’t feel love for my daughter, I truly did. I loved her so much that my heart ached every time I think about her difficult future. When I see her struggle to put together Lego blocks, string beads or grasp a crayon like other kids, I wondered what kind of life she will lead; how she will be perceived by the world and how she will perceive herself.
Will she feel sad, lonely or angry? Will she feel less worthy and incapable? Will she feel like an outsider? Every burning question nagged at the back of my mind and few words can describe the depth of my sadness at the time.
I tried my best to mask my emotions of course, and did whatever I can do to get her all the help I can. I quit my teaching job and began researching full time. I took her to specialists, requested multiple tests and researched various disorders and its functions. I even went through the arduous task of filing a grievance against my insurance company for refusing her speech therapy. It took over a hundred pages of collected documents and almost a year of waiting. Without a clear diagnosis, it seemed impossible to get her the help she needs.
I was frustrated at the doctors, administrators and social workers for failing to offer a concrete reason and solution. They called it speech disorder, hypotonia (low muscle tone) or developmental delay. These terms were all so new to me and I didn’t know where to go and who to turn to.
I simply needed an answer, I knew no other way to deal with my fear and uncertainty. I felt powerless and helpless as a mother.
Raising a special needs child is no easy task. It complicates the parent’s life in so many ways from extra doctor’s appointments, IEP meetings to picking up medication and driving to and from speech therapy many times during the week. Not to mention, the high cost of all the services.
A parent of a special needs child doesn’t get to videotape Christmas plays, revel at the child’s musical talents and athleticism, or imagine a hopeful future where the child pursues her ambitions.
Instead, the parent worries about whether or not the child will have another seizure episode in class, be teased again by typical kids in the school, or hold a stable job after turning eighteen. The parent wonders what will happen if he or she becomes old or falls ill. Who will take care of your precious child, who can you trust?
The parent worries about the present, the future, and all the bad and real things that can happen the moment you leave this world. Present is full of worry, and future brings fear of uncharted territories. It’s not easy and I don’t think it will ever get easier.
Elle is now eleven years old. Through her I learned a lot, grew a lot, and am now able to find reasons for gratitude anywhere I go. Watching a beautiful young soul struggle to do all the typical things we take for granted like talking, writing and living life without medication could do this for anyone.
Being her mother is a blessing in disguise, a source of genuine happiness and hope where I’m challenged everyday to dig deeper and search for reasons to be thankful during the roughest moments.
So that answer that I was desperately seeking on that sad night, that answer that no medical doctor, school administrator or social worker could give me, I now know.
God gave me Elle, a very special special needs child, because he wants to use my voice and writing to protect the happiness and rights of these children. In order to do this he made me a parent, not an educator or lawyer or administrator but a parent who truly understand these kids’ needs from a closer and deeper perspective.
When I have a rough day at home, I picture God holding her in His arms. He is looking down upon millions of soon-to-be-mothers, pointing at me and saying “There, there she is. I want Angela to take care of this child. I know she will do a great job. I trust her and know she will do this for me.”
When I have a rough day at home, I picture God holding her in His arms. He is looking down upon millions of soon-to-be-mothers, pointing at me and saying “There, there she is. I want Angela to take care of this child. I know she will do a great job. I trust her and know she will do this for me.”
This image of God looking down upon me, trusting me and choosing me, brings me so much peace and gratitude. And it reminds me again why she is here with me today. To the world she is a special needs child but to me she is perfect. There is nothing wrong with her. She is who she is, just different with a different set of needs and desires like all of us. She dances to the beat of her own drum and grows according to her own timeline.
She is special, worthy and beautiful just like all of us.
Through her I learn every day the true meaning of unconditional love. Not the kind that is controlling, self-seeking and self-gratifying but one that becomes whole through small acts of daily sacrifice and prayers.
God has a special plan for her and I’m blessed to be a part of it. He lives in her eyes and every time she looks at me, I feel His amazing grace and overflowing love.
Go ahead, look a little closer. If you let go of all worldliness, desires, greed and simply let your soul speak its purest language, you will see Him too.
Beautiful. Thank you for sharing your story.
Thank you Kara! 🙂
So beautiful. Yes, the deep love and struggles are real. My son struggles in his own way and it’s very hard to watch.
I don’t know your son’s struggles but I understand the deep love that comes with deep pain. I guess this is how motherhood teaches us valuable lessons, that of unconditional love. Thank you for reading and commenting. 🙂
Thank you for sharing
Winnie
Thank you for reading Winnie!
Angela,
Your story is beautiful! You’re a good, strong mama. Thank you for sharing this story.
Thank you Tiffany for your friendship and support always. 🙂
Beautiful… I loved every single word… Bless her she and know you are a special mummy because you have such a beautiful special child. Thanks for sharing
Thank you, that means a lot. I used to think I might be the opposite of special, as if I might be getting punished, but I now realize how wrong I was. Thank you for reading.
E will always have a special spot in my heart. We are in this together Angela. My girl was also diagnosed with a genetic disorder 2 years ago (Williams syndrome ) it’s a deletion of one of the chromosome. What you written is beautiful.
Really? I had no idea. We are really in together Vivien. Thanks so much for sharing your story. I’d love to hear more about it one day so we can offer love, encouragement and support. How old is she now?
Thank you so much for being courageous enough to share your story. I am so moved and proud to call you my friend.
Elle is beautiful and such a blessing to anyone who knows her.
Aww thanks Connie for always being so sweet to E and for your love for our family! Honored to call you our friend.
I too have walked a very similar journey as yourself and can relate and connect with every word you put here. God has blessed US in a very special way. Keep on pushing forward mama!! There is joy in every step.
Blessings.
Helen
Thank you Helen. Yes God has blessed us in so many ways. I believe our lives are much fuller thanks to our hardships. <3
I wish I could reach over and give you a hug. You are an extraordinary mama and God picked the perfect person to mother this little angel. I’m glad you guys finally have a diagnosis and that she is thriving well in classes. <3
Thank you for that virtual hug Katrina! Yes we are lucky to finally know what can and cannot improved. Everything is clearer with a diagnosis. I hope I’m that perfect mom, still striving every day..
Such a beautiful story Angela. Everything happens for a reason. Life is not perfect but sure it has perfect moments. I’m glad your little girl is much better now! God is good always. Thumbs up to you for staying strong!
Thank you Diana for your kind words! Yes it’s hard to believe it sometimes, but I believe everything happens for a reason, even the most devastating and painful parts of life! God IS good!
Beautiful <3 I wish more parents would speak out.
Thank you. yes it’s so important to speak out but hard sometimes. Thanks for reading, I’m glad I began this journey of sharing stories.
You and other parents like you are my inspiration. Both my children have sensory processing disorder and it comes with it’s own set of challenges, but are minimal on the scale of how bad it could really be. I don’t know if I would be able to be as strong as you. And maybe that is why you were chosen.
When life gives you something difficult, we end up adjusting and becoming stronger. I’m sure you would be able to too. Sensory processing disorder can be difficult too, our journeys are different but all full of challenges isn’t it? I guess that’s motherhood.
Grateful reasons self-seeking baby much be developed
I just want to hug you for sharing your family’s journey. Yes, God has deep and beautiful and perfect imprints on Elle. And isn’t it so amazing that each of our children are so unique and created in His image? so grateful to have read your post.
Thank you for your kind words. Yes children are so amazing and teach us to be better humans. Now with another one, I guess I’ll have another set of lessons to learn! Thank you for reading. 🙂
So beautiful.. really loved reading this. Thank you for sharing! You’re such a strong mama and inspiration 🙂 Elle is beautiful! <3
Thank you for reading Amy. Yes Elle is such a sweet gift, thanks for recognizing that in her. 🙂 Going over to read your blog now!
I got teary-eyed =’) God is truly amazing! He trusts you a lot, and I’m pretty sure God is really proud of you. You are doing great, momma! Elle is such a beautiful young lady. May you and your family be blessed with so much more =)
Thank you so much for your kind words. It really means a lot, especially on days when parenthood is not so easy. Thanks for reading. 🙂
Hi Angela, I’m so glad I spent some time perusing your wonderful blog today. For work, I am a Special Education Administrator (Program Specialist) and work with student and their families on a daily basis, mostly at IEP meetings. I can’t tell you how much I needed a personal reminder/perspective of a friend who has a child with special needs, and recognizes the profound blessing of being chosen as their parent. I too feel blessed to be called into the field I work in, and needed a heart reminder as the days have become so busy and hectic – I will keep your words in my mind and heart as I enter my meetings this coming week and key in more closely to the heart’s of the parents I meet with. Thank you! And, hopefully you’re in a great school district, but if anything ever comes up with her IEP that you question or wonder about – although I’m sure you’re already an expert- please don’t hesitate to use me as a resource! Xo, Ashley
Hi Ashley, thank you so much for taking the time to read my writings and comment. It really means a lot to me! I had no idea you were a program specialist for a school district– I’m very familiar with the IEP process and know our district’s program specialist pretty well too. Thanks to dedicated administrators like yourself, kids like Elle can get the help and support they need. It’s been one heck of a journey (for lack of better words) but at the core of it all, I’m so thankful that I get to parent and learn with a child like my own. Its great to find a mama friend who is a program specialist! Will be sure to ask you for advice when I need it- I’m sure they will come up! Much love to you Ashley xoxo
Speaking hard is vry difficult bt sometimes you have to to it ! Thank you for sharing
Lovely! I just fall……
This hit me At the core. It’s exactly how Ive felt and have been feeling. Thank you for helping me feel.. not alone. when you talk About imagining god Holding your child and choosing you to be Her mother, is the best thing I couldve read. Its been hard to feel grateful lately and this has definitely given me a new mindSEt about it all.