A beautiful poem...must read!

This is simply beautiful… it’s a must read for families just beginning their Special Needs journey, just like Welcome to Holland.




Welcome to the Club
(from Jesswilson.wordpress.com)


My dear friend,


I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will.

You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again.

You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will.

You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities.

You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son (or vice versa). You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.


With love,
Jess
Jesswilson.wordpress.com

Kaylee's birthday bash...1 yrs old!

I can't believe my little girl turned one years old yesterday. As usual, she first woke up with her trademark smiles especially after singing the happy birthday song. It was so precious..she loves that song..she just couldn't stop smiling and giggling. After loving on her, we got ready for Kaylee's speech and feeding therapy. I know why on her birthday..she deserves a break right. Well we decided to go since she loves speech therapy and its only a 30 minute session. So, we made into a family affair. Our family of four cheered Kaylee on and sang songs to her. Did I mention she loves the ABC song..she can't get enough of it. It was a great opportunity to include Allison in the mix of things. Allison is such an awesome big sister, very protective and proud of her little sissy. It's so cute to watch Allison interact with Kaylee. They played with uncooked pinto beans together. Kaylee seemed to like the feeling of the beans...she kept grabbing them and mixing them around the container causing a mess. Once again I was amazed that she's touching and exploring with different things. The beans was definitely a good idea...Megan our speech therapist is awesome. Kaylee loves her and we are glad she's part of Kaylee's care team.

Kaylee was a big hit at her Chuck E Cheese birthday party. She loved every minute of it and I was pleased with the turn out. She was getting tired towards the end but its expected with all the activity going on. Kaylee looked adorable in her pink dress...just like a princess. She was a good sport wearing her princess birthday hat...so precious. Kaylee enjoyed everyone's company and loved all the attention. She didn't seem to be overwhelmed with all the lights and noise, actually I think she was intrigued by them. She was very alert taking everything in and watching everyone dance and play. She wasn't to sure about Chuck E Cheese..she just watched him and turned her head away. At least, we got a good picture of them together. I'm so glad we brought her high chair. She just sat there and everyone came to her like in a true princess fashion. I was very hesitant to give her any food since she gagged last time I gave her bread. She transitioned to stage 3 baby food very well. She loves fruits and yogurts pretty much anything sweet...she must take after Grandpa Bruce and her big sissy. I've tried the little stars that dissolves and she tolerate them pretty well. So, we decided to be brave and give Kaylee some pizza. I was so surprised to see her eat the cheese part of the pizza. She chewed it up instead of swallowing it or gagging...I was so amazed. She drank some tea though a straw and tried some birthday cake. It was too cute to see her eyes light up after giving her some frosting...it was priceless. She kept wanting more but I limited the amount to avoid any tummy aches. Kaylee had some cute baby friends....her little boyfriends. The two little boys were Kaylee's age and both of them have Down Syndrome. Brayden and Jack are so precious and loving. They are so happy always laughing and smiling. Kaylee is so lucky to have such wonderful little friends. It was so precious to see them staring at each other...Kaylee loved the attention. Overall, we had a wonderful time and couldn't be more pleased with the turnout. It would be a day that we will never forget and always treasure. We are so blessed to have such loving and supportive family and friends. Thanks again for your prayers and support!

God Bless you all!

Happy 1st birthday Kaylee!

Kaylee's entrance into this world marked the commencement of a miraculous journey- a journey of challenges and obstacles, a journey of beauty, grace, and hope. She made her entrance with a small deletion on her 1st chromosome, and so began our family's walk with 1p36 deletion syndrome. Despite a small deletion on her 1st chromosome, Kaylee provided our family with multitude of blessings, trials, and lessons. Her small body arrived with feeding difficulties, acid reflux, infantile spasms a catastrophic seizure disorder, hearing loss, umbilical hernia, blocked tear duct, farsightedness in both eyes, and hospital stays at Driscoll Children's hopsital in Corpus Christi. As always, Kaylee flaunted her feisty spirit and persisted on to complete a two month duration of ACTH therapy a very strong sterioid injections. We are blessed to say Kaylee's seizures finally were brought under control with ACTH therapy, a drug that gave Kaylee the upper hand on epilepsy. But to limit Kaylee's existence and achievements to the confines of a genetic condition would be the ultimate disservice to our little fighter girl and our God. Kaylee is a testament of God's faithfulness and timing. Kaylee is a beacon of light in a shadowy world of hardship. She is an illustration of perfection in her innocence and resiliency. She is a representation of all that is good. She is a daughter and a sister who has been the guide for her family and their faith on a walk into the unknown. She is an expert teacher on living each day and each moment in the present. Though her strides thus far have already been numerous, she undoubtedly has much more to share with this world.

Today, my little lovebug turns one! Where does the time go? It's been a emotional roller coaster with our ups and downs for the past year, however, I would do it again just as long Kaylee remains a happy and healthy little monkey. We are so blessed to have her in our lives. She fills our hearts with happiness and unconditional love. She teaches us everyday the true meaning of patience, compassion, and love. She's our little lovebug and our fighter. We are so proud of our beautiful Kaylee bean. Mommy, daddy & sissy loves you so much!



Accomplishments during the 1st year



Kaylee has come a long way since the beginning of this journey. Our therapists are just amazed with Kaylee's progress. Every time she goes to therapy, they can't believe how fast and strong she's getting. She always seems to surprise them with something new. Like yesterday, she played with a ball and loved it. It was too cute...she would smack the ball and watch it roll away. It was like heaven watching her giggle...she has such a hearty laugh where her whole body shakes with delight. It was so precious to finally watch her play...a dream come true.

At this point, she still needs some assistance with sitting. She can't sit by herself as of yet, but she's on her way. She can extend her torso and sit up straight as long as we are supporting her lower back or her shoulders. She can sit up with support for longer periods of time as long as we are entertaining her. Once we stop entertaining, she would fling herself backwards. Every once in a while, she will sit up without any assistance for 10-15 seconds, then she realizes that she's doing it all by herself and flings herself back. She thinks its funny when we push her forward and she catches herself from falling. She's doing much better of "righting" herself and trying to keep her balance. This will build on her postural muscles and her defense skills. We are praying and hoping that she'll sit by herself at 18 months. I really believe she can accomplish this goal. Her trunk is getting really strong..it's her shoulder girdle that needs to improve in strength. In order for this to happen, Kaylee needs lots of tummy time. She really loves to be on the floor gym activity mat but prefers her back. She use to cry once we place her on her tummy but now she can tolerate it for longer periods. Kaylee is doing awesome with holding herself up with locked arms for at least 2 minutes. Now, you've got to catch her in the right mood, but she enjoys viewing the world from a different perspective. We have to sing the ABC song and she will tolerate anything for longer periods. Its amazing...she would cry throughout the entire therapy session but if you sing the ABC song she calms down and smiles up a storm. So the entire session I have to sing the ABC song to get her to cooperate. I'm sure no one wants to hear my singing, but whatever it takes to see her progress and make her happy. It's these little accomplishments that keeps me going. We will continue to keep you updated on her progress.

Happy 1st birthday, my little lovebug

Happy 1st birthday, my sweet little girl. From the first moment I held you in my arms I adored you so completely. You were so quiet, unsure of the new world that just welcomed you, but when I spoke to you and held your tiny hand, you immediately blinked your little eyes and studied me with complete trust. I felt as if we had known each other for an eternity already and I knew right then that we would guide each other.You are the light of my life. You have shown me so much and taught me with your guidance. Your steady strength is matched only by your loving gentleness and your playful spirit. I love seeing you for the first time each morning and watching your face light up when I say "good morning"....its priceless. I love your toothy trademark smiles and giggles that makes your whole body shake with delight. You are always in such a good mood after waking up so full of life. I love singing songs especially the ABC song and dancing with you and watching you smile with such joy for music. I love your little giggle when we play Peek-a-Boo and other silly games. I love giving you special Mommy snuggles. I just love you. So very, very much, I love you! We are so blessed to have you in our lives.

Happy 1st birthday, my sweet loving Kaylee bean…my little lovebug.

Neurology Update

On June 29th, we went to see Kaylee's neurologist for her 3 month check up. Overall, everything went well. Our neurologist was very impressed with Kaylee's progress. When we first arrived there, they measured and weighed her. She weighed 16lbs and 6 oz and only 3 percent on the growth chart. As far as her height, she was 27.6 inches and 25 % on the growth chart. She's a small little monkey but at least she's growing and gaining weight. Dr. Deline asked many questions pertaining to cognitive and physical developments. She was very surprised of all of her accomplishments. Dr. Deline did mention that she still was low tone but it's much better than being high tone because we can build her muscles up. She went over her labs and said everything looked good. Because it's been 4 1/2 months since Kaylee's last seizure, Dr. Deline wanted to start the weaning process on the Depakene for the next 2 months. She was mentioning that it's nerve racking during the weaning phase because you don't know it the seizure may come back. But also keeping her on Depakene can play havoc on Kaylee's little body causing so many side effects. Well luckily it's a slow wean and if we see anything that resembles a seizure then we can increase the dose and get another EEG done. I'm praying that Kaylee does well during the wean and remains seizure free. These anticonvulsant meds are some nasty stuff and can prevent her from moving forward in her developmental milestones. On the upside, Kaylee's EEG remains NORMAL....Praise GOD! We've been blessed again..God is so good! Thank you everyone for all the prayers and support. Please continue to keep Kaylee in your prayers to remain seizure free for good.