One week post discharge update

It is hard to believe it has only been a week since we were discharged from AI Dupont Hospital. My head is still spinning and going in a million directions. I am still trying to wrap my head around all that has happened with Julia. It amazes me how life can change in one split second. I have become so absorbed with all of Hayden's medical needs that this situation has struck me out of no where. Slowly, I know things will return to normal. Right now life seems so crazy, but I truly am hopeful once early intervention starts things will calm down.

Early intervention came to our home to see Julia on Thursday. Wow, what a different process it was this time around. I came into the Part C program knowing exactly what it consisted of. However, I still had questions, will Julia qualify? Those questions were quickly answered with a yes. Given Julia's medical release of post viral cerebellar ataxia she will qualify until she returns to her previously mastered skills. Again, this has been so hard for me. I am having a difficult time separating Julia's ataxia from Hayden's. I have only known how to be a special needs mom to Hayden. I am still figuring out how to manage both children with various needs, how to balance doctor and therapy appointments. Because I tend to be a little type A I feel like I need to have this figured out already. I struggle that I do not. The wonderful therapist at AI are trying their best to reassure me that Julia is going to be okay and that Julia is different from her brother. Only time will allow me to believe this. I know logically they are right but my brain will not shut off the worry.

Julia has been doing really well. She is crawling and pulling to stand. She still struggles with maintaining balance and trying to cruise. However, she is trying so hard. She is so strong willed that I know she will figure it out again. She really is not a fan of physical therapy, not that the therapist are not wonderful she does not like help. My baby girl has always been so independent and I hope this independent personality will provide to be a benefit in her recovery. We have had two pt sessions and one ot session. Next week we will venture to see her big brothers neurologist. I don't even know what to think or feel about this visit. I want her to look Julia over and tell me she is going to be okay. I want to know if Julia is going to experience any setbacks from this temporary condition. I want to know if Julia maybe has low end of average muscle tone. Most of all I do not want to put my little girl through anymore tests. Her big brother has gone through so much and she went through so much recently. I do not want to hear lets run a test for this or that. Somehow, I need to figure out how to approach this visit differently. I know I will figure it out, but today I do not have an answer.

Hayden started back to preschool this week. He was so happy to return to school and play with his friends. He has grown up so much this last year, which is bittersweet. I love that he is gaining some independence but it saddens me my little boy will be a big five year old! That seems so surreal.  He is talking so well and trying so hard to walk. We are eagerly waiting his results of his vestibular testing and what that is going to mean for his future and educational goals. It will be so nice to have some explanations to his delays. Although, the explanation will never allow me to understand why things happens the way they do. Why it happened to Hayden. The only explanation I have is he was meant to be apart of our family just the way he is. He was meant to give me strength that I did not think I had, and he was meant to help others. Boy that little guy brings a smile to my face everyday and to many other people. Hayden is also getting very excited to play soccer, which his daddy is helping to coach. He thinks that is pretty neat most days, other days he says its silly that daddy is going to be coach. I know he will enjoy the daddy son time like he did during baseball.

I am still so thankful for all the amazing people that have supported me during this time. I think everyday just how lucky I am to have so many people stand by our family. I truly hope everyone knows just how the small little things helped me and continue to help me overcome this new challenge. Everyone will always have a piece of my heart and gratitude.

Until my next update...

Thoughts from Julia

It was great to come home yesterday and I was really excited to see daddy, Hayden and Cody. My stay in the hospital was a little scary at first because of all the masks but it got better. I got use to people and started to like some of the doctors, nurses and therapist. I know I scared a lot of people especially my mommy and daddy but I am going to be just fine. I am starting to crawl again and I even got myself up our family room step. I am determined to not let this ataxia keep me down. I will be home with mommy for awhile so I will miss playing with daycare friends. I know my mommy will set up some play dates for me so I don't get lonely with Hayden starting school. Now I am going to start my physical and occupational therapy adventures. Secretly I was jealous Hayden got to go play and I didn't. I also wanted to thank everyone for helping my mommy. She was really worried and scared but all of the nice thoughts and prayers helped her get through. Well, I am going to try to terrorize Hayden now. I know mommy will keep you updated on my progress she is good at that. Hope you enjoy my photos below. Now you can see where we spent our time:)

P.S In case you did not hear I had HHV-6 aka Roseola which caused post viral cerebellar ataxia. Fancy right?

Much love

Julia

Five days and four nights Julia update

Staying in the hospital is counterproductive especially when you have so much time to think. It has been a challenging five days for me. I have watched my daughter go through so much and it breaks my heart. However, being here and the only things to do are to think and visit Dr Google can cause a recipe for disaster. If anyone knows me I research, I research online, in books, and by questioning medical professionals. AI offers a fantastic online medical history site while this site is great, it can be bad, as well. Last night I spent time reviewing the sixteen test that have come back for Julia. That is right sixteen!! The doctors have said they all looked good except the lumbar puncture results. I know this and this is why we are still here. This did not stop me from using Dr Google on other results that showed high or low values. It was a vicious cycle I think I was on the verge of a panic attack. I quickly was reminded by my cousin and friends to stop doing this to myself. I listened but my mind still raced. It makes it difficult to sleep and difficult to remain positive.

Today I was awake around 5:30 ish the construction at the hospital was starting. The first round of attending doctors arrived at 7:20 which woke Julia up. I never understand why this happens but I know there are other children to see throughout this hospital. They will be back around 930-1030 hopefully with the lyme's disease results and hopefully with going home. I am ready to be home. Ready to shower and sleep in my house instead of the hospital. I am ready to move on the path of recovery.

Julia is very happy now which means she is starting to feel like her old self. I am amazed at my daughters strength. How did she get to be so brave? Yesterday she decided to pull her iv out she was over it:) unfortunately they tried putting it back in. Just like her mommy she has tricky veins that we decided to stop poking her. Instead I opted to give her the antibiotic via an injection. At 12:40 last night a team of five came in. My sweet girl had to endure three shots at once. It was so hard for me to see. It burned she cried and needed mommy love before settling down for the night. I almost forgot to mention Julia was crawling around slowly with Hayden yesterday and she was playing with her friend Natalie. These are promising signs.

Now we wait for more test results and I pray we are released today. I also cannot thank everyone enough for the texts, Facebook comments and for my friends and family who will talk to me throughout the night. Even at 1 and 2 am. Thank you from the bottom of my heart. I love each of you more than you can know. I know Bob and I are blessed with an amazing support group that you don't realize until situations like these. So until my next report much love Renee & Julia AI DuPont 3F residents.

Four days and three nights update on Julia

Here we are on our fourth day at AI DuPont Children's hospital. Julia had another great night. We were only woken up a few times last night I think the nurses are starting to feel bad. Last night we were up pretty late since we took a late afternoon nap. Julia decided her idea of partying was playing in her jail and watching Elmo at 10:30 last night was completely acceptable.

I am starting to get use to this place. Seeing familiar faces and listening to familiar noises. I have even spoken to a few parents that have been on their tour longer. It saddens me that so many children are subjected to hospital stays. However, I feel extremely blessed we have a great hospital here in Delaware.

Today, started out like every other day our first rounds started at 7:40. Julia was not digging the interruption nor was I to be quite honest. After we woke up we had breakfast and played with some toys. Shortly after came in the infectious disease doctors and pediatrician. Julia likes this group she was even giving them the Julia stick out her tongue look. This is how you know Julia likes you. We got confirmation that bacterial mengitis has definitely been ruled out. This means we are off solitary confinement. Woo hoo we can have visitors and we might be able to walk outside. We are thrilled and I know Julia is eager for the yellow masks and suits to go away.

We also had some new visitors today A physical therapist stopped by. Julia decided she did not want to play and clearly displayed her fancy attitude. That is my strong willed girl. Next, our friends Shawn and Natalie stopped by. Thank goodness for guests. It is hard not to go stir crazy here. It was great to have company and Julia loved seeing Natalie. I can't say thank you enough for the food and toys. Julia is now sleeping as I write this new post. I am eagerly waiting to see my baby boy and my husband who are coming up soon. I miss our family.

We are staying another day which is tough. I just want to be home but I know this is where we need to be. Julia is being testing for Lyme disease and we are waiting for these results we also are waiting on other tests but there are too many to list. My sweet girl is going to need a few months of therapy to regain her strength and skills. I don't know how I am going to handle another baby going through early intervention. I know these are for different reasons but it still is hard. Luckily, we are armed with knowledge from Hayden that allows us to get the best therapist to treat her. So we wait and hopefully tomorrow we are ending our stay-cation at AI. Thanks again for all the love.

Xoxo

Julia had a good night

Julia did very well last night. She was so excited to see her daddy and Hayden. She even got a visit from her other favorite person Candice and from grandma. Luckily, she has been eating and drinking some which is a step in the right direction.

This morning we were woke up by some medical students followed by residents. Julia still is not sure about all the yellow masks, so we look for mommy for comfort. We had some pancakes for breakfast which by her smile meant they were yummy. After wards we watched some Elmo on tv. Julia hasn't really watched tv at all but Elmo was pure magic. Elmo has calmed my sweet girl down I guess there are far worse things I could be doing than allowing some tv watching. I just received a nice envelope full of sweet handmade cards. It sure made me cry. I cannot wait to show them to Julia. One was from our sweet friend Natalie who is just a few months older than Julia. She wanted to be sure Julia was not scared because she understood how this place could be scary since she spent some time here. Then her dear family my dear friend Shawn thank you for the little things and the brief smile on my face. The final card were from our other friends Matt, Shannon, Jack and Connor. They are such a support to me and I always admired their strength during challenging times. I am overwhelmed by the thoughts and prayers for my family. They are from new friends, old friends, family, co workers, business associates and the list goes on. This type of love reminds me that there certainly are a lot of good people in this world. I am reminded just how thankful we are to have so many supporters. Just the little comments, text messages and calls are getting me through another wrinkle in my life. I love you all for the kindness!!

Our new round of doctors came in. I was happy to report Julia has been sitting for a few moments and even pulled up to her knees!! We still are experiencing some ataxia but no where near what we faced earlier this week. Now we wait for more results and wait to be seen by physical therapy. Since we are frequent flyers to the outpatient physical therapy department I requested two therapist that we adore. I hope to see them this afternoon. Hopefully, we can develop a game plan for Miss Julia and hopefully tomorrow we can kick AI to the curb.

My worst nightmare

My heart has been torn in so many directions lately. This time it is my sweet baby girl. Unfortunately, my daughter has become ill with a virus that caused her to become ataxic. Imagine the panic I felt when I watched my beautiful daughter who has been developing normal loose those skills. She became so weak and lethargic and had difficulty even sitting.

We took her to the pediatrician on Thursday. Since I am an experienced special needs mama I was armed with a video in hand. My original fear was confirmed that the behavior she was exhibiting was not normal. He thought Julia had an enrovirus that had been circulating our area. It fit all the signs. Given her big brothers history he thought maybe she had some low tone and we should make an appointment with neurology. I stand weeping once again in my pediatricians office. Thinking how can I possibly do this again. Thinking selfishly what I did to deserve these things. I quickly reminded myself this is not what I should be feeling other children are experiencing far worse medical diagnosis. I left there Thursday thinking I had another child facing challenges. I left there thinking this was just a virus running its course.

Fast forward to Saturday. Bob tells me she is still extremely irritable and unable to support herself. I rush home and off to the ER we go. Of course it is summer in Delaware and I have two words beach traffic. We got here in an hours time and was taken back immediately. I spoke to doctor upon doctor. We are getting consults from neurology. Next thing I know we are headed for a CT scan, MRI, and spinal tap. Hours of testing a multitude of labs and the words of being admitted at 10:45 last night.

I was told at that moment it could be viral meningitis or encephalitis. I was told it could be post viral acute cerebellar ataxia. Okay I am familiar with all the big medical terms. Heck I probably can publish a medical dictionary. So I wonder is this impacting her for the long haul what are we facing.

It is now almost 24 hours since we were first admitted. What we know is it doesn't appear to be bacterial. We have seen a neurologist and an infectious disease doctor. We are running more tests and are leaning towards a virus causing ataxia. My sweet girl is in an isolated floor for infectious disease. She is seeing strangers in masks and cover ups. Little did I know her big brothers strength has warn off on Miss Julia. She has been so brave through every poke, prod, and test.

Now we wait. Wait for results wait to see how Julia's little body recovers. Our little family cannot wait to be complete again. Bob and I can't wait to bring our baby girl home. Be strong baby girl mommy loves you so much.

Vestibular dysfunction testing, check!

Yesterday our little family except Julia ventured off to AI Dupont Children's Hospital for the anticipated Vestibular testing for Hayden.  I am so thankful Bob was able to take off of work and join us for this test, it was going to be a long day. Hayden is normally so great during tests but sometimes things scare him and he just needs daddy. So, off we went Hayden was armed with both mommy and daddy for this long day.  I have been waiting exactly two years to be able to perform this testing for Hayden. My mommy gut has told me that something has been off, immature, underdeveloped with Hayden's vestibular system and no blood test or MRI could tell us these things.

We arrived for our first appointment at 10am which happened to be a physical therapy evaluation. This test even though I dread it should be relatively easy. I kept thinking to myself please Hayden show the therapist what you got. Let them know just how awesome you are. If you have been through several physical therapy evaluations like we have you know the Peabody is dreadful. It is dreadful from the perspective of showing Hayden's gross motor skills below a 1 year old. That is often a hard pill to swallow but I try to remind myself of all the gains Hayden has made. Well, Hayden rocked that Peabody assessment! I have never seen my man work so hard and show off what skills he has. My little man even held tall kneeling independently for 3 seconds. I know you are thinking 3 seconds but really 3 seconds is amazing. Hayden also showed the therapist he could walk up stairs holding onto railings without support, walk in his walker like a rock star, and even try to help take off his shirt. I was so proud of him yesterday he could not have done any better. While I know he is not at the development level of a 4 year old I know he has improved so much. Yesterday was proof he is simply amazing and he works harder than any child I know. It was also nice hearing from a physical therapist that does not normally treat Hayden that he is doing amazing and that he has nice skills to be able to one day walk independent. I guess it just allows us to keep the hope alive that one day he will take a few independent steps.

After pt we had a gait analysis done at the gait lab. This test just essentially video tapes Hayden with and without his braces. Hayden loved this test because he could race his daddy in his walker down the red carpet. Hayden also loves being on video so this was a win win for Hayden. The best part of this test for him was picking out a cool present at the end. What did he pick?  A little blue guy as he fondly calls the little alien. We had a short break to grab some lunch but not to much since we had some spinning to do in a rotatory chair.  After lunch we decided to let Hayden play on the playground. I love the hospital playground it is adaptive and he can climb around freely. Hayden being Hayden was trying to make friends and say hello but I think the other children were a little shy yesterday. We lost track of time and had to rush to our next appointment which was in the audiology department. The testing in audiology was not for his hearing but for the working of his inner ear and various other vestibular testing. There were so many and I cannot rattle off all the technical terms. However, what I do know is one test in particular, the vestibular ocular reflex test that I have been curious about confirmed my suspicion. Hayden has a nystagmus and for those not familiar what that means is basically involuntary eye movements. Most people experience nystagmus after swinging or spinning and it goes away. Hayden's tends to continue after these types of activities which is not normal.  We discovered yesterday that if Hayden is turned right his nystagmus is beating to the left. Basically, his eyes are crossing over visual planes which is not normal, this also indicates when Hayden is upright his world is jumping. The other test that showed a slight deviation is stationary nystagmus. Hayden was positioned laying flat and we turned his head to the right and left. When his head was turned to the left we saw two to three beats of nystagmus. The physician had said the variance is not enough to determine if he is impacted by stationary vertigo but it is a finding.

The day was long but Hayden was so strong and so brave. He listened so well and focused hard on what he was asked to do. We celebrated by taking him to the Disney store and letting him pick out a gift. I know we are probably setting expectations every time he goes for testing he deserves a gift, but oh well. I think Hayden does deserve a little something special because he is just an amazing little man, is brave and much stronger than a four year old. He decided to pick some cars toys like we needed more but that is what he chose. Now, I think we have close to 300 cars however it makes Hayden smile and that is all that matters. I also let him pick the dinner menu and he requested pizza so it was pizza night in the Schlenner household on Wednesday.

Now, we wait for our results. The team gets together once a month to review all the children they tested in the month of August. I eagerly wait the phone call from the coordinator on the findings. I am thankful we proceeded down this path and now I know a little more than I knew yesterday. I know this does not change the direction of what we are doing for Hayden but it does give us some new ideas for therapy techniques and how to better help Hayden organize his body in relationship to space.

Lifes little lessons

Amazing how life can take you in so many directions. This week has definitely been a direct reflection of how life is simply amazing but challenging at the same time. I have had a pretty emotional week. My week was just spiraling down a path that was destin for disaster. It was filled with worry, sadness, self pity, and stress. I also cannot forget to mention sickness. This time it was not the kids it was me, yup got hit with bronchitis.  Bronchitis has fully won this battle but I am slowly regaining my energy and hopeful that in a few more days I will begin to feel "normal" again. Whatever normal is, right? Since I am a self proclaimed social media junkie I was able to see some happy things happing in the world. People getting married, people going on fabulous destination vacations, people running marathons, people enjoying every day life, people announcing engagements or pregnancies,  and new lives being brought into this world. The new lives being brought into this world reminded me about all the amazing life memories.

Tonight, I reflect on some wonderful memories that are happening in my home. Memories that melt my heart, memories that make me proud, memories that show me love, and memories to last a life time.  My baby girl turned 13 months old on August 10th.  I know I should stop counting in months but it is so hard when she is your little baby.  Julia is such a strong little girl, determined in everything she tries, curious about the world we live in, in love with her big brother and daddy, and most of all my little sweetness. No one can take away our mommy daughter snuggles and that bond that was formed the moment she was conceived.  Julia is my amazing little lady and full of smiles.  She also has to endure some of my fears. Fears of not meeting milestones, fears of germs, and fears of not being everything she needs.  However, my sweet sweet Julia in every way is helping me put my fears aside. She reminds me about the small little joys in life.  Yesterday, on her 13 month birthday my little lady decided to start cruising. It is slow and steady just like everything she tends to master. She was so proud and you could see the spark in her eye. The new found ways to explore her new world. After all there is a lot to see still. 

Hayden who is my strong strong little man. He continues to amaze me every day with his fight and determination. He has gotten so much stronger lately. He really is determined to try to ditch his walker from time to time.  We have been visiting Easter Seals on Friday's for therapy and Hayden wants to walk every Friday. Hayden does not want to walk with his walker he wants to walk by himself and he forcefully will tell his therapist that he is not using his walker. For the past few weeks we have been walking holding the hand rail and my hand. How I love walking holding hands with my son. It is an amazing feeling his little hand inside of mine. He works so hard to walk down the hall at Easter Seals. However, he does it and what more can you ask for. He is my angel.

Today, I also got to sit and really watch the bond that has developed between Hayden and Julia. They love each other unconditionally. The look forward to seeing each other every day. Sure they fight over Julia stealing Hayden's Mater or Lightning McQueen but they would not be siblings if they did not fight. However, what I love the most is watching them interacting. Hayden makes Julia smile and belly laugh better than anyone. Bob does an excellent job of this with our children, he is always a good dad bringing the calm and laughter to our home. Bob has some competition in Hayden because the laugh is endless her big brother is just the funniest person to Julia.  He shows Julia how to climb on things she shouldn't. He has her climb over basket ball nets like they are obstacles courses, standing at their kitchen and cooking me a meal, emptying all 245 cars that Hayden has aquired out in the playroom, eating chalk, wrestling our yellow lab Cody, and throwing balls to name a few things. These very moments melt my heart. These very moments remind me as much of a blessing Julia was to Bob and I she truly is the world to Hayden. Hayden will always have his sister, he will have a life long friend, and he will have a bond that is stronger than the bond we provide as his parents.

Life can be challenging and some times it overwhelms me, but these special moments remind me this is what life is about. Life is about making memories and most of all life is about love. Love for your family, love for your friends, love for the people who are in your life for a brief moment, love for the people who just walked into your life, and love for people you have not met just yet. Simply put life is truly a blessing and amazing.

Simply Perfect

After writing an emotional post yesterday and really reflecting on my journey this week our weekend ended perfectly.  Bob and I took the kids to the outside pool at the Y today. This may seem like an ordinary venture for many people. However, an ordinary venture turned into a simply amazing day.  The weather was beautiful, the pool was not crowded and the kids were perfect.

I love the kids pool at our local Y it allows Julia and Hayden the opportunity to explore independently. Our baby girl is such a dare devil. She really has no fear and did not mind trying to venture away from Bob and I today. However, she is one and despite her thinking she is at least five we had to stop her in her tracks on several occasions. Then there is my sweet sweet Hayden. Hayden loves the pool, he loves to splash, and swim. He loves watching other kids swim and especially watch his daddy go in the deep end where he does not explore. However, today was perfect. I probably will over use this word but really perfect describes today.

The pool provides Hayden with a sense of independence. He does not have gravity fighting against him in the water. My little amazing boy was standing in the water. Standing with ease and standing with confidence. Does it get any better than that? As a mother who has longed to see her first born child stand alone days like this make my heart full. The pride exuded from Hayden's face will forever be ingrained in my mind. Now, if standing was not magical surely Hayden letting go and swimming in the way Hayden knows how to swim is the moment you say yes be free. Free to explore, free of the gravity, free of struggle and free to beam with confidence that my little boy did something amazing today.

I sat for awhile with a permanent smile on my face. Watching my son playing with his daddy. Watching my son splash with his baby sister. Watching my son swim, how cool is that? I really did not want our swim day to end but hungry babies and a growing awareness that Julia needed to nap became evident. We left the Y today and it was perfect.

Hayden my sweet perfect boy I hope we have many more perfect days. I love you and you simply amaze your mommy every single day. You are my inspiration.

Reflection on life

On Wednesday I participated in a video interview at Easter Seals about my journey as a mother with a child who happens to have a disability. While, I have told Hayden's story many times this was different. The interview was intimate and gave me an opportunity to reflect on how four years has changed my life. You would think by now that I would not be concerned about what I say or how it is presented but I was. Sure, I have spoken in DC, given testimony a few times at our state capital, spoke in crowds of 300+ people and even written on this blog for all to see. However, Wednesday did not compare to any other times I have spoken about Hayden. It was almost cathartic in a way.

The interviewed started out explaining Hayden's medical condition, at least as we know it today. This was the easy stuff, four years ago, it would not have been easy but Wednesday it was. Wow, to think I went from being afraid to say my child was disabled to embracing who he is in four years is simply amazing. I remember December 31, 2007 like it was yesterday. Sort of surreal now, if I think about it. I went to the hospital ready to meet my son, ready to see what he looked like, ready to hold that precious being I carried inside me for 38 weeks. My labor and delivery was not the ideal fairy tale you dream about. In actuality it was a scary time in my life. A time that I did not know if I was going to pull through but I did. I survived one of the scariest joyful moments of my life. My road to recovery was tough, around eight weeks post partum I finally got my strength and blood supply back to normal, I thought now lets celebrate my new life I brought in this world. We cherished Hayden's calm passive demeanor. He was such a happy content baby. Little did I know there were signs at 3 months that something was just not right. However, six months came and then nine months came. It was time to face the reality Hayden was not hitting milestones like other children his age. I had to break down and face the facts with our pediatrician, who by the way is my rock. I have written before how much I adore Hayden's doctor, but I know today we are very fortunate to have him apart of Hayden's journey. The next few months were a blur, I went alone to an appointment to have Hayden evaluated. I was so uneducated at the time that I should have not ventured on this journey alone. Hayden was assessed by therapist and a developmental pediatrician. I don't remember everything they told me but I remember hearing your son has hypotonia and might be mentally disabled. What he has hypotonia and mentally disabled my son who was going to be a football, lacrosse or soccer star. This can't be right. I had so many dreams for Hayden and they were crushed, at least I thought at that very moment. I cried, I called my dear friend and cried some more. I was crying because I was scared, I was crying because this was not suppose to happen, and I cried because I was sad for my son.

Fast forward four years, I now know those feelings were normal. I know that I did not purposely give my son a disability. I know that I am truly blessed beyond words to have Hayden in my life. I have come so far in this journey as a mom of a child with a disability. I have learned to admit that my son has a disability and that is not a bad word. I have learned to embrace differences. I have learned to cherish the small things in life. I have learned that I am  a stronger person than I thought I ever could be. I learned how to fight for services for my son. I have learned to take things one day at a time and most of all I have learned to redefine who I am.

In this journey things have happened. Some things I wish did not happen, somethings if I could take back I would but it would not be life if there were not ways to learn and grow. Sure, I could call and talk to friends and family more. Sure, I could be a better worker or advocate but for now I am Renee. I know I carry my heart on my sleeve, I know I am strong, I know I am emotional, I know I love unconditionally, I am educated, I am compassionate, a good wife, I try to be a good friend and daughter. However, I do know I am the best mom I can be to my two beautiful children.

I am reading a book a dear friend let me borrow, the book is titled Bloom. I am not finished reading this book, but this book has made me cry. Cry tears of joy and cry because I had similar feelings about Hayden even though he is not rocking an extra chromosome. I enjoy reading books that make me think and challenge my perspective. This book has done both. Which reminds me I am part of a national program that is funded by our state's  disabilities council. In this program I meet once a month and learn more than I could have ever learned about being an effective advocate, parent, and well versed on disability rights.  This program like the book I am reading has changed my perspective. I view things differently, I believe my story does make a difference, I am a better mom and wife, and I am not afraid to knock on some politicians doors to get what I need done. Most importantly this program has brought people in my life that I needed in my life. People who get it, who have been there, who are parents of children with disabilities. I feel like they have been in my life forever, but they have not. However, I do know they will continue to be apart of mine and Hayden's journey!

I was always envious of my friend Danielle who wrote a blog. She is a far better writer than me, but mostly I was envious that she started writing down her thoughts somewhere. I thought at first I did not want everyone knowing what was going on in my life, but I soon realized I needed to write. I write to provide updates on Hayden and I write for me. I started this blog because we have a large family and we have many supporters of Hayden. It was a way to tell everyone what was happening in Hayden's world so I did not forget every detail. I often do not have time to make phone calls to everyone but I try to find time to make updates to this blog. It is important to keep everyone informed and it is therapy for me. What I cherish the most about writing is the support I receive. While some people might think I should have done this or tried that they support my decision to write about our life. This is all I need. I know I do not always have the right answers, I know that my views on procedures, tests, programs, doctors is not going to be the same for everyone. However, I do know I am making the best choices for Hayden.

Hayden has turned into an amazing four year old little boy. He has touched more lives in his four short years than I have touched in 34 years. He brightens my day and makes me laugh. Hayden is determined and full of life. I do not ever want to take that away from him. I do not ever want to let his disability shelter his dreams. Hayden is four and we treat him like any four year old. We go out shopping, eating in restaurants, family vacations, walks in the neighborhood, birthday parties, etc. Sure, I have people raise an eyebrow when they see my four year old not walking. People stare and wonder what is wrong with him and my answer to that question is nothing is wrong with him. He just happens to have hypotonic cerebral palsy. That does not define who Hayden is. Hayden will continue to be strong, full of life, happy, determined, and a typical little boy. As Hayden's mom I will continue to fight and explore what I think is right at the time for him. I love my little boy more than anything and that will never change.  So, I thank everyone for being apart of this journey with me. I thank you for the support and know that while I may not have all the answers I try my very best to make informed decisions. Thank you for loving Hayden, for who he is and what he has accomplished and thank you from the bottom of my heart for accepting our little family as we are.