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Friday, January 27, 2012

Bittersweet moment

Last night our newest addition to the family began sitting independent and standing to play at a toy. She is six months. While I was elated for my Julia I felt a sense of sadness and anger for Hayden. My sweet Hayden struggled to do these tasks. He truly was not able to I say comfortable sit with stability until 2.  I know I should not feel this way but I can't help it! These are days that make me so angry for him and question again why this had to happen to my sweet boy? It just is not fair. I did everything right with both pregnancies. I did not drink, smoke, or even eat lunch meat when pregnant with Hayden. These are the days I say it is just not fair.

He is working so so hard on walking. Every night he wants to show his baby sister how to walk. My heart breaks that it is so difficult for him.  I pray every day that a miracle is granted and my baby boy can walk on his own. I am trying not to give up faith but I see just how hard it is for him.  However, I know time has been on our side. While it has been a long journey it is a journey that has provided me with so much strength.

I love you Hayden. You are the best thing that happened to your mommy's life. xoxo

Sunday, January 22, 2012

Just a little update.....

It has been a few days since I have posted.  I just closed Hayden's fundraiser with 31 on Friday. We had a huge success and are able to donate $175 of our sales to Easter Seals. Not too bad considering this is our first 31 fundraiser.  Hayden's team this year is setting a goal of raising $1600. Pretty aggressive given the economic environment but it is a cause our family strongly believes in. So far we have raised $425 with our fundraiser total.  We hold our next fundraising event on February 27, 2012 at our local Friendly's in Middletown, Delaware. So, if any of our readers are local please come and join the fun.

Now, onto Hayden news. This week has been pretty exciting.  Hayden has continued to improve his walking speed at school with his crocodile walker. He is now walking from his classroom to the gym in 1 min 30 seconds. This is huge! He knocked his time in half. He is also able to keep up with his peers walking in the hallways with his walker. I am hoping when we get our new AFOs his speed will continue to improve. He continues to ask to walk at home which we are trying to practice very hard. He is improving daily being able to walk with one hand. We now tell him let's show Julia how to walk. This has proven to be great motivation for the little man. He is also still working hard on potty training. We finally got our adaptive seat. Insert big claps here!! He feels comfortable sitting on the potty which is wonderful. I love that he asks to go. Now, the big battle is getting school to get the seat for us. In order for us to be successful this needs to be carried over to every place Hayden travels. The joys of a special needs mama never ends. Advocate, Advocate, Advocate.

I am very fortunate to have discovered some very handy resources here in Delaware. I just attended the PIC of Delaware meeting. Where has this organization been all Hayden's life? Seriously, why did I not know about this sooner. I think I am going to find some very valuable tools from them. If anyone from Delaware is reading check this organization out! I also found out recently that I got accepted into the Delaware Disabilities Council Partner's in Policy-making. This is a huge honor and will better equip me with all my endeavors as the voice for children like Hayden. I attended my first lobbying session in Washington, DC in November.  Hayden did not accompany me to DC. That would have been a very long day for him however we are off to the joint finance committee meetings in February in Dover. I look forward to showing them just what early intervention has meant to our family and others. Here is hoping funds do not get cut! I think Hayden will make a big impact who would not love my little guy.

Well, time to get ready for a day of watching football. Go Ravens and 49ers!! Eagles are out so this is our hope for this year superbowl.

Friday, January 13, 2012

Easter Seals Captain's kickoff

Last night we enjoyed our second Captain's kickoff event for Easter Seals.  Hayden was the ambassador last year and boy did he enjoy it!  This year we are participating again and Hayden has his own volleyball team Hayden's Heroes.  I think last night was one of our larger kickoff events with over 120+ people attending. Of course in true Hayden fashion he was all over the restaurant being the true Easter Seals ambassador.

Vince Papale of the Philadelphia Eagles and the movie Invisible was our guest speaker. We got to meet him, take some pictures and he even signed Hayden's football. Hayden is a big Eagles football fan. Probably due to the fact we are a Philadelphia sports team family. Hayden kept saying on the way there Eagles football party. The little party animal did not want to leave his football party but he had school this morning.

We also have the honor of knowing Kevin Reilly also a former Eagle. He is one of Hayden's biggest fans and such a great guy. Someone who truly shows strength in adversity.

I am sure you will be hearing more about Hayden's fundraising efforts and his adventures leading up to the volleyball tournament in March.

Wednesday, January 11, 2012

Wonderful start to 2012

Wow, I have so  much to catch every one up on.  We had a bit of a rocky start to our holidays. Hayden started out sick with croup and strep throat poor guy.  Despite being sick he enjoyed his Christmas and celebrating his birthday on December 31st. I am still sad my little man is growing up. This has hit me this year that he really is a big boy now.

On January 7th we had his birthday party with his friends and cousins at a place called xbos in Smyrna, Delaware. This place is wonderful for Hayden and really for many kids with disabilities. It is a soft play facility and you can hold birthday parties. Hayden had so much fun crawling through the tunnels and playing ski ball his favorite game. We arrived there around 11:30am and didn't get out of there until 3pm! Hayden did not want to leave but mommy and daddy sure were tired. To see the smile on his face all day was priceless. This by far was his best birthday party. We even had a few friends come from his preschool class at school. It was great to see Hayden interact with everyone.

Last night was our big news. As many of you know we have been working on independent walking. Through our practice we have been working on walking only holding one hand. Last night he did it with ease. He told me mommy I walk to show Julia. That is his baby sister who he loves dearly. He was able to walk holding my one hand in our family room, up a step, through the kitchen, in our foyer to the office in the front of our house. He wanted to do it again but we had to shower to get ready for school today. We made such a big deal telling him how proud we were and what a great job he did. We also had him give Julia a high five. She is six months now so that was super cute. He was beaming ear to ear.  I just love him so much and I am so proud of everything he does.  Here is to a great start to 2012 even though it was a tad rocky at first with illnesses.

Sunday, January 1, 2012

My little man is four!!

I meant to write this post yesterday but the day just got away from me.  It is hard to believe that four years ago on December 31st my little man was born. I remember the day like it was yesterday. I look at him now and think it was truly amazing the precious gift I was able to bring into this world.  We have had a rocky few years but have gotten in a really good place with the minor exception of our unknown heart concerns. Hayden has accomplished so much despite his disability. He is talking so well now. Strangers can understand him and we know exactly what he wants at all times.  I had been focused so much on walking that speech was secondary to me. I can't believe I even placed that as a secondary concern. Now, that he is talking so well I am relieved he can communicate with the world.  He is still working very hard on walking independent but has gotten so much faster at crawling on all fours and walking in his walker.  My goal for him in 2012 is to become efficient at using his walker. I want that to be his primary choice of mobility versus crawling. He can walk but he chooses to crawl because it is faster. However, I really just need to take some time and celebrate everything he has done. He is such a joy to be around and he lights up my world. I honestly think sometimes I really am lucky to be his mom. He has given me so much more than I anticipated. Of course I get the love he shares for me but he has taught me who I truly am. He has given me a new purpose and a life that I can be happy that I have lived. He has brought me to understand truly what is important in life and to not take anything for granted.

For Hayden's birthday we celebrated at home with a cake with our little family and my cousin's family. We did not do anything big because he is still recovering from being sick and we have his big birthday party next Saturday. I cannot wait for him to enjoy his day with his friends.

So, for now I just wanted to report we had an excellent day yesterday and we are really looking forward to what 2012 has in store from us!