Thursday, December 11, 2008

Thoughts on being positive

Mike and I seem to be in warrior mode now. We got a lot accomplished today!!! Through contacts and more we have set up therapy for Jude, found a contact with Scottish Rite, received numerous referrals, and even discussed therapy for our family as a whole. As stated we will no longer cry over what may happen! That doesn't mean we won't shed some tears over who we wanted Jude to be, but we realize that was our own selfishness. We will pick ourselves up with our arms granted a little floppy, but believe in ourselves and Jude without any doubts. We have decided to only move forward! We have been told by many people going through this same type of circumstance that they too were told their babies would not live much longer, or wouldn't make it out of early childhood.... and their children are much older. So we are beginning to see a little bit of a sunrise in the horizon we are riding off into. This sunrise is full of hope, hard work, and unconditional love. We are ready though!

Mike was SO good with Jude today. We will find a way to keep one of us at home, and it will all work out because we have faith. I want to thank Jocalyn my new found friend for helping me through a lot of this. Sometimes my mind is so scattered I forget to email her back, or answer appropriately but she always seems to have the right information or words. Whether you know it or not you have helped so much. I have noticed I forget who I talk to during the day and about what. So forgive me if I am a little lost sometimes.

Anyway, on another note my cousin sent me an emailed gift certificate from Zappo's. I have a tendency to buy Emily tons of shoes and ignore the mess on my own on my feet..ha! Not that I don't have the funds (normally), but I never have the time. Well my brown boots that I love are just falling apart, and my cousin sent me a the gift certificate with a sweet message that said "Get yourself some new boots. We can't have you going through a tragedy with broke down shoes, now can we?!?". I just love her she is so funny and always makes me laugh even though she claims to be an "Ass hat"ha. You aren't to me and never will be ;).

Anyway, please don't forget Jude's baptism will be Saturday at 10am at St Michaels in Bedford. We will open our house up afterwards for anyone that wants to stop by. By the way, Mike noticed Jude was coughing a lot today and we called the pediatrician. I needed to contact them anyway for therapy referrals. They were so sweet and said bring him in asap! Turned out he simply had an ear infection so we will get that taken care of. The pediatrician said Jude's lungs were "Crystal clear" which made us very happy. After the doctor Jude and Mike came by to visit me at work since the doctor is less than 5 mins from my office. I smiled very big when I saw them come through the door. Our wonderful neighbors watched Em again for a little while until Mike got home.

So tomorrow I head back to work again. I will do all I can there, and at lunch work on more classes and benefits for Jude. To earn money for Jude's bills, and to keep Mike at home, my adorable hubby, decided he is giving up his Cowboy tickets I got him for our anniversary. I had gotten him the tickets to the very last game at Tx Stadium. He said Jude is more important, and I think that is so sweet. We are HUGE Cowboy fans, and I know it means a lot for him to take that step. I argued, but it was not worth it. He said he wouldn't enjoy the game anyway, and we cannot take Jude there and be in the cold. We are doing just fine so don't fret...I am just showing how dedicated he is to his tiny son. Makes my heart MELT! So he will be putting his 2 lower level tickets up for auction on ebay if you know anyone interested. They even come with a parking pass.

I know Mike and I will be fine! Throughout this long experience (we hope it will be long) we will still be passionately in love. A lot of people are in love, but we are passionately in love and I am thankful for that.

Good night all


PurpleQuilterQueen said...

Stay strong! Can't wait to meet the little trooper at the baptism Saturday! Jude is very lucky to have had God select you and Mike to be his parents. Best of Luck!~ Jennifer

Mara said...

Jen- the state program does bill your insurance.We have it for our daughter and have not had to pay anything out of pocket. We are going through Easter Seals ECI. Here in Austin we also have any baby can which offers programs. I have some friends in your area and will check with them to see if they know of some programs to help ! Keep your head up and be strong !

NanNa Teresa said...

Jennifer, just wanted to let you know that Jude is in our thoughts and prayers. I don't know if you know who he is or not, but Coach Gene Stallings is from Paris, and he had a special needs son named Johnny. There is a lot of reading material about Coach and his son and he even wrote a book about Johnny that you might enjoy reading. Stallings (1997) book, Another Season: A coach’s story of raising an exceptional son, written with the help of Sally Cook, details how his son changed him and his family in powerful and positive ways. It is book that has been recommended many times to fathers just coming to grips with the reality of having a child with a significant lifelong disability. It is a book that has helped some new fathers of children with disabilities embrace the experience, rather than flee from it. There are lots of books by mothers talking about how this changed their lives but very few for fathers, and some dad’s seem to need to hear a story told by a sports legend before it begins to sink in. Here is one of his quotes about Johnny: “ I prayed to God that He would change Johnny, but He changed me,”Coach Stallings once said in a speech. He added that if God offered him the choice of going back and having a “perfect” son without a disability or having Johnny, “I’d take Johnny every time.” Here is just one of the many tributes that was written about Johnny when he passed away this summer: Johnny was buried at his family farm this summer in Paris and his family still lives here. I just hought you and Ron might find some inspiration in some of this reading. Our thoughts and prayers are with all of you and please give Emily a hug from Alyssa. NanNa Teresa

NanNa Teresa said...

Ooooops - I meant you and Mike. I'm at school and a kid named Ron walked up in the middle of this............ Sometimes my hands go faster than my head. NanNa Teresa

PurpleQuilterQueen said...

Hi Jenn! I just wanted to respond to the post from NanNa Teresa. I also know Coach Stallings and his son Johnny. He is on the board of directors where I work and we often got to see and visit with him and Johnny. They are both an inspiration. Johnny will be much missed. Jennifer