It's that week..

It is definitely that time of year.. it didn't hit me until about mid-day yesterday when I started to become very agitated, sensitive and somewhat irritable.. just figured it had a lot to do with getting the kids ready for school & the day-to-day hustle but it dawned on me like a flash of lightning..this is the anniversary week of Jackson's accident. It will have been 8 years ago on Friday that his accident happened. 

I remember feeling like this, in the past, during this week but not at the VERY beginning of the week.. Ugh~  I really try to not think of the coming day with negative connotation and I wouldn't characterize my feelings as such. I mean our son survived the unthinkable and is a shining light in this world ... the feelings are just more emotional and raw. I'm realizing that I need to give myself a little grace and put all my faith in God, especially during this week. He will guide me, nurture me and continue to build hope within me. 

I was asked several months ago to give a speech at Children's Hospital for their nurses conference this week. I had agreed to do so thinking it would be a perfect way to celebrate Jackson's journey, especially a day before his anniversary. Lets hope I was right and get through it without blowing my nose in the microphone or getting mascara all over my blouse. :) I'm truly excited to share his story to a group of nurses. We have so much respect and admiration for what this great group of professionals do on a daily basis.   

Jackson is absolutely the strongest little guy ever! He has a spirit that is unlike anyone and the courage to take each day with happiness, laughter and a smile. I learn more from him everyday than I ever thought possible. He is a mirror for ALL of us to emulate. He continues to grow stronger everyday and I am so proud to be his mom. 

I'm sure it doesn't help that my baby is starting high school as a sophomore tomorrow and Jax will be in 4th grd! Both boys are looking forward to a new and exciting school year. Jackson has become Mr. Independent and somewhat stubborn (he gets that from dad obviously) so he may give his para a run for her money. :)

Brendan had the best idea over the summer. He asked me if he could have bracelets made for Jackson, absolutely! He came up with the design, concept, colors, text, etc. They turned out great! I truly feel like this is part of his healing process and paying tribute to his brother. He is selling them as a fundraiser for the Pikes Peak Challenge - please email me if you are interested in purchasing any. $3. per bracelet or 2 for $5.00 - 'No Excuses' PERFECT, you will never hear an excuse from Jax as he approaches difficult situations! 

Thanks again to all who continue to follow this slacker-blogger. ;) I appreciate your encouragement, love and support!

With love,
Tina

Long awaited update

I promised an update; it is just happening much later than I planned. Sorry..  Jackson has been doing well since being home from the hospital. He enjoyed his post hospital stay in our room for about a week after being home. He couldn't understand why he was being "moved out" after he had gotten so comfy w/ his mattress in our room. :) He told dad "no move out, me stay." That boy sure can talk in sentences when he is motivated! 

We will be planning a swallow study soon, just to make sure everything is the same with his swallowing of multiple types of drinks, w/ and w/o straws. 

Since being home he has been weened from one of his three anti-convulsant meds, this is a big step for him since his hemispheretomy! We celebrated at... you guessed it Ihop. :) Praying all continues to go well and he remains seizure free. 

We have many appointments approaching in May - rehab doc will be up first, Jackson's walking has been going well but when he stands he throws back his left knee & hip which is creating a different gait pattern.. we will see our PT this week and I'm sure she can help us to adjust this issues.. things are ever evolving as this kid grows and boy has he done a lot of that lately. He's almost as tall as me, ok that may not be saying much, but he is close. ;)  He also has an appt. with the epileptologist this week. 

We were blessed to get to see one of our favorite doc's a few weeks ago. Dr. Grabb is the neurosurgeon who performed Jackson's initial craniotomy and is an amazing doctor. Unfortunately, he will be moving to Kansas to work at their Children's Hospital, lucky for that area, sad for Colorado Springs. What do you say to the man who saved your son's life? Thank you just doesn't seem to be enough.. we got him a pocket watch and had it engraved. That is one person we will never forget. 

Thank you again for those of you that continue to read our blog. I need to catch some sleep before tomorrow.. it is IEP day, say a prayer that we all walk out with a smile. 

Tina 

Spring illness

Hi all, you know it has been awhile since I posted when I can't remember my own blog site. :/ I always think of posting and wanting to share with you all many of Jackson's great milestones but then life gets busy and I'm in bed way earlier than I usually plan. But today is different, I do have some "extra" time as we find ourselves once again in the hospital.. . It really is difficult to go from doing so well (Jackson health wise) to being on oxygen and admitted in a quick amount of time.

Jackson has come down with what looks like pneumonia. It started as an ear infection and led to a nasty cough w/ the requirement of oxygen within hours. He is always such a good sport but this admit was particularly difficult. I think he definitely understands what the word "hospital" entails, as great as the staff has been in the past and the miracles that have happened here, it is still just the word that can cause a small thorn in your side. While waiting to get things rolling in the ER, Jax was crying "Mom, me home now" very loudly and with gusto .. this lasted for about an hour and broke my heart piece by piece. Eric and I tried every negotiating tool we could but he was on a mission to go home. I absolutely hate to see this little guy go through more illnesses. Sorry to utilize the blog as a venting place but tonight that is what I'm doing.. sigh. I'm running on approx. 3 hours of sleep over the course of 48 hrs, I think I'm border line zombie at this point.

It is hard and I feel the same old anxious feelings coming out of my bones.. as many times as we have done "this", you would think I would have it down pat. That is not the case. I can admit that I'm not good at the hospital/illness life and it brings me to a negative place. I'm trying to get better at "this" and maybe one day I will.. but until then I continue to be reminded of how resilient and strong Jackson is, he is one of a kind. I also have to praise his brother. Brendan is nothing short of a wonderful big brother and supportive kiddo. The older he gets the more sense all this makes to him and he really does his part to make this situation more bearable for everyone.

I have been following a blog recently and it was written by a very courageous mother of four who had terminal cancer. She passed away this week and we send many prayers to her sweet family. She really focused on finding grace and Jesus, even in the difficult times.  I found grace today and thought of how precious her words are.. we had a visit from an elderly gentleman who is a volunteer at Children's Hospital, as he walked in the room he could tell Jackson wasn't feeling up to par and asked if he could tell him a story.. Jackson quickly said yes and the man told him the story of the Ugly Duckling.. he reminded Jackson that no matter how different we are there is always something beautiful about us and not to listen to the negative things but focus on the positive. It was really touching and reminded me that even in the difficult times there are signs of beauty.

Thank you to all of you who are still following this blog. Again, I apologize to write in the difficult times but I promise to post some of the great times soon.  Please pray, our almighty Team Jax, for quick healing for Jackson.

With love,
Tina