Living The Lessons...The Best I Can!

I have always said that Sam will teach me more than I will ever teach him.  For those who have never experienced life with a child with special needs you may question how that can possibly be.  Our children teach occasionally with words but more often with the way they live, how they handle challenges, their innate happiness even in the most demanding of times, the way they view life and the people around them.  I have always tried to teach all three of my children that when a challenge, unpleasant situation, or conflict enters your life...you have a choice.  You can choose to look for the blessing, learn something new about yourself...or be miserable.  I never had to teach Sam that lesson...he exemplifies it...he lives it.

Another lesson learned during my journey with Sam is to never judge...to never look at another human being and their circumstances and think I could do it better...because I have been on the receiving end of that type of judgement.  When I chose to utilize a program like NACD...I had skeptics and those who spoke out on my wasting money to help a child that had no future (after all Sam had both Down syndrome and a brain injury). When my child acted out and I chose to see that as a form of communication instead of just bad behavior I had those that doubted my findings.  When I chose to speak and mimic my child's attempts and beginning sounds of communication in an attempt to pull out more sounds and beginning speech I got more than a few strange looks. When I decided to homeschool Sam I also had a lot of critics from both those with and without a child with Down syndrome, we fight for inclusion and I was choosing not to include my child.  When I traveled to Baltimore to receive further orthopedic expertise than that available at our Children's Hospital I had naysayers in the medical community and others who felt the treatment was too extreme for a child with multiple special needs. Researching and choosing to use alternate methods of medical care for Sam has caused people to question my intentions.  Soooo...I pray a lot...and I follow my gut and I do what I feel is right for my child.

Through our numerous medical emergencies I have learned a self-imposed calmness.  Sam watches me, Sam learns from me, Sam looks to me for guidance in every situation.  My actions speak so much louder than words.  The families that follow my blog that have a child with Autism can probably directly relate to this.  When we are in a medical emergency, I try to get Sam to focus on only me and what I am saying.  I speak in quiet, calm tones and my body language is calm and reassuring. My voice is monotone and my expression is calm confidence.  It takes only a second for Sam to see me tense up before he begins to do the same, if I escalate he escalates more, if I cry or raise my voice he becomes upset, frustrated and will no longer cooperate.  So much of any situation with Sam is a direct reflection of my own words, actions and body language.

Now I don't want you to think for even a moment...that I'm perfect at implementing each of these lessons.  I prefer to think of myself as a work in progress.  Even when my actions are acceptable...my thoughts still want to fight accepting the lessons learned...I am after all human. I like to think of this process of coming to terms with my lessons learned as a shaping or development toward the person God would like me to become.  Of course...lately...I think he's been hammering the heck out of me and my most recent couple of weeks seems to be following suit.

Right before Sam and I left for Baltimore my 16 year old daughter went to her first day of school and then ended up in the ER that night being diagnosed with Mono and a bladder infection. Not the best start for her junior year of high school.  I picked up her prescription, took care of her for the first couple of days she was home but then had to leave for Sam's check up in Baltimore.

I packed up my suitcase, notified the school and made arrangements, went over everything with Jeff and my sister in law, assured Danielle I was just a text or phone call away and headed to the airport.  Travelling with Sam is always an adventure.  Picture me at the airport, getting out of the car and grabbing my airplane backpack which includes the must haves (fully charged IPad, gluten free snacks, Sam's medical/therapy reports, Sam's inhaler and respiratory meds, Sam's stress ball, Sam's sweatshirt and I throw in a snack for me, my sweatshirt and a magazine). I open the trunk and pull out Sam's wheelchair, walker and our suit case. Over the years I have learned how to become a pack mule.  I throw the back pack on, pull the suitcase on wheels handle up, slip the walker over the handle and proceed to push Sam through the airport with one hand while pulling the suitcase/walker combo with the other. After maneuvering our caravan on/off elevators and around various obstacles we arrive at the check in area. Sam begins a meet/greet with the attendant and I place our suitcase on the scale...keeping in mind Sam's need to push things standing up over I quickly face him in the opposite direction and get our boarding passes. One less item allows me to now push the wheelchair with both hands while hanging on to the walker with my thumbs. The entire time we are walking through the airport Sam is smiling and greeting every person we pass "Hello Lady" "Hello Man" "Hello Boy" "Hello Girl" "Aww Cute Baby" and I smile and greet them also.

We arrive at Security and if it is a good day we are ushered to the shortest line.  I have to remove Sam's shoes, my own, unpack the IPad, place the backpack in a bin and then with a smile push Sam toward the attendants explaining that he can not walk through on his own.  This gets me the "deer in the headlight" look.  Extra security is called in and Sam is pushed to a different area after I reassure him that I am right behind him. I smile as I walk through and collect our items and join Sam in the secure area.  After Security determines their protocol I help to walk Sam through the additional scanning, potential pat down and surrender his wheelchair and walker for additional security checks.  The Milwaukee airport is fairly easy to get through, not so at our destination airport of Washington DC.  I'm not going to tell you that I don't dread getting Sam through security because I never know what the protocol will be or what they will expect of Sam.  I am a firm believer in making sure that our air travel in this country is safe so I choose to smile and cooperate in an effort to help Sam do the same.

Once we are through security I need to make sure that Sam's walker and wheelchair are gate checked and have the proper tags and then we settle in to wait for our airplane and our next potential challenge.  Every airline's boarding policies are different...after both good and bad experiences...I now have only one boarding policy.  Sam will board first, before 1st class, not at our designated time as referenced by our zone and not when someone else decides it would be a good time.  Been there...done that.  Sam's ability to walk unassisted is limited and when he is moving, stopping really isn't an option unless it includes sitting.  I have had first class passengers block the aisle as we are boarding, I have had people place their bags in the aisle blocking Sam from his seat, I have had people's feet and various body parts causing hazards for my child who's only focus is to get to his seat and sit to relieve the pain. I have had people judge my child as rude because he has pushed them out of the way or asked them very loudly to "MOVE".  If that person had the pain and discomfort Sam experiences when walking without assistance I think those two actions would be the least of their worries.  Sam when seated is a wonderful traveler.

We had a "It's a small world" moment when at the Washington DC airport I began talking to a young girl who just happened to be the niece of a dear friend who also has a wonderful young son with Down syndrome.  We also had a few "kindness of strangers" moments when I met a woman on the car rental bus who really enjoyed meeting Sam and a man that was kind enough to help me load and unload Sam and all of our items to get to our car rental.

I had explained to Sam numerous times where we were headed and why...and yet in Sam's single track mind...he had decided we were going to Florida.  You can imagine his dismay when we arrived in Washington DC and there were no palm trees. In order to help alleviate Sam's anxiety about why he is coming to Baltimore I planned some fun events around our stay.  When we arrived we met up with Jeff's cousin Shelly and her two children for a fun time at the Aquarium.  Now usually...the Aquarium would be a hit with Sam but I did mention Sam's one track mind...he was still a little angry that we were not in Florida. Sam would push away from the exhibits and after several attempts to correct his behavior I could tell he was digging in his heels so I begin to model correct behavior and ignore his attempts to escalate.  I found the perfect spot for Sam behind a concrete pillar, he pushed back and could go no further, being a smart child he quickly realized his strategies were useless and he actually began to look at the fish, sharks, and sting rays swimming in front of him.  We then went to see the dolphin show and Sam seemed to enjoy many parts of it but he didn't really lighten up until we got to the restaurant and then he sort of got delirious.  The real Sam made an appearance when we left the restaurant and stopped to watch a street performer.  He was interested, engaged and enjoying the show.

We then headed to the Hackerman Patz House which is where we stay in Baltimore, right across from Sinai Hospital.  We had a beautiful large room and Sam and I were happy to settle in for the night.  It is a beautiful home away from home and we adore seeing Amy who is the fountain of knowledge on where to eat, what to see, and how to get to places.

After getting Sam up and showered, dressed and completing our stretches and exercises we headed over to the hospital for breakfast.  After breakfast we made our way to our appointment in the orthopedic wing.  Our appointment was at 11:00 and we arrived at 10:55 as instructed.  We first heard that Dr. Standard was going to be late and our appt. would be delayed an hour or two.  Fifteen minutes later we heard that Dr. Standard would not be coming in at all.  My first reaction was to say "but we flew from Wisconsin to see him" and then I remembered how I often wondered what happened when a high profile doctor had a family emergency. We learned Dr. Standard's wife had their baby on Saturday morning, one week early and the reinforcements (also known as the in-laws) had not arrived yet.  On top of that one of his other children was spiking a high fever and needed to go to the pediatrician.  Being a Doctor had to wait because being a Dad should always come first.  Soooo....we were disappointed but if there is anyone that understands "life happens"...it's me.  Sam would have his x-ray and we would see Chris, Dr. Standard's PA. Sam felt the need to yell a little before getting on the x-ray table but once he got on and figured out it had a soft pad he pretty much settled in.  The x-ray was completed and we returned to the waiting room.  And we waited and waited and waited and finally got called into a room where we waited some more.  I could see the stress Dr. Standard's absence caused on his staff from Anne, to Marilyn, to his nurse and I was only guessing the stress Chris was now experiencing so Sam and I prayed for Dr. Standard and his family, for the staff, for the parents who's disappointment would be greater than ours and for patience, guidance and understanding for us all.  I began to find a blessing...Sam was calm, Sam was okay with waiting and Sam was patient...not typically the words I would use to describe Sam Mayer and especially while in a medical facility. I strived to reflect his example...also not easy for my "A type" personality.  At 3:00 p.m. Chris finally came into our room looking tired, a little frazzled but with a smile on his face. During the time we waited I had ample opportunity to write out my questions, our current situation and the concerns of Sam's therapists.

When we started the journey with Dr. Standard and I heard from other parents about their child's results after treatment I began to have hope again.  When I met Becca and her family, especially her Mom Marge, they helped me come to the decision to go forward...that glimmer of hope grew. My analytical side knew that Sam's Perthes was in a late stage, that much damage had been done due to over 100% collapse and that his situation was unique...but I also believe in miracles.  I needed all of that to get through the external fixator process along with my faith in God.

I wanted to come on my blog and write how Sam was that miracle story, how Sam defied the odds and is now fully mobile and the effect of Perthes is no longer a problem in his life.  But that is not what I am here to do.  And yet again, I have a choice to see the blessings or to be....miserable.  We are definitely in a better place than when we started with Dr. Standard. Prior to the external fixator Sam could not move, he couldn't get out of bed without narcotic pain medication.  His first surgery had done an excellent job in keeping his hip contained but he still had significant pain, zero mobility and a daily regimen of narcotic pain medication and muscle relaxers.

Now Sam is able to walk throughout the house with his walker and sometimes unassisted. He has regained the independence of being able to get his computer, food and use the bathroom without assistance. For my friends of children whom are wheel chair bound they can vouch for the simple blessing of movement...being able to transfer, any type of walking with or without aid, re-gaining independence and the freedom that comes with the ability to move.  Sam's movement is completely without the use of any type of pain medication. We are blessed!!

Sam's unassisted walk is in one word...ugly.  His hip is hiked up as he walks on his tiptoe on the left side, the limp is severe and he seems often times in pain.  We also hear at times a very loud audible click coming from the left hip.  Here is a video for his home program to assess his gait.

No he's not walking everywhere, running, jumping and working on his next triathlon. No our story is not going to have that perfect ending...unless God steps in and miraculously heals Sam's hip. Luckily for me...I believe in miracles.  Sam may improve his gait over time but he will continue to have a physical disability. The external fixator helped but will not completely alleviate the effect of Perthes. Sam will continue to need a walker, Sam will continue to need a wheelchair and sometime in the future Sam will need either a hip fusion or hip replacement. It is a matter of time and how long it takes the hip to break down or become too painful again. This surgery bought us more time before the next one is required.  More time to travel on a family vacation, more time to go on homeschool field trips, more time to work on moving Sam along in his academic goals, more time to wake up and enjoy each and every pain free day...as much as we possibly can.  Sam will probably not regain 100% of his mobility, Sam will not run, skip and jump like other 12 year olds.  But with all that said...I am still thankful for Dr. Standard and his promise to see things through...I am thankful for Sam's ability to transfer and walk with the walker...I am thankful for the new little bundle of joy that may have changed our appointment but will bless the Standard's lives...I am thankful that Sam's pain has been reduced and he can swim with ease again...I am thankful for more smiles and less tears...and...I...am...thankful...for...more...time!

When we left our marathon appointment of 4 hours I was at peace, calm and looking forward to what that time...time without surgery, time without rehab, time without narcotic pain medication...would allow us to do.  So the next day we got started.  We headed to another National Park in our quest to visit them all.  This time we drove to Great Falls National Park in Virginia.  Record heat in the area was going to make our visit short and sweet but we would see the Great Falls of the Potomac River.  I knew right away we made a good decision when the Park Ranger allowed us to enter for free just by mentioning Sam's National Park Pass. Yep, another blessing!!

Thankfully the overlooks were very easy to get to because pushing Sam in 97 degree weather is never a lot of fun. Out of the 3 overlooks I was thrilled to see that 2 of them were handicap accessible.

The first overlook gave us a beautiful view of the rapids and if you know Sam...you know he loves anything that resembles a waterfall.

The view the other direction was just as beautiful.  A nice time to stop and thank God for our safe travels.

The second outlook had this wonderful plexi-glass viewing area for small children or people who use a wheelchair.  Sam was mesmerized.

Sam had a great time watching the kayaker works his way through the rapids.

The kayak was going upstream...hmmm...facing his challenges, seemed to fit our theme???

I love taking Sam to the National Parks because it seems to give him peace, thoughtful reflection and always, always a time to enjoy the natural beauty that God created all around us.  We also enjoyed driving the Georgetown Scenic Byway.

Due to the heat we decided to take our next activity inside.  Ahhhh...air conditioning another blessing...both to cool us off and since my husband owns a heating and air conditioning business...allow us to take this wonderful trip.  We decided to head to the movies for some relaxation, A/C, popcorn, soda and hopefully a great movie.  We drove to Hunt Valley upon Amy's recommendation.  I explained to Amy that I'm a country girl, live in a rural area and only have one major highway near us. I wanted to go somewhere away from the city where I could park in a parking lot instead of a parking garage and I wouldn't get lost or end up going the wrong way down a one way.  I'm pretty sure if you live on the East Coast you have to love highways, expressways...and a lot of them...all seemingly going to some place more crowded.  Anywho we arrived at the theater and chuckled that we were the only ones in our theater. We decided to sit in the middle to enjoy all the space.

Because I normally fly by the seat of my pants, I didn't really plan on a particular time to arrive.  We ended up being in the theater 45 minutes before the movie was to start.  Popcorn, soda and A/C...not a problem...much better than our last wait which didn't provide us with any food or beverage.  We enjoyed the peace and quiet and waited for the movie Planes to begin.  Now remember we are in a movie theater at 4:00 on a school day for a PG movie...yep no one came to join us.

Sam enjoyed being the popcorn bully, offering me a piece or two at a time.  When I asked for the bucket I was allowed to take one handful before he requested it back.

But he was happy and we both could relax.

However when the movie was supposed to start and we still had this on our screen I had to go to the lobby and ask them to turn the movie on.  They forgot that there was anyone in the theater. Once the movie got started Sam loved it.

The heat remained a factor the next day and Danielle was not feeling very good so I decided to try to take an earlier flight home.  When I called Southwest they told me we could get on the 2:00 p.m. flight so we headed to the airport.  We dropped off the car and we were thrilled that Budget drove us right to our ticket counter.  The thrill ended when the Southwest agent informed me that to change our tickets would be a $400.00 upcharge. Deep breath...I kindly declined since both tickets didn't cost me that much and we decided to wait at the airport (since our rental car was now turned in) until our original flight out at 5:00 p.m.  Yep that is 5 hours in the airport. Oh joy!!  It was too early to check in our bag so we moved over to the seating area and I noticed a huge amount of security and then it hit me.  I was flying out of Washington DC on 9/11...what was I thinking???? These were not your normal police officers...they looked you up and down from head to toe and they wanted you to know that they were looking at you.  Of course Sam thought it would be a great time to do some meet and greets which I quickly discouraged but a few couldn't help but smile at him anyway.  1:00 o'clock came around and we were able to check in our bag and now we were off to security.  I have mentioned how much I look forward to getting Sam through security and the fact that we were detained for 1 1/2 hours the last time we tried to fly out of Washington DC, haven't I???

As we headed to security the guard was kind enough to usher us over to the business traveler/employee line because it was shorter.  I smiled and thanked him and thought "you may regret that move in the near future".  I removed Sam and my shoes, pulled his IPad out, put the back pack in the bin and made it to the walk through scanner.  They asked me "Is he able to walk unassisted"  I said "No", they asked me to walk through and then the security guard decided to bypass my answer and ask Sam to get up and walk through....as if he would listen to her and just walk through.  I tapped her on the shoulder and said "He's not going to come to you, he doesn't know you or trust you".  She responded "Well, she can walk through to you".  I got stuck on the reference to "she"...honestly what part of looking at Sam makes you feel he's a girl??? I said he will probably grab the side to steady himself, she said "Well, then she will alarm".  Again "she"???? Sam stood after a few very loud audible "NO's", now just picture that I am trying to get a child that struggles with auditory directions to stand and walk on an uneven surface while every one in the area turns and stares. Yep, anxiety was hitting Sam and me big time.  Sam stood and grabbed on to the side (like I said he would) alarmed and the security guard finally decided we needed to go into the other area of security which is where I wanted to go right away...but what do I know.  A second security guard began to push Sam's wheelchair and as Sam was beginning to object I stepped in, got down to Sam's level and explained that I am right behind him, getting our stuff and the security guard will wait for me. Sometimes you just have to make instructions clear to both parties. I gathered our stuff and followed the security guard to the other personal check area. I already knew the security officers line before he said it "we need to call our superiors regarding the proper protocol". Part of me wanted to say "because you have never had someone with special needs come through security before".  But when it comes to National Security, especially on 9/11, I cooperate fully. I explained the situation to Sam and told him "No worries, Mom is right here". He was happy to touch the guard's badge and say "Hello" to everyone that came through. About 15 minutes later the "powers to be" come over and the usual questions are asked.  "How old is he" "12" "He alarmed?" "Yes, because he touched the side of the walk through." "Are you travelling alone?" "Yes, just Sam and I" "He is your son?" "Yes, I am his mother" "Has he alarmed before" "Yes, he has metal in his hip" "Please wait as we do some further checking. The guard will wand Sam and his wheelchair, are you okay with that?" "Yes, that's fine". They used the pad to check for explosive agents, wanded and I asked "Do you need him to transfer to a regular chair so you can check the wheelchair further."  The security guard told me "You are very patient and cooperative, thank you."  He went on to tell me about someone else with a child with special needs that came through in a similar situation and was really rude.  I explained that I am patient because Sam needs me to be and I am cooperative because I know safety is their #1 concern. I believe our children need to be checked out the same as any other traveller. I know some parents will not agree, but in my mind if it becomes easier to get a child with special needs through a United States airport it opens up the chance of our children becoming targets for terrorists. After some more phone calls and checks we were released to travel on to our gate.  Sam and I thanked them and moved on.

I found some gluten free items Sam could munch on and we settled in.  I was happy to see handicap accessible seating which allows more room for a wheelchair, walker and equipment without blocking everyone's path. I was thankful Sam's IPad was fully charged and I had something to read along with me. As we got closer to our departure time I decided to gate check Sam's wheelchair and walker.  Why you have to do this process when you get your boarding pass and again at the gate seems kinda crazy to me but we comply.  I was amazed at how many people tried to skip in front of us in line...funny...you don't see the boy in the wheelchair???  Hmmm...made me wonder how people that are wheelchair bound make it through the airport on their own.  We got everything tagged again and headed back to our seats to find that the airport was really busy now and 3 well dressed business men had taken over the handicap seating. I took a deep breath and decided to push the envelope.  I pulled up to the side and asked the gentleman on the end if he could move over so we could fit Sam's wheelchair without blocking the aisle.  He looked at me annoyed but picked up his things and moved.  I brushed it off and once again settled in. The displaced businessman continued to watch us and it wasn't until a woman in a wheelchair came up and said "I'm so happy they have handicap accessible seating here, it makes travelling easier."  The man finally got up, looked at the back of the seating, saw the handicap access symbol and quickly moved away from us. Another teaching moment...completed. Now those who know me, know I have a very sarcastic sense of humor...don't think for a moment that a comeback did not enter my mind such as "I'm sorry I didn't notice your handicap, is it cognitive??" or "I imagine carrying that suit bag has fatigued you way beyond my pushing this wheelchair, while carrying the walker and lugging a backpack?"...by grace alone...I kept my mouth shut and simply smiled.

As we got closer to departure I noticed the lack of a plane at the gate. The announcement came shortly after that our plane was in route but we would probably have an hour delay. Deep breath...okay, we can do this. I began to think about how blessed I am that I didn't bring Jeff or Ben on this trip, neither of them are known for their patience or ability to "go with the flow".  There is a good chance one or both would have been arrested after the hospital wait but definitely, DEFINITELY after spending 6 hours in the airport with Sam.

When our plane did arrive I decided not to take the chance of leaving it up to the airline to determine the boarding policy.  Sometimes they allow those that need additional time/help to board first, sometimes they cater to their first class travellers and sometimes they stick firmly to a zone boarding.  After spending 6 hours in the airport I knew we were boarding first.  Sam's hip was going to be sore and stiff from sitting for an extended time.  When he got up we had a limited amount of time to take steps before he would need to sit down. As I said before we have been on flights where 1st class goes on first and then blocks the aisle...mistakenly thinking Sam will stand and wait patiently...and instead he has yelled "MOVE" and pushed them out of the way. Yep, that makes us really popular. Other times I have had people put their carry on in the aisle or extend their feet or other body part...with pretty much the same result as before. So this time, I was taking charge and thankfully the gate agent agreed with me.

We settled into our seats and watched everyone else board.  The door was closed....we pushed off from the gate...and we stopped. No, no, no!!! After 15 minutes the captain came on informing us that we had been temporarily grounded due to weather to our west and would remain for approximately a half hour or so.  Sam grabbed his IPad (which thankfully still had a 40% charge), I grabbed my phone and asked Danielle if planes were crashing into buildings since I had already asked how the weather was????  After 1/2 hour we were advised to put away our devices and we began to move toward the runway.  Sam was already starting his "1, 2, 3....go", we were the next to the runway....when...the pilot suddenly turned the plane around.  NNNOOOOOO!!! Again our captain came on to let us know that we were next but they have again temporarily grounded all aircraft for approximately 20 minutes. He went on to say that they have turned off one of the engines to conserve fuel use. It was at this point I could not hide my reaction, I chuckled and said "Well that's reassuring, we may run out of fuel now." As if he heard me he corrected himself and reassured us that we had more than enough fuel to make the trip.  GOSH...THANKS!

I texted Danielle to let her know the new information and my husband thought it would be great to have her text me that I should remain calm, positive, patient and easy going...to which I responded "Bite me". Leave it to Jeff to bring out the best in me.

20 minutes later we were finally in the air and I couldn't wait to land in Milwaukee.  After waiting for everyone to deplane we were told Sam's wheelchair was at the gate and we could get off.  Another small, small pet peeve...would it be too much to ask that the wheelchair be opened and ready to sit in??? Deep breath and feeling blessed to be home.  We picked up our bag, made it on and off not one but two elevators in pack mule mode and found our car. Yes, there may have been a short audible scream upon finally sitting in my car with the door closed to which Sam replied "Mom stop it, go home".

I would love to tell you that the story, the drama which seems to be my life, ends there...but no...that would not be my life. Danielle due to her diagnosis of Mono is attempting to attend school half days, morning one day, afternoon the next before she comes home for a 5 hour nap.  On Friday she asked me to drive her to school in the morning, as we are driving she tells me that she has a rash on her arm that is really itchy and shows me a little patch on her arm.  I asked her if she used any new lotions or soaps but she hasn't.  I drop her off at school and return home to start working with Sam.  We just get started when she calls me on my cell and says "You need to pick me up right now".  I said "Now what?".  The rash had spread to both arms across her chest and was moving up her neck. I loaded Sam and headed to pick her up.  By the time she got into the car the rash had started to move down her stomach and across her back. I realized she was having an allergic reaction to something so rushed to Walgreens and bought a water bottle and Benedryl.  I had her take two tablets and hoped we had slowed it down.  Through out the day Danielle began to complain more and more about the itchiness and pain soooo....I called her doctor who advised just to continue using Benedryl.  By 6:00 she couldn't stand it any longer and was covered over 90% of her body.  These pictures are from when she came home from school, it got much, much worse but taking pictures at that point was not an option.

Sooooo....we headed to the Walk In Clinic after Aunt Wendy rushed over to watch Sam.  By this time, the small red dots had become angry looking and at 16 years old Danielle was appropriately freaking out a bit.  The doctor took one look at Danielle and said "Have you taken an antibiotic recently".  We explained that Danielle had been diagnosed with Mono and a bladder infection and had just finished taking 7 days of  Cephalexin.  He told us that she was having an allergic reaction to the antibiotic and could never take it again without the possibility of a life threatening reaction.  Oh joy!  He prescribed a course of steroids and explained that this was probably going to get a bit worse before it got better. Picture Danielle and I with that "deer in the headlight" look. Honestly....worse???  We picked up her prescription and some pizza and headed home.  She immediately took 6 steroid tablets and 2 Benadryl and I had resigned myself to understand that this was going to be a llloooonnnnggggg night.  To say Danielle was miserable is a huge understatement.  At 11:00 p.m. she was sobbing in her room in complete agony.  I remember reading and hearing the doctor say that cooling a person can help.  I opened the windows in her room and then I found our large cooler filled it with as cold of water as I could and dumped all our ice from the freezer in it.  I called Danielle downstairs and said "All we can do is try and see if it helps".  Danielle's arms were the worst, so she kneeled on the kitchen floor and submersed both her arms up to her armpits in the ice-filled cooler.  It stung terribly but I knew when she didn't pull out that it was beginning to work. What I wasn't prepared for was how long she would stay in the ice water...like 15 minutes.  She came out bright red but she had stopped crying and she seemed to have found some relief.  The icing continued throughout the night.  Danielle slept at the most for an hour and a half.  Now keep in mind she also has Mono so by Saturday morning she is again miserable...desperately needing sleep but unable to sleep because of the itching and pain.  On Saturday night the rash was still bad but it appeared to be receding.  She finally slept on Saturday night and today she is feeling much better, very tired...but better.

Sooooo this life...has been beyond crazy at times and I am still very much riding that rollercoaster as I come into the new week.  Along with everything going on I still more than ever miss my Mom, I miss my best friend and honestly the challenges that face me now could and should put me over the edge...and yet I am calm, I am positive, I am thankful and all of this I owe to the grace of God. I'm not strong enough to weather this tide, so when I went to church this morning and the Epistle lesson was 1 Timothy 1:12-17 "I thank him who has given me strength, Christ Jesus our Lord..."  I can only say "AMEN" and thank you for everything...through grace alone...I carry on.

Putting Things Into Perspective!!

Be prepared...this is going to be a post that will weave in and out of my thoughts, dreams and fears as I try to put things into perspective.  I have always been an optimistic person...or have I????  I have always held strong to my dreams and aspirations for Sam...or have I???  I have always placed my trust in God...or do I???

Here's the thing...on any given day I have good intentions.  I know what I should be doing and having been brought up as a Missouri Synod Lutheran I also know what God expects of me. Being the mom of a child with special needs I often hear "God only gives special children to special parents", "God never gives you more than you can handle", "God knew what he was doing when he gave you Sam"...to all of that I say "Poppycock".

God gives special children to average parents and then with His help and by His grace we try to raise them. And if I am being honest I succeed and fail just like any other parent...the difference is I have more chances and challenges each day with Sam to see just what I am going to choose to do...succeed or fail.  As parents we all have times when our children push our buttons or challenge us...the difference is Sam pushes harder, challenges me more and the real test is how I react.

Danielle might ask me a question and she will wait patiently for an answer...Ben would ask me a question louder and with more intensity and demand an answer...Sam would ask me a question, not wait for an answer, ask again and again and again with absolutely no understanding of non verbal cues, being patient, or actively listening for the answer.  Each of my children are so very different and each requires a different level of patience, compassion and understanding on my part.

Today was a failure!  I wanted to work with Sam but Sam did not want to work with me. Instead of being patient and positive I found myself getting frustrated, somewhat angry and choosing to give up.  We started our day with some stretches and Sam yelled "NO" during most of this time. Then I brought out the walker that he promptly pushed over several times before getting up to walk across the room to his recliner all the time yelling at me.  I brought out his reading which he struggled through requiring more intervention from me than is normally needed.  His math facts he decided to hit the wrong answers to hear the sound it makes further depleting my "we can do this" attitude. No matter what I tried it was met with resistance. I raised my voice at one point which just made Sam even less attentive and when he kept turning off his Ipad educational app I finally just walked away. I gave up.

Many of you might be saying "He had a bad day"..."He's going through a lot, give him a break"..."It is Easter break, what's the big deal".  Well, here's the thing...that is often how every day starts with Sam...the difference was my reaction.  Sam is stubborn...Sam is difficult...Sam likes to have his way and through these actions (as difficult as they may be) Sam is desperately trying to teach me patience, resilience, perseverance, grace, humility, compassion and challenging me to think outside the box, to try new ways, to press on, to press through...to succeed...and today I chose to give up, to fail.  Failing is easier, he gets Netflix, I read a book and he's happy...kinda.  I meanwhile wallow in my failure...my mind stretches to all the things he will never be able to do, how I've failed him, how someone else...really anyone else could do a better job with him.

Taking a day off is fine...but more importantly picking myself up by my bootstraps, praying for additional strength and resilience is really what I need to do.  When I was told Sam would never walk or talk because of his multiple diagnosis of Down syndrome and brain injury I could have gone with that, believed it, lived it and Sam would have probably never walked or talked but I chose not to believe, I set my expectations higher and Sam walked and talked, later than most but he got there.  Teaching reading to a child with Down syndrome can be challenging, now add brain injury, apraxia, dyslexia and aphasia...but even with all of that Sam can read. Our new challenge...Perthes Disease...has required 2 hip surgeries with another one coming in May and Perthes has taken most of Sam's mobility away.  As challenging as the external fixator has been for Sam's weak immune system and as much as I hate pin care the chance of saving Sam's hip and allowing him to walk again gave me the courage to get through.

Each of these challenges presented me with a choice to give up or to forge ahead. Each of these challenges and how I chose to forge ahead (NACD, homeschooling, out of state surgery) had it's supporters and it's critics.

Here's the thing...I'm Sam's mom and I take that role very seriously...some would say I'm a wee bit of a control freak.  Each of my children has presented me with parenting challenges and unfortunately none of them came with an owner's manual so I have allowed each of them to guide me on their journey along with a lot of prayer and request for guidance from God.  Ben has taken me on a rollercoaster ride of ADHD, Dyslexia and learning disabilities. He single handily changed my viewpoint on schools and education. Through Ben I learned the importance of letting a child pursue their interests, building on their abilities while working on their challenges. Ben began the development of my ability to be patient, persevere, to think outside the box, to understand how each of us is unique and to both cherish and challenge the differences.  Danielle built my reserve of compassion, my wit and humor. She gave me back my sanity. She made me laugh more, listen more and she will forever be "my little ray of sunshine". She is like a mirror image and reflects both my strengths and my weaknesses. And Sam...Sam is the child that demands a whole different level of parenting. With Sam I have had to become a teacher, PT, OT, Speech therapist, nurse, caretaker, friend, cheerleader, pulmonary therapist, social director, researcher, dietitian, catechism teacher and behavioral therapist.

Sam demands resilience!  When I raise my voice Sam shuts down.  When I show frustration Sam becomes equally frustrated.  When I am excited by something Sam has done he not only reflects my excitement but he radiates pride for me and with me. Each and every challenge Sam has encountered he does with grace. He adapts, he withstands, he rebuilds and he overcomes.  To effectively work with Sam I have to be at the top of my game.  I would love to say I can do that every day but I would be lying.  So this is where my trusting in God has to come in.  I have been reading the Book of Proverbs to Sam because it is full of wisdom.  It tells me the type of person God would like me to be and the actions I should do but I often fall short and being both human and a sinner and knowing that it is not my actions alone that will help me with Sam I pray and I trust in God. I can't heal Sam's hip...but I have faith that God can and will if that is his intended plan.

Yep, today I failed but tomorrow is another day and another chance to pick myself up and try to be at the top of my game.  

I know that life is not without it's difficulties and that with every challenge there are still blessings to be found.  I hope and pray that I continue to have the strength and resilience to wake up each day with the wherewithal to get through and to do it to the best of my ability and on those days that I don't...I trust in God to take over.  I have so many hopes and dreams for Sam, none of them are small or easy but together we can chip away at the tasks at hand keeping our focus on creating a life for Sam where he will be healthy and happy. I know that the dreams I have for Sam will change and develop as he guides me along and makes them his own and I hope that I continue to see the possibilities...to keep an open mind...to think outside the box and to enjoy the adventure. 

Tomorrow I will strive to stay positive, to encourage and not discourage, to emit a "can do" attitude, to look in Sam's eyes and let him know that I believe in him, have faith in him and that together we can learn anything.  I will strive to listen more and talk less, to participate and not dictate, to be calm, patient, attentive and fun. I will keep our windows of learning short and end each area on a positive to ensure that Sam feels successful and willing to continue. I will be resilient!!

Finding My Way....

To say the last couple of months have been difficult is an understatement. Deciding to proceed with another hip surgery and choosing a surgery that includes an external fixation device for a child that is immune compromised and then deciding to do that surgery out of state was probably one of the toughest decisions I have had to make in my journey with Sam.  Then a month later to lose the person who was my rock, my biggest supporter and Sam's #1 cheerleader was devastating.  There is not a day that goes by that I don't miss my Mom.  I try to support my Dad but can't even imagine what it feels like to lose the person you loved more than yourself and spent the last 60 years with.  Add to that the daily care that got completely side tracked with continuing issues with Sam's pin sites.  I am convinced that Sam's body just does not like the external fixator.  We have had infections, a large amount of granulation tissue, holes that seem to grow or split open just as I get them healed, creative pin care techniques which have included different wrapping techniques and the use of Medihoney, a granuloma, holes appearing in the split tissue above the pin site holes and a blackening of healed tissue.  Add to that Sam's issues with fever, severe constipation from his pain medication that we weaned him off of, digestive tract issues that include extreme amounts of output, being able to walk and then not being able to take more than 2 steps and you begin to get a feel for what these months have been like.  Sam has had good/bad nights, good/bad days and we have had a few times when texting/calling doctor's personal cell phones or having them do a home visit has been required. I thank both Dr. Steinert and Dr. Standard for putting up with my x-ray questions, pin site comparison photos and helping me get through all of this.

And yet...I am finding my way...in my own way...and in my own time...one day at a time...and sometimes one moment at a time.  I have days when I'm thankful just to crawl in bed at night and know that I made it through.  I attempt to wake up each morning...ready to face whatever comes my way.  Sometimes I'm successful and sometimes I fail.

The thing about grief that is really, really hard....is the finality. The knowing that the person you loved is gone forever and you are not going to see them or hear them again on this earth.  My heart has not come to accept the reality that my Mom is gone.  I can still picture what she would be wearing or I think I'm still going to hear her voice or see her with my Dad. It just doesn't seem possible that she was here one day and gone the next.

Taking care of Sam during these difficult 4 months of the external fixator is both a blessing and a curse. As much as I would like to just curl up into a little ball, stay in bed and let the world go by...I can't.  Sam has medications, nutritional supplements, transfer/movement, pin care and a diet that he requires my help.  Now that doesn't mean I don't find time when he is medicated, has gone to the bathroom and is enjoying his breakfast in his favorite recliner while watching Netflix to sneak away and curl up and crawl back into bed, or to take a shower and cry my eyes out or take Buddy for a walk in the woods with the snow mixing in with my tears. I have those moments too. Sometimes I curl up on my couch in my bedroom and open the Bible and read the first verse I come to hoping and praying that it comforts me and takes some of the pain away or that it is a secret message from my Mom or God telling me, guiding me through. Sometimes I pull out my Angel Catcher journal and try to tackle another page hoping that by writing I will work through the pain and grief but instead I find myself sobbing uncontrollably as I try to put my feelings into words.

Rationally I know that life goes on and we are to pick up the pieces and continue on.  I know that my Mom would want me to be the best Mom, best wife, best daughter, best sister, best friend, best Aunt, best cousin, best employee, best community member, best me that I can be and yet part of me wants to scream "Yeah Mom, but that's what you always helped me with."  My Mom was the person I went to, confided in, vented to and talked to.  She always made me feel better, stronger, she cried with me, laughed with me and always supported me.  My Mom was the type of person I could call at a moments notice when I forgot to check my calendar and ask her to watch Sam and she always said "Yes, no problem".  She was my respite care provider.  She has talked me through tense moments in the ICU, frustrating moments as I tried to figure out medically what was happening with Sam. She was there for me after Ben's accident, my father-in-law's passing, Danielle's eye surgery...always listening and comforting...listening and encouraging.  She was there to see Sam learn to walk, ride his bike and when he began to read and speak.  She helped me do Sam's NACD program with him so those moments would be possible and she and I were elated to break through the diagnosis barriers that Sam was originally given. She loved and believed in that little boy as much as I do.  Sam's multiple diagnosis, his medical needs, his vitamins and diet never phased her.  She never discouraged me from trying new things with Sam, she didn't judge or quickly jump to "do you think that's necessary or do you really think that will help?"  She never doubted for a minute Sam's true potential. She didn't see him as a child with Down syndrome, brain injury, Perthes, hearing impaired or any of it...she loved and accepted him as Sam.

How do you find someone to fill those shoes???  I can answer that...you don't...but the lessons she taught me ...the way she encouraged me...the things that I love and miss most about her is the legacy she left to me and I know she expects me to step up...step forward and do her proud.  It will take me a while to regain my strength, my stamina...right now I'm happy when I just get through a day and Sam and I go to bed healthy and okay.  Stress does terrible things to your health and Sam's decline has made me aware that I need to take care of me in order to take care of him. As Sam was going through a bout with fevers and pain his actions and reactions mimicked what we saw my Mom go through as she struggled and lost her battle with Sepsis. For a brief moment Jeff and I both wondered out loud if God took Grandma in order to get heaven ready for Sam. It's crazy what your mind will do when it is struggling with grief and stress. We both stopped and prayed. I spent most of that night on my knees next to Sam's bed watching him sleep, checking his temperature, monitoring his pulse ox and praying that we were wrong.  I was elated when he woke up the next morning with no fever and smiling even though that was the day of my Mom's funeral and I would have to say good-bye to my rock. When my Mom was in the hospital she didn't look at all like herself but the day of her funeral she looked beautiful, at peace and resting.  Sam even remarked that Grandma was sleeping.

Lately my thoughts have wandered to our next road trip...yes escaping is a valid response.  But interestingly enough they have also returned to my faith and Sam's future. My faith became established and strong many years ago while I sat in Children's ICU wondering and praying if Sam was going to take his next breath.  It was a time in my life...when life as it was happening...was too much for me to handle.  I had to put everything in God's hands.  I watched Sam stop breathing, I watched all his stats begin to drop, I watched the crash cart come flying into his room and I dropped down to my knees and pleaded that God allow him to live.  At that moment, with all that was happening I knew that God was the only person that could take control of that situation.

I felt that same desperation again when my Mom's heart stopped beating in the ICU at Aurora...but this time that prayer wasn't answered.  As I listened to them work on my Mom behind the pulled curtain and held onto my Dad's hand and listened to him plead with God that he would love and take care of Marilyn no matter what, just let her live and don't take her away from me...my heart broke.  I knew that what my Dad was asking for was not what my mother wanted, if she couldn't come through this and do everything she loved to do she would rather leave this earth and she did.

I'm not really mad...I'm frustrated, sad and a little lost but each day I know my Mom is pushing me, challenging me and guiding me.  I don't think the Angel Catcher Journal just showed up on my computer by chance, my Mom knows my therapy is my writing.  I don't think the link I clicked on that I thought was taking me to an article on "wound care" but instead took me to an article on "Little House Living" which of course turned my thoughts to Sam's future...was a mistake.  Just as I believe that my reading the Book of Proverbs to Sam wasn't by chance but instead had divine intervention.  Sam sitting quietly was my first clue, and when he said "Ummm...Mom, my sins washed" and he used his hands to show me away.  I repeated what he said and he said "Yes, Mom" and I cried.  Sam struggles with listening, auditory input, processing and he would normally repeat what he has heard but what I was reading was not about sins being washed away.  Sam saying that particular phrase was a complete, solid and pertinent thought and expression that definitely comes from the book I was reading but the thought process of pulling something like that out of a brain that struggles with aphasia and apraxia is miraculous in it's own rite.

My Dad called to tell me that Mom's peace lily that hasn't bloomed in years has 10 flowers on it. You're good Mom!  I know she is with me but I still miss her voice, her smile and her laugh each and every day. I hope she smiles as I pick up Dad each Saturday to attend church and go out to dinner. I hope she smiles as she sees me blogging again. I hope she smiles when Sam's external fixator finally comes off and he walks again. I hope she smiles when Wendy and I plant all her flowers this spring. Keep guiding me Mom, you always said "We can do anything we put our minds to" but remember sometimes I need a push. In your honor...Wendy, Martha and I will wear a necklace of hearts with your big golden heart in the middle and the necklace's inscription will remind us that:

"The love between a Mother and a Daughter knows no distance".

Home!!!

I have often traveled on my summer road trips and always feel happy and comforted when we return home. But I don't know if I can describe the feeling I have when returning home after spending time in a hospital  or medical facility.  As a writer I am always noticing the people around me and I wonder and often times create stories for them in my head.  The same thing occurs when I see certain homes as I travel, I picture the family and life within the home.  Hospitals fatigue me...I feel trapped and controlled.  You are in a place you don't really want to be and the circumstances that occur around you are usually things you don't want to have happen and yet you seem to have no other choice but to ride along.  I remember a time when I felt so fortunate to have never had to step into Children's Hospital...but then Sam decided to change that.  I was always amazed at how my life would seem to stop when I entered that facility...I would look out the window and see all the people rushing back and forth still engaged in their lives, their jobs, their world and mine was only in that room...and I was on the inside looking out...wanting to be out with them...wanting to be anywhere but here.  But then I would look at Sam and I would know that I am right where I need to be...at that time...and for this purpose.

It's funny how as I get older my perspective is constantly changing, reforming and reshaping from each and every new experience.  I'm not the same person I was when I was young...my thoughts, ideas, goals and dreams are continually changing.  If you have a Facebook account you probably receive daily inspirational quotes or ideas...random stories or messages to stop and make you think...some you read and relate to immediately others are tucked into your subconscious until in my case they spring forth at just the opportune time.

I am not going to sugarcoat my latest journey with Sam.  I'm not going to tell you that it wasn't and isn't difficult, often times heart wrenching, that it didn't age me and cause me to re-prioritize my life yet once again.  It was all those things but as a person of faith I know that in any situation there are lessons to be learned, blessings to be seen and joy beyond the tears.  So many things on this journey would have been unbelievably difficult, could have caused me to be bitter or angry if that was where my heart dwelt and my life's experiences hadn't already shaped the person I have become.  I have long since learned that any situation can be made more or less difficult by how you choose to perceive and act in that given situation.

Unlike many people...I have one of the best teachers in the world.  I have Sam and I try to live by Sam's example.  As I prepared for this journey I began to plan for the worst outcome, Sam being in the ICU after surgery, staying in Baltimore for a month and additional medical care when we returned home to deal with Sam's sensory issues and the daily need for pin care which includes unwrapping, removing the old sponges, washing away any discharge and then replacing the sponges and wraps.  But that's where Sam steps in...and God...and they both teach me that I don't know everything, that I'm not in control and my best planning may not be needed.  Sam did not go into the ICU after surgery but instead went to a regular room.  He did need enough oxygen at one point to warrant the ICU but his willingness to work on his breathing was enough encouragement to keep him in a regular room.  Thank you God!  We didn't need to stay in Baltimore for a month and instead returned home after 17 days.  Thank you God!  I adjusted to the process of pin care (can't quite say the same for Jeff, it makes him a bit squeamish) and Sam is tolerating it better than expected so  additional medical care at this time is not needed.  Thank you God!

Our time at Sinai Hospital was a positive experience once we got past the first couple of days of trying to figure out the right mix of pain medication for Sam.  I felt sorry for our first nurse who had to ride the rollercoaster of pain, frustration and Sam's continual pleading to "Please help me, Mommy".  His pleading drove Jeff and I into desperation mode, it is the first time I have ever wanted to call 911 in a hospital.  I felt so helpless, so utterly useless as I tried to comfort Sam as he and I prayed for God's help.  Jeff and I were both physically and mentally exhausted and as much as I try to model Sam my human nature came through and I was angry, frustrated, tired and my thoughts were anything but thankful.  And then Sam turned another corner, the medication began to work and he began to relax, sleep and heal.  I repented for my thoughts and feelings and thanked God for answering our prayers. When I said to Sam "have I told you lately" and he replied "I love you"...I knew we were in a better place.  Sam began to say "Please" and "Thank you" to the nurses and doctors and they began to see the little boy that has captured my heart and changed me as a person.  We became used to the hospital routine, I was responsible for the day shift from 7:30 am to 8 or 9 pm and Jeff, Randy & Ben handled the night shift.  Getting sleep each night was my saving grace to make it through this experience.  I can't thank Jeff, my brother in law Randy and Ben enough for giving me that little piece of sanity each day.

Our nurses, doctors and therapists at Sinai were fantastic.  Even though Sam's most difficult pain episode was triggered by his first visit with physical therapy and I was frustrated with that experience I soon came to appreciate the therapists getting Sam up and moving because each session got us a little closer to home.  I was thrilled with how they showed me to move and stretch Sam's muscles and each step of his learning to move and transfer himself.  We spent 10 days at Sinai and then were transferred to the rehab facility.  The pediatric unit at Sinai is brand new and the rooms are beautiful so moving into an older facility, in a lower level with poor lighting, sharing a room and not being exactly thrilled with some areas that are huge concerns for Sam such as diet and how his immune system would react to interaction with more children and questionable housekeeping was again going to test my patience and my ability to cope.  Again blessings were to be found in the staff, nurses and therapists located at the rehab facility.  Everyone I came into contact with was helpful, friendly and I actually wanted to take two of the male therapists home with me to Wisconsin to continue working with Sam.  We had the same nurse often and she was always helpful, friendly and attentive to Sam and our needs. As we met the children in the rehab facility I again realized that God was working on my compassion, showing me how different life can be and making me appreciate the blessings I often take for granted.  Security was often in the pediatric ward dealing with some children who had anger management issues along with severe health issues.  My mind reeled wondering what their stories were and how they ended up here.  I felt bad for the children that did not have a parent or family member with them most of the time they were in rehab and some had no one coming to see or check up on them at all.  My heart hurt for the little boy who was born premature, appeared to have some burns on his body and celebrated his first birthday...a major milestone..with not one family member in attendance, no cake, no party, no presents and no one beside the nurses and other children to let him know that his life was valued.  The little girl, maybe 9-10 months old that smiled one of the biggest smiles I have ever seen each and every time you spoke to her but hasn't had a visit from family since they dropped her off months ago.  The older children that were dealing with major health issues that have forever changed their childhoods and their lives.  I prayed for the children, their families, their caretakers and that God would bless each of them with something they wanted or needed in their lives.  Very much like Sam, many of them were content, happy children that knew their lot in life was different than most kids but they made the best of it. They laughed, smiled and wanted to play, interact and have fun in whatever way they could.  Sometimes they got in trouble or pushed the limits...but what child doesn't.

After packing up the van, loading Sam, picking up Ben and heading home we were all giddy to finally be on our way.  We reclined one of the captain chairs, put a cooler in front of the seat and covered it all with a pillow top comforter my mother in law provided.  When Sam was belted in he looked like he was laying on a  soft comfy bed and we hoped he would be comfortable enough to make it on the 12 hour drive home.  Ben took a few pictures of Sam snoozing with his hands folded and looking so peaceful.

I drove through Maryland, Pennsylvania, Ohio and most of Indiana and then had Ben take over to complete the trip through Illinois and Wisconsin.  We arrived home at about 2:30 a.m.well before the snow began to fall.  Jeff and Ben carried Sam into the house with the sling and placed him into his bed.  I can't even describe how good it felt to climb into my bed, it was like a little piece of heaven.  My favorite moment was overhearing Sam let out a big sigh, run his hands over his bed and say "Home", "Good to be home!"  I couldn't agree more.

Although Sam still requires a great deal of care and is still on quite a bit of medication it just feels right to be rehabbing at home.  Each day he gets a little stronger and is able to tolerate moving and transferring himself more and more.  We had a rough night of pin care with 2 pins looking a little more red and goopy than normal so we are starting him on an antibiotic today.  Sam is able to stand and with some slight lifting maneuver his feet to transfer to the wheelchair, commode, bed or recliner. He is still on oxycodone, valium, a stool softner and now an antibiotic.  Add on his vitamins, stretching/PT, extension rod placement and removal, pin care, showering, use of the commode/urinal and our day is quite full but we are happy to be home, happy that he is tolerating things as well as he is, happy that Dr. Standard saw bone growth and good placement on the x-ray and blessed by each and every turn on this journey. It may be a long 4 months but it is so good to see Sam doing so well and back at home.  Here is Sam rehabbing in style.

This kid is a trooper!!!

He has enjoyed opening a present to celebrate each day of rehab.  Thanks Lydia and Anne!!

Of course his favorite part of the package...you can probably guess...

Yep, the bubble wrap!!!

But that smile is what keeps me going each and every day.  If he can get through everything that well...I have nothing to complain about.  I hope to share adventures in aqua therapy sometime next week, but right now I'm tired and need to get some sleep.  Good night everyone, just wanted to let you know that prayers have been heard and answered and we ask you to continue to keep Sam in your prayers. May God bless each of you!!

A Mother's Prayer!

As I try to get ready for Sam's next hip surgery my mind jumps from need to need, organizing, locating, packing, strategizing and then I stop...and I pray for more strength, more brain power, more patience, more comfort and then I stop...and I just give it all to God.

I had everything planned because that's what an A type personality does...and then I got the flu and that put me down for over a week.  I tried Tamiflu and found that I could not tolerate that medication so I used everything in my natural arsenol to fight the flu.  I began to feel better and I got a sinus infection.  I often think this is God's way of letting me know that I'm not in control and as much as I like to think I am...I'm not...and He is.  This week in between trying to get my strength back I am cleaning, packing, and planning...but most of all I am praying and I am taking time to hug, kiss and enjoy Sam.  I think sometimes God just knocks you on your ass to get you to refocus on the important things like less planning and more living, less thinking and becoming more anxious and more sleeping, less doubting and worrying and more believing and hoping.

All the preparation in the world will not get me ready for that moment when they wheel Sam away and I have to put all my faith and trust into God, Dr. Standard and his medical staff.  Surgery is never easy and surgery for Sam is especially difficult due to his pulmonary and immune system issues.  I keep telling myself...he's stronger than he was before, his lungs and breathing are at an all time high right now, he's healthy and God will get us through this...and yet at any moment I feel weak and vulnerable.

Today a friend sent me a passage that I printed and put into my Bible to reassure me on this journey.

Do not look forward in fear to the changes in life;
rather, look to them with full hope that as they arise,
God, whose very own you are,
will lead you safely through all things;
and when you cannot stand it,
God will carry you in His arms.
Do not fear what may happen tomorrow;
the same understanding Father who cares for you today
will take care of you then and every day.
He will either shield you from suffering
or will give you unfailing strength to bear it.
Be at peace, and put aside all anxious thoughts and imaginations


Exactly what I needed!!! Thank you Jamie!!

Sam's surgery is scheduled for Tuesday, January 15th.  Yesterday I met with a medical care company to talk about some additional help with Sam's daily pin care and wound care.  Because of Sam's sensory issues I'm pretty certain that he will not like the idea of pin care and when Sam doesn't like something he can make that process something to dread...sorta like hair cuts or cutting Sam's fingernails and toenails.  I choose to take on haircuts when I feel strong, can tolerate the screaming and swatting and if I'm really feeling empowered I will do the nails right after the shower...and then I feel like I've put in 8 hours of manual labor.  I love that little boy with all my heart but even I realize how difficult he can be when he doesn't like something and this will be a daily something.

Pin care, flossing pins, changing bandages, repacking pins is an area that I know I can get myself through but I'm going to need some help.  As I size up the members of my family...I quickly realize none of their personalities are a really great fit for a daily scream-a-thon session of what will seem like torture to Sam (unless he surprises me and handles it better...of course, keep in mind...I've been waiting 12 years for the haircut and nail care to become easier).  I'm picturing Jeff coming home later and later from work, Ben finding reasons why he has to stay at the shop and Danielle suddenly living at her friends houses. I don't want them to dread or feel obligated to partake in the torture...so I'm hoping the medical assist will keep peace in the family.  There is something about being a Mom that obligates you to just get through it, to somehow make it work, to put aside your feelings and keep focused on the medical necessity of why you are doing it. I know if we had to get it done...we would...somehow, someway but a little help along the way will be a blessing.

Today we had Sam's pediatrician pre-op appointment.  We went over his current health, surgical issues and Sam was given the go-ahead for surgery.  One more pre-op appt. in Baltimore on Monday and we should be good to go.

A common question I have been asked a lot this week...Are you ready????  I don't think as a Mom you are ever ready to see your child go through something like this.  Every surgery, every medical procedure hurts my heart and challenges my mind to figure out the best way to comfort Sam, to let Sam know I am here for him and we will get through this together. If I could step in and take his place I would.  I think the physical pain would be less than the current strain on my heart and mind.  By the time Tuesday gets here...I will be physically, emotionally and mentally drained and maybe that's how it is supposed to be so you can pour yourself into God's hands and he can mold you, strengthen you and lift you back up.  I found this prayer to comfort me as Sam heads into surgery.  It seems to cover everyone involved and I ask that you pray it with me on Tuesday morning:

God of health and healing,
I surrender my son to the physician’s hand,
The surgeon’s knife,
The nurse’s care,
Placing his body in the cradle of others,
Just as I pray for you to hold his soul with Your loving hands.

Bless his surgeon with a steady hand,
Keen vision and a passion for healing.
Bless his caregivers with wisdom and skill,
With compassion, focus and dedication.
Bless our family with ease and comfort,
Energy and endurance, tranquility and peace.

Source of life,
Bring Your healing power to our son
Samuel Henry Mayer.
Remove his pain,
Relieve his distress,
And cure his body, mind and spirit.
Bless him with strength, courage and hope
So that he may know life and health,
Joy and love.
And grant him a full and speedy recovery.

Blessed are You, God of mystery,
Source of health and healing.

Amen

I ask all of my family, friends, blog friends, listserve families to take a moment...stop what you are doing right now...fold your hands and send a prayer up for Sam.  We love and appreciate each and every prayer and thought.  I will be unable to keep up with my email but will update the blog and Facebook as much as I can. To get updates you can enter your email on the right side of the blog and you will be sent updates as I make them or friend me on Facebook, Susan L. Mayer. God bless you all!!!