The best of times, the worst of times

Today Gabe had a doctor's appointment down at Children's. It was an early one, and since we live an hour and a half from DC, it meant getting up before everyone else and packing up Gabe and the car. Lots of time to think as I'm trying to wake up in the shower :)

It's ironic that Gabe was headed down to Children's today because today is the day, two years ago, that he was discharged from the hospital after an 8-month stay. (Good guess, Alicia!)

There is always the fear, as I prepare to drive Gabe down to the hospital, that he might, for some reason, be kept there and admitted. It's never happened before, except for 2 1/2 years ago when I unknowingly took him into the Shady Grove pediatric ER for a minor cold and reflux. But what if today, in some cruel twist of fate, Gabe would be admitted on the anniversary of him being discharged?

Well, it didn't happen, thankfully. The car ride was as bad as I anticipated it being, knowing he's sick and not feeling 100%. Lots of stopping, bagging, and suctioning. But at least we got there, and Gabe even got a new type of trach, a Flex trach that is extended so it's easier on his neck and chin and that his skin isn't getting pinched with the ambu-bag.

As I reflect on the past 2 years, I can say (as I titled this post) there has been lots of good and lots of bad. I say this through teary eyes. If you've read this blog for any length of time, you've been on the roller coaster ride with us and know the struggles we have gone through.

We came home Aug. 14, 2007 with all sorts of experiences under our belt, having seen Gabe go through more than any child should ever have to go through. But we had the training to medically care for Gabe, and we had high hopes. At that point, all I could think about for 2-3 months prior was "GET ME HOME" (and Gabe of course). I don't care if he comes home with a freakin' hospital bed chained to his leg, I just wanted him home, and I wanted to be home with my family.

Nothing could have prepared us for what we were going to have to deal with for the next two years:

::the disappointment of the home health care industry (Instead of making life easier on the person needing home health care, nursing agencies and durable medical equipment companies can in many ways be more of a headache than a help)

::the advocacy we would have to make for Gabe on a daily basis (sometimes referred to as sheer "fighting" for Gabe)

::the amount of work it would be to care for Gabe, and take him out

::the strain it would put on a family

::the number of phone calls and contacts I'd have to make at different doctor's offices, insurance companies, agencies, and companies

::the fact that our house would unfortunately become a revolving door and my calendar a schedule of doctor's appointments, therapies, meetings, etc.

::the loss of privacy in our own home

::the number of nurses that would sit in my favorite glider that I've rocked all 3 of my babies in (probably 100+ and counting at this point)

::the middle-of-the-night ER trips

::the incredible heartache of betrayals, disappointments, uncertainties

::the ability for life to change so drastically from one minute to the next

::the inability to do so much as a family

::the loss of "normalcy" or the need to create a "new normal"

::the slow progression of improvements in Gabe

::the amount of help needed from family and friends

Sounds pretty depressing, huh? I guess it's only fair that I share the good aspects of these past 2 years, because even as I was typing above some blessings were popping into my head.

::the amazing people we have had the opportunity to meet, when, under any other circumstance, we probably would have never met them. A few I can think of: Lisa M. and her family, Michele A., Anna, Sophy, Mary M., Tina W., Cathy F., Vicki (Physical Therapist), Amy (Coordinator), Michelle (Coordinator), my blog friends and their kids, more I can't think of right now

::having family so close (both mine and Shaun's) to offer love, help and support

::seeing our church family sacrifice their time and energy to help us by spending time with Gabe, loving on him, pouring into our girls, bringing meals, etc.

::learning to lean on God for everything; I can assure you that if Gabe was healthy and everything was "normal" I probably wouldn't have the need for and dependency on God that I do right now; truly we rely on Him for strength, faith, and grace daily

::the ability to build up my faith (because I can be so doubtful sometimes! That's the truth!)

::learning to keep things in perspective

::the fact that Gabe survived so much and is still alive and fighting. He has a will to live, and I pray he has many more years with us

::Gabe's laughter, his smile, his sense of humor, his stubborness, his personality, his adorable features, his heart, his innocence, his ability to bring so much joy

::the encouragment we've received over the years from countless people, not to give up, to keep persevering, not to lose heart or faith

::the happy memories we have been able to make as a family (vacations, outings, simple family time)

::The growth we have seen in Brooke, as a mature, wise, thoughtful older sibling... in Faith, as a sensitive, sweet, loving big sister to Gabe... in Gabe, who has surely made strides and continues to improve

::Gabe coming off so many medications

::Looking ahead to Gabe starting Preschool in September at a local special education school

As Gabe prepares to enter his third year of life, I pray for more strength, more love, more improvements.

Lamentations 3:22-24

Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness. I will say to myself, The Lord is my portion, therefore I will wait for Him.

Galatians 6:9

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.