Friday, July 24, 2009

Giving thanks for year one and looking towards year two...

Alyssa then 1 day old. and Alyssa now at 12 months old.

I don't want to seem insincere or cliche when I say that I'd always had a feeling I would have a special needs child. It being a year into this special world, I pause at announcing this as clarity because such a thought may seem strange. But it's true, just as it is true that throughout my pregnancy with Alyssa, I had an overwhelming connection to the Psalm 139:14 and a repetitive thought in my is by God's grace. I was ignornant to how this would all play out but in hind sight the puzzle pieces are coming together. I do know that I may not get all the pieces to make a whole picture but I'm getting enough to know that it is by divine intervention that my life (and inturn the life of our family) is on this path. All I know is that as I look back I see one piece connecting to another and another ever slowly creating a life puzzle.

The biggest annoyance of this last year is with a *medical community that does not VALUE the lives of the "imperfect" child. It does make me sad that I will have to fight a little harder to get Alyssa's needs met because some else has predetermined that she is not worthy. There's other sadnesses too but they are in the shadows, overcasted by the joys and challenges of being a mom ( a dad) to our shining "star". In our eyes perfect in everyway; yes we know not typical but then again who is? God is so Good. He has prepared me. I didn't know but HE knew and He worked events/moments/people into my life to ready me for this trial.God answers prayers.

I am thankful that once Alyssa entered our lives God saw fit to sustain her life. For how long, we do not know but it doesn't take away from the fact that HE heard and answered our hearts desire and the petetions many of you ferevently made for her wellbeing. God has provided me with a local bibically sound church, gifted preachers and loving breathern to nuture and encourage my caring for HIM and for those that know and love HIM. I praise HIS name in this platform because HE gave us Alyssa. I am learning more and more each day of what HE expects of me and how I can please HIM, praise HIM. Never before would I have exposed myself in such a vulnerable way but here I am and glad to do it if it willhelp bring others to glory.

When I say that I had an inkling that we'd have a child with special needs I don't profess that I had any true level of understanding of how it would unfold. Rather throughout life expereinces I ocassionally felt I was being prepared. This prepartion continues...this last year with Alyssa has been beautiful and frightening. Grief laddened and joy filled. God used instruments ( you all) to help bring us peace and love. He has put me on a path and He will teach me how to follow it. What will this next year bring...more growth? Learning to trust and move beyond the aniexty of what was forecasted by man and into what is pre-determined by God. Yeah I think that it is inpart, the rest are the puzzle pieces yet to be laid out.

Alyssa has overcome a huge hurdle, but is the race won? No, not yet. A long race is ahead of us with many more hurdles. The question on the mind of many is: Now that Alyssa is 1 does this indicate that you don't have to worry about her passing away? Every time I'm asked this question, I hesitate I want to say yes but that wouldn’t be accurate. We celebrated months ago when she was discharged from hospice that she was no longer considered "terminally ill" (A medical term popularized in the 20th century to describe an active and malignant disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient. This term is more commonly used for progressive diseases…not for trauma. In popular use, it indicates a disease which will end the life of the sufferer..a patient is considered to be terminally ill when the life expectancy is estimated to be six months or less, under the assumption that the disease will run its normal course. The six-month standard is arbitrary…)

Now she is in the land of medically fragile (A serious, ongoing illness or a chronic condition that has lasted or is anticipated to last at least 12 or more months or has required at least one month of hospitalization, and that requires daily, ongoing medical treatments and monitoring by appropriately trained personnel which may include parents or other family members, and requires the routine use of medical device or of assistive technology to compensate for the loss of usefulness of a body function needed to participate in activities of daily living, and lives with ongoing threat to her continued well-being). The glass ceiling for Trisomy 18 also remains as most babies born with the condition have a shortened lifespan. Trisomy 18 is a condition of wait-n-see. Each child with this syndrome is affected differently so it's difficult to get a good frame of reference for the path that lies ahead.

Weighing in the aforementioned factors with melancholy assurance we know we are not out of the woods. The SOFT (Support Organization for Trisomy 18 & 13) newsletter comes honoring a child that has passed or we come across a website...some are babies (55 days, 99 days, 138 days) and others are older (18 months, 4 years, 15 years). Living with T18 by definition means that new things develop quickly, routine things rapidly turn into dangerous things and simple procedures are just not that simple for these kids. When I was thinking about writing this, I got a dramatic prompt to how much of a roller coaster T18 can be. Brianna a star member of our T18 brat pack; who's been making strides and celebrated her 2nd birthday around Easter; had an startling health scare ( or CB Briana Botts) involving her lungs/aspiration. This concern had never been an issue for Brianna before and her mom indicated it was a close call..too close. Another T18 brat pack star is Annabel. She's 4 and has had significant bowel/bladder issues and revolving door trips to the hospital for several months now. Just as they get settled at home, another issue arises. There have been other concerns too each faced with unbelievable spirit, courage and love... ( in this journey you will be weary but also ultimately blessed.

God has a plan for Alyssa's life and in this plan I trust. God is sovereign and the plan for her life is already written so I should not concern myself with her longevity. Yet I do (we do). Sadness comes from the knowledge that we will miss her when she leaves this earthly place. If I should outlive her I would miss her every day. This is a mother's selfishness, the desire not to let go of a special gift. Yet eternal life is a greater gift and a gift I want her to receive. In various conversations over the last year the perception of…really with any of our kids/loved ones we never know...There isn’t an expiration date on anyone of us... has been discussed and the idea is spot on.

However for my older children while I shouldn’t have an expectation I do…and I do have a level of certainty that a cold or a rattle sound in a chest will pass and not result in death. I think of Jessica Lindsay celebrating her 6th birthday last summer and a swimming accident led this cute little girl to pass some days later. In reading her blog she is loved and missed greatly. The difference I find between Alyssa and my older children is the expectation. Before I had a chance to dream of a future for Alyssa, the expectation of a future had been thwarted by her diagnosis and harsh prognosis. As Alyssa grows and remains well the thoughts of her passing don’t loom as heavily. They are there, but in the back of my mind. The desire of our hearts speak louder, my (your) prayers speak volumes too. I share this with a level of jubilance...God is being glorified in every breath Alyssa takes. This thought too plays in the back of my mind. It is by God’s grace…

I am thankful for a phone conversation I had with another T18 mom many months ago Alyssa was about 3 months old. She gave it to me straight…you never really relax…There are good days and bad…you wonder, you hope, you pray...then you do. At the time I was hoping for some re assurance that Alyssa turning 1 would be the magic age and all my fears would disappear. What I got was good dose of reality. This legitimate truth helped me to shape my emotional/mental outlook and has served me well these last 9 months.

There is a level of mental preparation required when living with a medically fragile child knowing that your child is “destined” to pass but there is no joy in thinking about, or planning for it. I am glad that the level of urgency is much less now than months ago and the thoughts of her passing are intermittent. The day to day responsibilities of her care, enjoying her, and her being a part of our family minimize what has been projected and magnifies God’s blessing. With faith filled assurance that what was, what is and what will be is orchestrated and so year two has begun.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4-7

*Please know that when I use a label like the" medical community" it is not an all or none distinction. There are very many wonderful medical professionals that we have had contact with, know of or heard about that do value kids like Alyssa. Just as there are some who do not. For you super professionals I thank you and please continue to genuinely, caringly treat your patients meeting their needs as best you can..for the others you can learn a thing or two and I hope that you sincerely do.

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